Doktorarbeit / Dissertation, 2015, 471 Seiten
Doktorarbeit / Dissertation
CHAPTER 5 - Phase III: The randomised controlled trial of the study developed pelvic radiation therapy psychosexual rehabilitation information booklet for women with gynaecological and anorectal cancer
I certify that the work in this thesis has not been submitted for a degree nor has it been submitted as part of requirements for a degree except as fully acknowledged within the text.
I also certify that the thesis has been written by me. Any help that I have received in my research work and the preparation of the thesis itself has been acknowledged.
Franchelle Pauline Lubotzky
For Gideon, Claire and Ash. You are the loves of my life and inspire me to be the best person I can.
I am deeply grateful, indebted and thankful to all my family, friends, and colleagues. Specifically, I would like to thank the following people:
To my primary supervisor, Dr Ilona Juraskova, thank you for your ongoing belief, encouragement, understanding, support and invaluable supervision of my work. Thank you for introducing me to this area of endeavour which lead me to where I would like to work and my development academically and as a clinician. I have gained so much from your experience and expertise. In equal measure I have learned from the way that you admirably conduct yourself. It has been a pleasure and privilege working with you throughout my candidature.
To my associate supervisor, Professor Phyllis Butow, I am truly indebted to you and grateful for your support. Thank you for your belief and help completing my PhD at critical junctures and for stepping in and providing me with invaluable advice and supervision. You were always available when I really needed you. I am so privileged and honoured to have worked with you and have learned so much in an area which I value and feel proud to be part of. I have benefited greatly from your experience, expertise and professional and caring manner in which you conduct yourself.
To my associate supervisor, Associate Professor Caroline Hunt, thank you for being available and supportive on often such short notice. You experience and expertise was invaluable to me in writing my thesis and kept me in touch with my clinical psychology roots. I thank you for this. I feel privileged to have worked with you and have learned so much from the professional and supportive manner with which you have treated me.
To my friend/research assistant/practice manager, Sue Thorpe, I cannot put in to words how invaluable your support, dedication, passion, belief, commitment, enthusiasm and care of me and this study have been. I could not have done this without you. You listened to me ad infinitum and always gave encouraging, level-headed, positive and helpful advice when I often could not see the wood from the trees. I will always appreciate how you have been and I am so grateful and indebted to you. You have gone above and beyond in your commitment to this research.
To my statistician, Anubhav Tewari, thank you for all the statistical assistance that you have given me. Thank you for your support, patience and encouraging input. Your professionalism and dependability made all the difference at very stressful and difficult times. I am so grateful and indebted to you for all the help you have given me.
To the women on the pilot and the trial, I am so grateful and thankful for your generous participation during what might have been exceedingly difficult times. Where you might not have directly have benefited by your participation. I have so much respect for you all and for everything that you go through and thank you for sharing your experiences with me.
To all the clinicians I met on the pilot and trial that so generously supported the study, thanks you. I learned so much from you and have enormous respect for you and the work that you do.
To my dear friends, Laura and Jeff, your ever present interest, support, belief in me and fun-filled times, where I could have a break from it all, sustained me through this process and through the hardest times. I am truly grateful to you both for your incredible friendship, for patching me up (in Jeff’s case) and feeding me literally and metaphorically (in Laura’s).
To Paula, Tina and David, Heather and Martin, Glenn and Michelle, Tamar and Tammy thank you for your invaluable support and encouragement and for being there through it all, both the good and the bad times.
Mom and George, you are always supportive and caring no matter what. You are so generous of yourselves and so caring and positive, thank you.
To my late father-in-law Benny, thank you for your kindness, generosity and support of me and of my booklet study. You went through so much with your health and were always stoic and dignified in the way you dealt with it. You inspired me to do this work. You were there for me helping me in ways that allowed me to care for my family and undertake my career. I will always be thankful to you for this. I’d also like to thank my mother-in-law Ella for her, generosity and care throughout this process. You have made me understand the meaning of endurance.
To Gav, thank you always listening and supporting me. I am so appreciative of how you are there for me and grateful for our relationship. It is so special to have you in my life. I am so proud of you.
To my darling sister Joyce, thank you for your belief and encouragement through the good and the hardest of times. Your support and care has been invaluable for me. Thank you for giving me the most precious gift, your time. Thanks Marc, Jas and Noa for your encouragement and support.
My darling daughter Claire, I have always known what the others say about you; you truly are an angel. Your amazing support, lack of judgment and selflessness shines through every day. I am so privileged to have you in my life. No words can describe how I feel about you and how grateful I am for our relationship.
My darling daughter Ash, (my Ror), thank you for your unwavering, positive uplifting support and care. Thanks for your understanding, for listening, and for always being there for me through thick and thin. I could not have done this without your backing and belief in me. No words can convey how truly thankful and grateful I am for our relationship. You are so special, kind and loyal.
To my extraordinary partner Gideon, there are no words to describe or convey how thankful I am for your love, care, patience, help, understanding and encouragement. You always believed in me. I am eternally grateful and indebted to you. I am so lucky and blessed to have you as my partner and best friend. You truly are a very special person.
The present study entailed the development (Phase I), pilot (Phase II) and randomised controlled trial (RCT) (Phase III) of a psychosexual information booklet for women undergoing pelvic radiation therapy (PRT) for gynaecological or anorectal cancer. This was undertaken due to the high prevalence of psychosexual morbidity following PRT, and the lack of existing resources to facilitate recovery and reduce distress.
The psychosexual information booklet was developed based on the literature, input from an expert multi-disciplinary advisory group, and published standards in developing information materials for cancer consumers.
After the booklet development, a mainly qualitative retrospective pilot study was conducted which explored: a) women’s experiences and rehabilitation informational needs following PRT; b) the feasibility and acceptability of providing women with an information booklet about radiation-induced side effects potentially affecting recovery, and especially sexual functioning/vaginal changes; and c) assessed the acceptability of a measurement protocol that would be used in a later RCT. The pilot highlighted many challenges to quality of life faced by women after PRT, and revealed diverse informational needs, particularly regarding sexual rehabilitation. Overall, the pilot findings provided support for the provision of a psycho-educational resource to better support women in physical and psychosexual rehabilitation following PRT, as well as some guidance regarding improving the format of the booklet. The pilot booklet was revised based on participant feedback, as well as the recent Cochrane Review (Johnson & Miles, 2010) findings regarding vaginal dilator use. Given the high levels of acceptability of the pilot psychosexual booklet, its effectiveness was then prospectively evaluated in a multicentre randomised controlled trial (RCT).
The longitudinal quantitative RCT assessed whether the psychosexual booklet improved adherence to recommended rehabilitation strategies (dilator use, vaginal lubrication and pelvic floor muscle exercises), improved knowledge, lowered levels of anxiety, depression and PRT-related psychological distress and improved sexual activity, function and satisfaction post PRT. The RCT demonstrated that the psychosexual booklet improved knowledge and vaginal dilator use. Given that women in the pilot recognised dilator use as a difficult area for them, with many patient-clinician and patient-related barriers inhibiting use, this represents an important outcome.
The clinical and psychosexual significance for women in implementing rehabilitation strategies is potentially far-reaching with regards to facilitating the detection of new and/or recurrent cancer (with dilator use), and to improving sexual and broader relationship outcomes for women, which in turn, could affect their physical and emotional wellbeing. However, the recent Cochrane Review (Miles et al., 2010) highlighted that there is a lack of evidence regarding the efficacy of dilator use which may alter dilator provision practices in the future. Further research is needed and is being undertaken in this area, which remains controversial.
Furthermore, though levels of psychological distress and sexual dysfunction were low in the present study, the booklet failed to further lower levels of PRT-related psychological distress or anxiety and depression, or to improve sexual activity/function/satisfaction. Thus other strategies may be required to improve quality of life, and reduce psychological and sexual/psychosexual morbidity post PRT/treatment for gynaecological and anorectal cancer, particularly in the subset of women who suffer more morbidity in these areas.
In summary, women experience a range of psychosexual challenges after PRT for gynaecological or anal/rectal cancer. The study psychosexual booklet appears to be useful for women in the gynaecological and anorectal post PRT setting. Women in the pilot found it to be helpful and useful and reported that it reduced distress. In the RCT it was shown to improve knowledge and vaginal dilator use. Future work is required to investigate ways in which the impact of the booklet could be enhanced to further improve women’s psychosexual outcomes.
The development, pilot and randomised controlled trial of a psychosexual rehabilitation information booklet for women undergoing pelvic radiation therapy for gynaecological or anorectal cancer
In this chapter international and Australian statistics regarding aetiology, incidence and prevalence of female pelvic cancers (cervical, endometrial, vaginal, vulvar, rectal and anal) relevant to the current study will be presented. Following this section, the treatment of these cancers will be discussed, with presentation of major treatment side effects.
An Australian Institute of Health and Welfare (AIHW, 2012) report identifies cancer as the most important cause of disease in Australia. In 2012, more than 120,700 Australians were diagnosed with cancer, of which 40% were female. This excludes basal carcinoma and carcinomas of squamous cells of the skin. In females, the most frequent cancers reported were: 14560 cases of breast cancer, 7080 cases of bowel cancer, 5070 cases of melanoma of the skin, 4650 cases of lung cancer and 2270 cases of uterine cancer (AIHW, 2012). Bowel and uterine cancers are of relevance to the current study.
The number of Australians who died due to cancer was more than 42800 in 2010. Thus 3 out of every 10 deaths were due to cancer, making cancer the second-most common cause of death after cardiovascular diseases in Australia (AIHW, 2012).
Cancer survival rates in Australia have improved over time. The 5-year survival rate for all cancers combined improved from 47% in 1982–1987 to 66% in 2006–2010. The survival outcome of Australians from cancer is generally better than people living in other countries and regions (AIHW, 2012).
The current study will focus on endometrial cancer (EC), cervical cancer (CC), vaginal cancer (VC) and vulvar cancer (VUC), which are forms of gynaecological cancer (GC). Additionally the study will focus on rectal cancer (RC) - a type of colorectal/bowel cancer (CRC) - and anal cancer (AC). Both RC and AC are cancers affecting the anorectal region and as such are termed anorectal cancers (ARC). These cancers can all be treated with pelvic radiation therapy (PRT). The above terminology will be used throughout the thesis.
Detailed worldwide and Australian incidence, prevalence and aetiology data are presented in the next section for women with gynaecological and anorectal cancer. Data on age-standardised mortality and survival rates, 5-year survival rates, diagnosis by years and burden of disease are also presented.
The term “Gynaecological Cancer“ (GCs) is a common term referring to all cancers of the female reproductive system. Specific names are given according to the organ or part of the body where they first develop. These may be ovary, uterus, cervix, vagina or vulvar. The causes of many GCs are not fully understood. However, there are a number of recognised risk factors linked with the development of one or more types of GC (Cancer Australia, 2014). These are discussed below in the sections on specific cancers.
Comprehensive global cancer estimates are given in the International Agency for Research on Cancer reports. According to its latest report, in 2002, about 19% of the estimated 5.1 million new cancer cases were GCs, and about 13 million women were living with GC up to 5-years since diagnosis across the world (Sankaranarayanan & Ferlay, 2006). GC accounts for 9.4% (4,534) of all new cancers in Australian women (AIHW, 2012). Between 1982 and 2008, there was a 54% increase in new cases of gynaecological cancer in Australia (Cancer Australia, 2012). On average, twelve women were diagnosed per day in 2008. 15,851 women were living following diagnosis in the last 5 years before 2008 (AIHW, 2012).
GC accounts for 8.7% of all cancer deaths in Australian women. Between 1982 and 2007 the mortality rate reduced by 34%; in 2007 risk of dying from GC before 85 years was 1 in 63 which lowered from 1 in 43 in 1982 (Cancer Australia, 2012).
Five-year relative survival from GC has also improved in Australia, from 59.6% in the period 1982 -1987 to 67.3% in the period 2006-2010, for pooled GCs.
Cervical Cancer (CC)
The lower, narrow part of the uterus connected with the top end of the vagina is called the cervix (American Society of Clinical Oncology, 2014).
Human Papilloma viruses (HPVs) have been found to be a causal factor in developing anogenital carcinomas (cervical and anal cancers) (National Cancer Institute, 2013; Moore-Higgs, 2007). The main risk factors for CC include smoking, high parity representing 7 or more full-term pregnancies and long-standing use of oral contraceptives (National Cancer Institute, 2013).
Globally, CC is the third most commonly identified GC and the fourth most common cause of female cancer deaths. About 9% (529, 800) of total new cancer cases and 8% (275, 100) of overall cancer deaths of women in 2008 were CC cases according to GLOBALSCAN (GLOBOCAN 2008, cited in Jemal et al., 2008). In Australia, 778 cases of CC were diagnosed in 2008. CC accounted for 17.2% of all GCs and 1.6% of all cancers and was ranked as the 13th most commonly diagnosed cancer in women.
The estimated figures for mortality from CC in developing countries were 242,000 deaths in 2008. This is more than 85% of all CC cases in the world. This high figure is ascribed to lack of early detection and screening for pre-cancerous and early stage CC, lack of HPV testing and poor access to CC vaccine which can prevent 70% of CCs (Jemal et al., 2011).
With 208 deaths in 2007, CC was the 3rd most common reason for all Australian GC deaths. CC is also ranked 18th in terms of frequency across all cancer deaths among Australian women (Cancer Australia, 2012).
In Australia, between 2006-2010, relative 5-year survival rates for CC were 72% (Cancer Australia, 2012). At the end of 2008, 2286 women suffered from CC over a five-year period (AIHW, 2012).
Uterine / Endometrial Cancer (EC)
Uterine cancer includes all cancers formed in the tissues of the uterus. Two types of uterine cancers occur. Endometrial cancer starts in the uterus linings and is the most common uterine cancer. Uterine sarcoma develops in the muscles or other tissues of the uterus and is a rare cancer. (National Cancer Institute, 2013).
EC mostly affects postmenopausal women. The risk factors of EC are: postmenopausal oestrogen treatment, a high-fat diet, obesity, reproductive factors like nulliparity (never carried a pregnancy to term), polycystic ovarian syndrome, early menarche and late menopause and use of Tamoxifen. In contrast with the general population, markedly higher risk of EC is observed among women with hereditary nonpolyposis colorectal cancer syndrome (National Cancer Institute, 2013).
Estimated new cases worldwide in 2008 were 287,100 (American Cancer Society, 2011). EC is the most common invasive GC in Australia, with the incidence rising with an aging population and growing rates of obesity (Cancer Australia, 2009). In 2010, EC became the most frequently identified cancer in women with a mean of 6 females diagnosed per day (Cancer Australia, 2012). In 2008, EC accounted for 44.5% of all GCs and 4.2% of all cancers in women. (AIHW, 2012). Between 1982-2008 new cases of EC more than doubled and the incidence grew by 22%, with the greatest rise in incidence being in women 50 years and older (ranging from 19-26%)(Cancer Australia, 2012).
With 338 deaths in 2007, EC was ranked the 2nd most common cause of GC death in Australia. Out of all GC deaths, 22.5% was due to EC. Causing 2% of all cancer deaths, EC occupied the 14th rank in all cancer deaths among Australian women.
Between 2006 -2010, relative 5-year survival rate for EC in Australia was 82%, which is the highest of all individual GC types (AIHW, 2012). Overall, improvement in 5-year survival rate was 75% during 1982-1987 to 82% during 2006-2010 (AIHW, 2012). An AIHW report (AIHW, 2012) reported that 7944 of all females living at the end of 2008 were diagnosed with EC in the preceding five years (AIHW, 2012).
Vaginal Cancer (VC)
Any kind of cancer that forms in the tissues of the vagina is considered vaginal cancer (National Cancer Institute, 2014). They are rare tumours as only about 1% of all GC cancers are vaginal cancer. (National Cancer Institute, 2014). There are two primary types of VC. They are squamous-cell carcinoma (85%) and adenocarcinoma (in women 30 years and younger) (5-10%) (National Cancer Institute, 2014). There is an uncommon form of adenocarcinoma, which is related to in utero exposure to Di-Ethyl-Stilbestrol (DES).
Given the rarity of vaginal cancer statistical information is limited. The current available worldwide and Australian data are presented below.
In Australia, there were 70 cases of VC identified in 2008. VC ranked as the 38th most frequently diagnosed cancer in women, accounting for 1.5% of all GCs and .01% of all cancers in females (AIHW, 2012).
VC was the 5th most common cause of Australian GC deaths, with 26 deaths in 2007 (AIHW, 2012). VC is ranked 25th in frequency across all cancer deaths in Australian women (AIHW, 2012).
In Australia, between 2006-2010, relative 5-year survival rates for VC were 45% (AIHW, 2012). At the end of 2008, the 5-year prevalence rate of VC in women was 202 in Australia (AIHW, 2012).
Vulvar Cancer (VUC)
The immediately exterior area of vagina is the vulva. The vulva includes the tissues of the mons pubis, labia, clitoris, Bartholin glands, and perineum (“Vulva”, 2014). The most common vulvar carcinoma is observed in the labia majora, accounting for about 50% of cases. The less frequent occurrence in the labia minora accounts for about 15-20% of vulvar carcinoma cases. The least frequent sites are the clitoris and the Bartholin glands areas (Macnab et al., 1986). Squamous cell cancers are observed in about 90% of vulvar carcinomas (Eifel et al., 1997). The precursors of invasive squamous cell cancers could be some Vulvar Intra-epithelial Neoplasias (VIN) as reported by the National Cancer Institute (2014).
Risk factors for VUC include the following. In many cases VUC is preceded by condyloma (genital warts) or squamous dysplasia (abnormality of development). According to the current evidence, Human Papilloma Virus (HPV) could be strongly associated as a factor for causing many genital tract carcinomas (Hampl et al., 2006). Many common risk factors of cervical cancers are shared by these HPV-linked cancers also. These include: early age sexual intercourse, multiple sex partners, and history of abnormal Pap smears (Schiffman & Kjaer, 2003).
As globally VUC is rare among women (Grulich et al., 2010), there is not much statistical data available. Below the current available worldwide and Australian data are presented.
Developing countries report a higher percentage (approximately 60%) of VUC cases. About 66% of VUCs are reported among women of 70 years or more (Grulich et al., 2010).
In Australia, there were 282 cases of VUC identified in 2008 with VUC placed as the 20th most commonly diagnosed cancer in women, accounting for 6.2% of all GCs and 0.6 % of all cancers (AIHW, 2012).
VUC was the 4th most common cause of Australian GC deaths, with 65 deaths in 2007. VUC in Australia is placed 36th in frequency across all cancer deaths in women (AIHW, 2012).
In Australia, between 2006-2010 relative 5-year survival rates for VUC were 71% (AIHW, 2012). The 5-year prevalence rate at the end of 2008 for women with VUC was 1,034 in Australia (AIHW, 2012).
Colorectal Cancer (CRC)
CRC (which is also known as colon cancer, rectal cancer or bowel cancer) develops in the colon or rectum (parts of the large intestine). Risk of CRC is doubled in cases where CRC was diagnosed in a first-degree relative, especially before 55 years of age. Another significant but weaker risk factor is inflammatory bowel disease. CRC can also occur in persons with genetic pre-disposition like familial adenomatous polyposis and hereditary nonpolyposis coli. However, this accounts for less than 5% of cases (National Cancer Institute, 2014). Other risk factors include: lack of physical activity, overweight, obesity, smoking, consumption of red and processed meat and excessive consumption of alcohol (Ferrari et al., 2007; Giovannucci, 2006 cited in Jemal et al., 2011).
Globally, CRC is second among the most diagnosed cancers in females. The estimated female incidence of CRC is 570,100 or 9.4% of the total global new cancer cases as reported in 2008 (GLOBOCAN, 2008 cited in Jemal et al., 2011). In NSW alone, 3,000 new colon cancer cases and 1,670 rectal cancer cases are identified annually (Cancer Institute NSW, 2013).
Worldwide, there were 288,100 estimated deaths in females from CRC in 2008. CRC death rates have declined in Western countries as a result of improved treatment, increased awareness and early detection/screening (Edwards et al., 2010; Mitry et al., 2002; Sant et al., 2001 cited in Jemal et al., 2011).
In Australia, the one year survival rate for RC is 84% (Coleman, et al., 2011). The 5-year prevalence of CRC in 2004 for females was 18,940 cases, which accounted for 13.4% of all prevalent cases (AIHW and AACR, 2010).
Rectal Cancer (RC)
The rectum is the last section of the large intestine which is nearest to the anus (National Cancer Institute, 2013). RC is a type of colorectal cancer (CRC) that forms in these tissues of rectum.
There are many risk factors for RC. Patients with personal history of CRC, first degree family history and a personal history of ovarian/endometrial/breast cancer constitute the high risk groups accounting for 23% of all CRCs (Oncolink, 2006). Other risk factors for RC are the same as those for CRC described above (National Cancer Institute, 2014).
In terms of international data, cancer of the rectum accounts for approximately 38% of CRCs diagnosed annually in the UK (O’Connor et al., 2010). Among women, CRC is the second most common cancer, of which about one-third occurs in the rectum. In 2006, there were 1,824 cases of RC in Australia, accounting for 4% of all female cancers (ACIM, 2012).
In 2006, there were 541 RC deaths in Australia (ACIM, 2012).
The 5-year survival rate estimated for women with RC for the period 2002-2008 was 66.7% in the USA (Panjari et al., 2012). With improvements in treatment, the number of RC survivors is projected to increase (Roh et al., 2009). There are no Australian data on survival rates from RC, as distinct from CRC.
Anal Cancer (AC)
The anus is the opening of the rectum (i.e. last part of the large intestine) to the outside of the body. AC is formed in tissues of the anus. (National Cancer Institute, 2014).
Human papilloma viruses (HPVs) have been found to be an important factor in developing anal cancers (National Cancer Institute, 2013; Moore-Higgs, 2007). A history of cervical cancer, vulvar or vaginal cancer and immunosuppression after organ transplant or immunosuppression related to human immunodeficiency virus (HIV) have also been linked to the development of AC (Holland, 2007)
AC is a rare cancer in the general population, with annual age-adjusted incidence rates of all types combined of less than 2 per 100,000 worldwide. For reasons only partly understood, AC incidence has been increasing over the past three decades in a number of countries (Aggarwal et al., 2013).
In 2009/2010, 194 females were diagnosed with AC in Australia, accounting for 0.4% of all cancers in females. The Australian incidence of AC has increased significantly, from less than 1 in 100,000 in 1982 to 1.5 in 100,000 in 2005 (Simpson et al., 2012).
There were 37 female deaths from AC in Australia in 2009/2010 (AIHW & AACR, 2012).
Australian 5-year survival rates range from 20% in the case of metastatic disease to 80% in the case of localised anal cancer (Grulich et al., 2010).The five-year relative survival rate increased by nearly 10% from 58.9% to 63.3% over the last 20 years (Jin et al., 2011).
This section describes common treatments administered for endometrial (EC), cervical (CC), vaginal (VC), and vulvar cancer (VC) and female anal (AC) and rectal cancer (RC) patients, with a focus on pelvic radiation therapy (PRT) which is the target treatment in the current study. Side effects of the treatments will be discussed in conjunction with the descriptions of the treatments below. Physical vaginal changes/sexual/psychosexual effects and adjustment/recovery post PRT, which are related to the target treatment for this study, will be the major focus in this section.
Gynaecological (GC) and anorectal cancers (ARC) are primarily treated with surgery, radiotherapy and chemotherapy and with various combinations thereof, for example, surgery and radiotherapy, radiotherapy and chemotherapy (called chemoradiation), or radiation alone. Neoadjuvant therapy may be given before, and adjuvant treatment may be offered after, the primary treatment (e.g. surgery), to target any microscopic disease that cannot be detected by eyesight or scans (Moore-Higgs 2007), in order to improve the outcome of patients at high risk of relapse.
The image below (Figure 1) illustrates the areas of the female reproductive system which are in the pelvic region and can be affected by PRT treatment. Areas like the bladder and rectum are also affected as they lie within the pelvic radiation field area.
Reproduced with permission by Cancer Council Victoria from the booklet ‘Sexuality and Cancer’, 2007, p. 9, with illustrations by Con Stamatis.
Surgical treatment is often the primary treatment offered to GC patients (Audette & Waterman, 2010). The treatment for CC consists of hysterectomy (removal of the whole uterus including part of the vagina) with removal of the lymph nodes if the tumour is found to be invasive. If pathological investigations reveal high risk characteristics in surgery-treated patients, radiation therapy is also done to reduce the risk of relapse (National Cancer Institute, 2013).
EC is a localized disease that can be cured usually by hysterectomy and bilateral salpingo-oophorectomy. Best results are achieved with either of the two standard treatments: hysterectomy or hysterectomy with adjuvant radiation therapy (National Cancer Institute, 2014).
Surgery alone or surgery combined with pelvic radiation is typically used to treat VC (National Cancer Institute, 2014). Stage of tumour is the determining factor of VC treatment options. In early stages, surgery and radiation therapy are more effective, but in more advanced stages, radiation therapy is the main treatment (National Cancer Institute, 2014).
Although the standard primary treatment for VUC is surgery (National Cancer Institute, 2014), high post-surgery complication rates such as wound healing problems, lymphoedema, and functional deficits have, since the 1980’s, driven the tendency towards more restricted surgery, sometimes combined with radiation therapy (Eifel et al., 1997, cited in National Cancer Institute, 2014). More commonly, radiation is an adjuvant to surgery in patients in stages III or IV of the disease (Hacker et al., 1993 cited in National Cancer Institute, 2014).
Side effects of hysterectomy and radical hysterectomy following GC include adverse vaginal changes (Brotto et al., 2008; Bergmark et al., 1999, Audette & Waterman, 2010, Carter et al., 2013) including: shortening of the upper vagina (Corney et al., 1993, Bodurka & Sun, 2006) and damage to pelvic nerves (Andersen et al., 1994; Carter et al., 2013). Sexual short and long-term effects of hysterectomy have been reported by many women (Cull et al., 1993; Lamb, 1990; Pieterse et al., 2006; Carter et al., 2013) and have been found to include: loss of sensitivity and difficulty achieving orgasm (Andersen et al., 1994), dyspareunia and vaginal bleeding (Corney et al., 1993), diminished sexual desire and interest (Greenwald et al., 2008), difficulty becoming sexually stimulated (Weijmar Schultz et al., 1991), reduced vaginal lubrication (Kylstra et al., 1991), diminished sexual satisfaction (Bukovic et al., 2008), and sudden and early menopause (Carter et al., 2011). Patients and partners undergo psychological and physical distress due to post-radical hysterectomy discomfort, which can negatively impact sexual function even though there may not be any effect on the ability to have an orgasm for women (Audette & Waterman, 2010). Infertility is also a consequence of radical hysterectomy (Stead et al., 2007).
Any cancer treatment that damages ovarian function and/or leads to the removal of the ovaries can have adverse effects on vaginal/sexual health due to hormonal deficiency (Carter et al., 2011; 2013; Schover, 2005; Tierney, 2008). Surgical menopause is distressing to deal with, firstly because it is instantaneous and often difficult to manage hormonally since oestrogen is contraindicated especially for EC patients (with ovarian removal common since it is a hormone dependant cancer) (Quinn, 2007). The sudden onset of treatment-induced menopause (also applicable for radiation and chemotherapy patients who lose ovarian function) induces many side effects. The significant effects are hot flushes, labile mood, tiredness, changes in body image, disappearance of desire for sexual acts and enjoyment, vaginal dryness, infertility and scarring (Audette & Waterman, 2010; Carter et al., 2013; Hughes, 2008).
Apart from hysterectomy, the possible other procedures for GC patients are: vulvectomy, pelvic exenteration alone or in combination with radical hysterectomy (Bodurka & Sun, 2006, Audette & Waterman, 2010). Each has its own sexual dysfunction effects. Sexual function is affected post vulvectomy due to the extraction of skin and subcutaneous fat of the labia majora and minora, clitoris, and perineal body and the regional and femoral lymph nodes (Audette & Waterman, 2010; Carter et al., 2013).
Pelvic exenteration, often used to treat recurrent disease such as cervical and vaginal cancers, includes hysterectomy, removal of the bladder, vagina, urethra and rectum and salpingo-oophorectomy, requiring ostomies for bowel and bladder function (Audette & Waterman, 2010, Carter et al., 2013). The surgery related resultant negative sexual affects include striking changes to a woman’s appearance also affecting, for instance, body-image and psychosocial functioning with a long journey to physical and psychological recovery, although often the vagina is reconstructed and the intactness of clitoris and vulva is maintained (Audette & Waterman, 2010).
GC tumours which are larger early stage or late stage are treated using radiation therapy as a pre-surgical or adjuvant treatment, or cisplatin-based chemotherapy plus hysterectomy (Quinn, 2007). Various types of chemotherapy are used in treating GC patients, both definitively and in combination with radiotherapy and surgery (Quinn, 2007). Although sometimes advocated, chemotherapy is not shown to be an effective curative method for advanced VC and there are currently no routine medication schedules for it (National Cancer Institute, 2014). Newer integrated approaches are used with VUC. These include integration of surgery, radiation therapy, and chemotherapy, suitably combined depending upon clinical and pathologic conditions. However, there are varying patterns of practice in combining these treatments (National Cancer Institute, 2014; Shylasree et al., 2011).
Fatigue is the most frequently reported and debilitating side effect of chemotherapy, as well as changes in skin, epilation (hair loss), dry mouth, taste alterations, nausea and vomiting. All these effects can play a part in later development of sexual dysfunction or sexual activity (Quinn, 2007). Other side effects of chemotherapy are anxiety, depression, awareness of changed body image and marital or partner difficulties (Carmack-Taylor et al., 2004).
As discussed in section 1.4.1, premature menopause can be caused by GC treatments, including chemotherapy (Lo Presti et al., 2004; Jensen et al., 2007). Chemically-induced menopause experienced by women, like with surgery, can be more acute and extreme than naturally occurring menopause (Audette & Waterman, 2010). Arousal and vaginal lubrication disruption (Stead et al., 2007) and both sexual desire and excitement problems (Andersen et al., 1992) are linked with premature menopause. These effects have been found to significantly diminish women’s Quality of Life (QOL) (Carter et al., 2011; 2013). Infertility can also be a consequence of chemotherapy treatment if premature menopause occurs (Molassiotis et al., 2002).
For localized RC (i.e. cancer that has not spread), the preferred treatment is complete surgical removal of the tumour with adequate margins, with the attempt of achieving a cure, although radiation and chemotherapy will often be given before or after surgery (National Cancer Institute, 2014). The surgical approach to treatment varies according to the location, stage and presence of high-risk features (e.g. positive margins). Where possible, attempts are made to preserve nerve and sphincter function; however this is not possible for all patients, leaving them with end-colostomy (permanent stoma/bag).
In abdominoperineal resection (APR), incisions are made in the abdomen and perineum and the rectum and part of the sigmoid colon along with the associated (regional) lymph nodes are removed. The last part of the remaining sigmoid colon is brought permanently to the surface of the abdomen as an opening, called a colostomy. As the quality of life generally worsens after APR, the less invasive lower anterior resection (LAR) (“Abdominoperinial resection”, 2014) is generally preferred for RC depending on its surgically feasibility.
Surgery is no longer the treatment of choice for AC (National Cancer Institute, 2014) unless there is recurrence.
In RC, chemotherapy may be used in addition to surgery in certain cases as neoadjunct (before surgery) or adjuvant (after surgery) therapy (“Colorectal cancer”, 2014; National Cancer Institute, 2014). More recently, oncologists are increasingly using an approach combining chemotherapy and radiation treatments, to reduce the necessity of performing the incapacitating AC surgery. This combined approach has increased the preservation of an intact anal sphincter helping to improve the quality of life after definitive treatment for AC patients (National Cancer Institute, 2014; “Anal cancer”, 2014).
There are many side effects of chemotherapy for rectal and anal cancer, including anaemia, bruising and bleeding, tiredness, lowered resistance to infection (neutropenia), nausea and vomiting, sore mouth, hair loss, sore/numb and/or tingling hands and feet, and diarrhea.
In radiation therapy, ionising radiation is used to damage the DNA of the exposed tissue resulting in the death of the cells (“Radiation therapy”, 2014). The success of radiation therapy depends on administering an adequate dose to the entire tumour without causing serious damage to the surrounding tissues, with the goal of achieving the highest probability of local tumour management with the least chance of side effects/toxicity (Moore-Higgs, 2007). Radiation therapy can be delivered with curative or palliative intent (Moore-Higgs, 2007), the former being the focus of the current study.
With particular relevance for the current study, combined treatment modalities (e.g. radiotherapy and chemotherapy) have been associated with not only improved survival rates, but also increases in toxicities which result in significant morbidity (Vogel, 2007; Creutzberg et al., 2000; Greimel et al., 2009).
Provision of information about PRT-induced vaginal changes, sexual acute and late effects/toxicities and available rehabilitation options represents the focus of the current thesis.
External Beam Radiation Therapy (EBRT)
The most common method of radiation therapy is EBRT. Ionising radiation is delivered either using a radioactive source or using an electromagnetic energy from a machine. This is placed at some distance from the tissue to be treated (see Figure 2). It is differentiated from brachytherapy where radioactive sources are implanted or placed internally (i.e. administered internally) (Moore-Higgs, 2007). EBRT equipment is classified according to energy produced and depth of penetration within the intended area (Moore-Higgs, 2007).
In EBRT, the first step is the planning or simulation session. In this session, marks are placed on the body and measurements are taken to direct the radiation beam in the correct position for each treatment. This is followed by a schedule of daily treatment. The patient is placed on a treatment couch and then radiation doses are applied from multiple directions to the pelvis. This allows EBRT to be done on an outpatient basis. Usually, the treatment is delivered five days a week for 4 to 6 weeks. Small amounts of radiation are administered daily rather than using fewer large doses. This enables reduction of tissue damage surrounding the tumour. Normal cells can recover during weekend rests.
Intensity-modulated Radiation Therapy (IMRT)
IMRT is a newer EBRT technique which uses numerous intensity levels via intensity-modulated beams (D’Souza et al., 2012). In these intensity-modulated beams, the direction off any single beam or placement of any single source can be varied (D’Souza et al., 2012). This enables achievement of narrow margins of both dose distributions and dose gradients. This is difficult with conventional and 3-D modes (D’Souza et al., 2012, Light, 2007). Flexibility in dose administration is achievable with IMRT and is seen as a major advance in radiation therapy since it permits higher doses to be given whilst sparing normal tissues (Light, 2007). Intensity of beams is equal irrespective of tumour thickness in conventional therapy. In IMRT, the intensity of the beam can be varied along the treatment field based on the tumour thickness. The beam is stronger where the tumour is thicker and lighter where the tumour is thinner. Thus unnecessary radiation is eliminated (Life Bridge Health, 2014).
The course of treatment in IMRT lasts five to eight weeks at the frequency of five days a week. The patient is in the treatment room for 15-30 minutes for each radiation session. Both EBRT and IMRT are painless (UCFS Medical Centre, 2014).
Further studies are evaluating IMRT for treating gynaecological cancers (D’Souza et al., 2012). IMRT is also used to treat rectal (Ng et al., 2012; Brooks et al., 2013) and anal cancers (Menkarios et al., 2007; Bazan et al., 2011).
Vaginal Brachytherapy (Internal Radiation Therapy)
Brachytherapy (brachy=Greek for short distance), also referred to as internal radiation or implant therapy, refers to the temporary or permanent placing of a radioactive source very close to or in contact with the targeted tissue (Moore-Higgs, 2007). Brachytherapy works by providing a high dose of radiation to a specific tumour volume with a quick decline in dose to bordering normal tissues (Moore-Higgs, 2007).
Brachytherapy can be combined with EBRT, surgery, or chemotherapy if required. It is used for enhancing control of local disease, and to treat high risk tumour recurrence areas, improve comfort with recurrent disease, safeguard vital organ function, and save normal surrounding tissue from damage (Moore-Higgs, 2007).
Either a High Dose Rate (HDR) or a Low Dose Rate (HDR) is possible in Brachytherapy/internal radiation. The radiation can be delivered with a vaginal cylinder applicator (see Figure 3 below and Figures 5, 6 and 7) or an applicator that treats the cervix and the uterus independently (Oncolink, 2006).
For the vaginal brachytherapy, women are treated in a lead-lined room. After positioning the cylinder properly, the radiation technician takes x-ray images or CT scans to verify the placement of the cylinder (Oncolink, 2006) (see figure 4). On calculation of the radiation dose by the physicist and radiation therapy technician the treatment machine directs the radioactive sources to the applicators for the required duration. During the process, women may feel vaginal pressure and experience marginal discomfort. If tandems and ovoids (see figures 4, 5 and 6) are used gauze packing is inserted in the vaginal vault to prevent movement of the applicators. In some cases, contrast (barium) may be inserted in the rectum using a small tube. The use of a Foley catheter and the rectal contrast facilitates x-ray examination so that the absorbed radiation dose by the bladder and rectum can be established.
Radiation exposure to others is averted by not allowing anyone into the treatment room. During this time, video cameras and two-way microphones assist monitoring the treatment. The duration of treatment time can vary from 5 to 20 minutes. After achievement of the treatment dose, the source is extracted into the HDR machine. A physicist then checks to ensure that no radioactivity exists in the woman’s body or outside the machine. Then the applicator is removed by the physician (Oncolink, 2006).
(Nucletron B.V., 2014)
If HDR is not appropriate, low dose rate (LDR) brachytherapy may be recommended. In LDR brachytherapy, the patient is anesthetised before the insertion of the radioactive material as in the case of HDR. However, this procedure is done under in-patient conditions varying from 2 to 3 days. During the time the radioactive source is placed vaginally, friends and family are not allowed to visit, to avoid their radiation exposure. The duty times of the nurses are also controlled for the same reason (Oncolink, 2006).
(Varian Medical Systems, 2014)
(Mayo Clinic Health Library, 2014)
(UC San Diego Moores Cancer Center, 2014)
18.104.22.168 General side effects of PRT
Although radiation therapy by itself is painless, varying degrees of acute side effects are caused by higher radiation doses, usually restricted to the area of treatment. These symptoms may appear during treatment or immediately after, during the first few months or years after the treatment (the long-term or late side effects) or following the re-treatment (cumulative side effects) (Vogel, 2007). These side effects vary in their type, gravity, and permanence depending on the organs receiving the radiation, and treatment and patient factors. The radiation considerations are: type of radiation used, total dose applied and its fractionation and concurrent chemotherapy if used. These side effects can be expected and predicted.
The main acute side effects of PRT include fatigue and skin irritation. The skin irritation is similar to moderate sunburn in some instances. The irritated skin heals, but in some instances is not as supple as before (“Radiation therapy”, 2014). The fatigue often starts during the course of treatment itself and it can last for weeks, even after the end of the treatment.
Damage to the epithelial surfaces
The area being treated may determine any damage to epithelial surfaces, such as mucosa of the skin and vagina (Incrocci & Jensen, 2013; Johnson & Miles, 2010), bowel and ureter. The renewal rate of epithelial cells determines the speed of damage and time taken for recovery. In typical situations, the skin starts to get painful and go pink many weeks after PRT treatment (“Radiation therapy”, 2014). The effect may reach its zenith during the first week after the end of radiation therapy and lasts another week leading to possible break down of the skin. In spite of the thinning and weeping of skin (moist desquamation) becoming uncomfortable, recovery is usually fast (“Radiation therapy”, 2014). In areas of the skin where there are normal creases in the skin (e.g. the groin), these reactions are worse. Swelling of soft tissues (edema or oedema) is a common inflammation condition. This sometimes causes problems during radiation therapy (“Radiation therapy”, 2014).
Almost all patients show signs of acute enteritis after radiation therapy to any one of abdomen, pelvis, or rectum (National Cancer Institute 2014 – Gastrointestinal complications Health Professional Version: Radiation Enteritis). Enteritis is the term for inflammation of the small intestine and the symptoms include abdominal pain, cramping, diarrhoea, dehydration and fever (Dugdale & Longretch, 2009; MedlinePlus Medical Encyclopedia cited in “Enteritis”, 2014; National Cancer Institute 2014).
Typical intestinal symptoms with radiation treatment to the lower bowel (e.g. in the rectal and anal cancer radiation field) and pelvic structures (e.g. female genital tract)) include diarrhoea, soreness, and nausea (“Radiation therapy”, 2014).
The sensitivity of gonads (ovaries and testicles) to radiation is very high. In women, direct exposure to most commonly applied radiation doses reduces or even stops the capacity of the ovaries to produce ovum (eggs). Therefore, in the design of treatment planning, dose to gonads is excluded or at least minimised if they are not the main treatment areas (“Radiation therapy”, 2014). Saving at least one gonad from radiation can avoid infertility (“Radiation therapy”, 2014).
Areas that have been treated may exhibit side effects for periods lasting months to years after treatment, but these side effects are usually limited to the area that has been treated. Such late side effects are mostly attributable to damage caused to blood vessels and to connective tissue cells (“Radiation therapy”, 2014). Fractionating treatment into smaller parts reduces many late effects (“Radiation therapy”, 2014).
Tissues treated with radiation show diffuse scarring which makes the tissues less supple over time (“Radiation therapy”, 2014).
Epilation (hair loss)
High doses of radiation above 1 Gy can cause epilation on any hair bearing skin (“Radiation therapy”, 2014). The absorbed dose is the energy absorbed per unit weight of the organ or the tissue. The unit of expression for this is gray (Gy). Permanent hair loss can be caused by a single dose of 10 Gy; but if the dose is fractionated, permanent hair loss is delayed till the total dose exceeds 45 Gy (“Radiation therapy”, 2014).
Months to years after the completion of treatment, chronic radiation enteritis may be detected. It may also begin as acute enteritis and may continue after treatment ends. The probability of persons treated with radiation to the abdomen developing chronic problems is about 5% to 15% (National Cancer Institute, 2014).
After pelvic radiation, the naturally moist vaginal mucosa may become dry (“Radiation therapy”, 2014).
In lymphoedema, localized fluid retention and tissue swelling occur and are manifested in the radiation area with PRT in the form of swollen legs (see Figure 8). Damage to the lymphatic system during the radiation treatment can lead to this symptom (“Radiation therapy”, 2014).
(Lymphedema Therapy, 2014)
Radiation therapy to pelvic organs may lead to long-term effects on the rectum such as bowel urgency, bleeding and diarrhoea (“Radiation therapy”, 2014). Cystitis (bladder infection) is also known to occur as a result of pelvic radiation therapy when the bladder is affected (“Radiation therapy”, 2014).
In summary, the cancers which are the focus of this study (GC’s, especially EC and CC (VC and VUC relatively rare) and female RC (AC is rare)) are relatively prevalent conditions, with serious consequences, and for which treatment induces serious side-effects. Whilst the overall and general side effects of PRT and other treatments have been briefly described above, the main focus of the current study is on the development and evaluation of a study-designed psychoeducational psychosexual PRT rehabilitation booklet which deals with post PRT physical vaginal and sexual changes for women. Hence an in-depth discussion of the physical and then sexual changes post PRT follows below in Chapter 2.
To inform this chapter, databases were searched including Medline, Web of Science, Science Direct, CINAHL, MEDLINE (PubMed) and PsycINFO. The search terms used were: vulvar cancer, vaginal cancer, cervical cancer, endometrial cancer, female anal and rectal cancers, pelvic radiation treatment, prevalence, incidence, vaginal dilators, sexual side effects, anxiety, depression, posttraumatic stress disorder, psychological adaptation/adjustment, health related quality of life, supportive care needs, and information needs. Other resources were searched such as reference lists of identified papers, reference lists of radiation/oncology books for the relevant cancers, conference abstracts, and the ‘related articles’ feature in databases such as PubMed.
In this chapter, the vaginal and sexual side effects of PRT, which are integral to the present research, will be outlined, along with their impact on quality of life. Leading on from this, the main strategies for addressing the physical side effects of PRT to improve sexual functioning will be presented. The next section will present evidence of women’s psychosexual/ information and supportive care needs, and barriers to effective doctor-patient communication on this topic. The final section of the chapter will discuss the latest research with regards to information resource development and provision in this area. The study aims and hypotheses will conclude this chapter. Kotronoulas et al., (2009) note that all people have a sexual facet which persists through different stages of their cancer passage. As discussed previously, for women with the pelvic cancers being examined in the current study (cervical, endometrial, vaginal, vulvar, rectal and anal), treatment can involve radical pelvic surgery (not current practice for anal cancer) often in conjunction with primary and/or adjuvant radiotherapy and chemotherapy (Schover, 2005; Breukink et al., 2009; Hassan & Cima, 2007). As a result of these invasive therapies, in particular PRT, profound physical changes in the areas of the body with which a woman defines herself sexually can occur. These effects have particular implications for sexual functioning and adjustment post PRT.
The following sections will provide a more detailed overview of: i) post-PRT (a) physical changes, (b) post PRT sexual changes and (c) quality of life and psychological outcomes of sexual dysfunction; ii) physical interventions to improve physical/vaginal and sexual functioning; iii) sexual information needs for women with gynaecological and anorectal cancer; iv) barriers to doctor-patient communication; v) potential interventions/resources to improve psycho-educational information and support to patients, and their barriers/facilitators.
Radiation to the female pelvis can affect sexual function in two ways: damage to the epithelium of the vaginal canal and premature ovarian failure (Shell, 2007). Implications of PRT physical vaginal changes will be discussed separately below only in the instance where they may vary by cancer type.
Epithelium line surfaces and cavities of structures throughout the body. Its function is to protect, secrete, selectively absorb, and for transcellular transport and for detection of sensation. (“Epithelium”, 2014).
22.214.171.124 Main radiation physical damage to the vaginal canal in gynaecological and female anorectal patients: vaginal toxicity and stenosis
Radiation toxicity refers to the health consequences of exposure to high amounts of ionising radiation appearing within 24 hours. The symptoms can begin within one or two hours of radiation and can last for several months (Donnelly et al., 2010; Xiao & Whitnall, 2009). As per its definition, radiation toxicity refers to acute medical problems and does not include the symptoms that evolve after a prolonged period. But similar symptoms may appear within months to years after radiation treatment (Reeves & Ainsworth, 1995). The exact onset and type of symptoms are dependent on the radiation exposure (“Acute radiation syndrome”, 2014).
As noted previously, external pelvic radiotherapy (EBRT) and internal vault/intracavitary brachytherapy can result in significant vaginal changes such as stenosis (narrowing) and agglutination (“glue-like” adhesions resulting from internal scar tissue). If adhesions are not regularly broken down skin tightening and, shortening, narrowing and for some women, entire destruction of the vagina might transpire (Decruze et al., 1999; Gosselin et al., 2000). Vaginal stenosis can prevent adequate pelvic examinations, potentially affecting the ability to detect new cancer and/or recurrence, as well as potentially leading to sexual dysfunction and lowered quality of life (Johnson & Miles, 2010; Bahng et al., 2012; Bergmark et al., 2002). Though vaginal stenosis is a common side effect of PRT for women with gynaecological and colorectal cancer there has been little focus on it in the literature necessitating further study (Wolf, 2006). Wolf (2006) further argues that colorectal patients have received little attention in this regard compared to cervical/gynaecological cancer patients. Wolf (2006) notes this may be as a consequence of PRT being a treatment option for longer in cervical/gynaecological cancer (60 years versus 30 years) and female colorectal patients not being treated by gynaecologists who may focus to a greater degree on sexual/vaginal changes. As will be discussed later in this chapter, whilst this may be the case, the focus on post PRT vaginal/sexual changes is also often not optimal for women with gynaecological cancer either (Bahng et al., 2012, Carter, 2011; 2013).
Although no consensus exists with regards to the definition or a measurement tool for vaginal stenosis (Miles et al., 2012), the International Guidelines for Vaginal Dilation after Pelvic Radiotherapy recommend the following “grade 1-3 in which grade 3 incorporates vaginal narrowing or shortening that interferes with inserting tampons, with sexual activity or physical examination” (Miles et al., 2012, p. 7).
The incidence of vaginal stenosis as a side effect of PRT is reported to range from 1.2% to 88% in gynaecological cancer patients, with a substantial variability due to factors such as type (internal or external and/or combination of both), dose and volume of radiation administered and surgery (Miles et al., 2012, Brand et al., 2006; Sorbe et al., 2012; Nout et al., 2012; Bahng et al., 2012). As noted in the paragraph above there is no consensus on the standards and guidelines for assessing stenosis. The variability in the assessment methods might explain the large variability in the rates of stenosis. By contrast to the above reporting of the incidence of stenosis in gynaecological cancer patients, the number of anal and rectal patients developing post PRT vaginal stenosis is not well documented (Miles et al., 2012). Furthermore, Miles et al. (2012) highlight that there have been extensive modifications in the treatment of rectal and anal cancers, such as, radiation type and dose which potentially confound the measurement and prevalence of vaginal stenosis.
Women’s experiences of vaginal stenosis following PRT are inconsistently reported in the literature. For instance, Nori et al.’s (1994, cited in Miles et al., 2012) study investigated the impact of vaginal stenosis on QOL and reported it being a ‘minor complication’, whilst Andersen et al. (1991, cited in Miles et al., 2012) reported women finding shortening of the vagina to be devastating. Many studies suggest a link between vaginal stenosis, dyspareunia severity and sexual dysfunction (Miles et al., 2012). Miles et al. (2012) note that this is a subjective issue since some women appear to be less disturbed by significant damage to their vagina whilst others are substantially impacted and experience longstanding psychosocial and sexuality-related bereavement from relatively minor damage/vaginal change. Thus, the psychosexual effects of vaginal stenosis/vaginal changes are complex and multifaceted as will be discussed later. Physical changes may not be the only cause of sexual dysfunction for women post PRT for gynaecological and anorectal cancer.
Radiation-induced Sexual Dysfunction
Radiation-induced sexual dysfunction should be contextualised with in sexual dysfunction in women in the general population, which is deemed common (Shifren et al., 2008; Najman et al., 2003). Prevalence rates estimates of 43% have been reported in the U.S. (Addis et al., 2006; Bancroft et al., 2003) and the United Kingdom (Nazareth et al., 2003; Dunn et al., 1998). Prevalence rates of 41% were found in Australia (Dunn et al., 2000). Najman et al.’s (2003) study 60.5% of Australian women reported a symptom of sexual difficulty within the last year, with 19.7% of women reporting more serious sexual dysfunction. In another Australian population based study Richters et al., (2003) found that for women lack of sexual interest and anorgasmia were the most frequent sexual problems. The aforementioned rates of sexual dysfunction in the general population need to be taken into account when discussing the rates of radiation-induced sexual dysfunction, discussed below.
I. Radiation-induced sexual dysfunction in gynaecological cancer patients
In the gynaecological cancer setting, radiation-induced effects contribute to the development of sexual dysfunction in a reported 49-79% of affected women (Munro et al., 1996). Many studies have reported major changes to levels of sexual desire/activity, anorgasmia, and decreased overall satisfaction with sexual life in the months and years following radiotherapy (Frumovitz et al., 2005; Jensen et al., 2004b; Juraskova, 2009; Lindau et al., 2007). In view of upwards of 40% of gynaecological cancer patients reporting chronic post-treatment sexual difficulties, it is likely that sexual and relationship dysfunction persists when other areas of adjustment such as mental health have normalised (Katz, 2005; 2009; Schover, 2005; Wolf, 2006; White, 2008).
For women who are treated for cervical cancer, the effects of PRT have a specific effect on sexuality (Chase et al., 2008). Cervical cancer patients may experience some of these effects to a greater degree, compared to other women undergoing PRT since they are generally younger and premenopausal (Bruheim, 2010a). Jensen et al. (2003) found sexual dysfunction and adverse vaginal changes two years post radiotherapy for cervical cancer. In their findings, more serious sexual dysfunction was observed among women only treated with radiation therapy in contrast to surgery-only patients during a follow-up of 2 years. The effects ranged from 85% of irradiated women reporting no interest in sex, 55% exhibiting dyspareunia, and another 50% exhibiting vaginal shortening. These sexual difficulties were statistically worse compared to women’s pre-treatment sexual function and to age-matched controls (Jensen et al., 2003). Similarly, Frumovitz et al. (2005) found more sexual dysfunction and vaginal problems five years post radiation treatment than in women who had radical hysterectomy and lymph node dissection, in cervical cancer patients. On the other hand, Bergmark et al. (1999) found no differences on the prevalence of vaginal shortness, inelasticity, or lubrication post PRT (internal or external) compared to surgery in early stage cervical cancer patients.
For women with endometrial cancer, high dose brachytherapy can result in extensive sexual problems (Friedman et al., 2011; Greimel et al., 2009; Bahng et al., 2012; Onujiogu et al., 2011), with over a third (Cochran et al., 1987) to a half of patients (Friedman et al., 2011) not resuming sexual activity after treatment. Those who remain sexually active report decreased vaginal lubrication, pain, bleeding and difficulty reaching orgasm, with many women finding intercourse troubling as their vaginas were too reduced in size (Friedman et al., 2011). Of concern, sexual dysfunction in these women may be underreported (Goncalves, 2007), with some finding that these rates are closer to 80% (Damast et al., 2012). Therefore, endometrial cancer survivors, commonly thought to have a low risk, may, in reality suffer from ‘severe’ sexual dysfunction (Onujiogu et al., 2011, p. 356).
Furthermore, PRT combined with surgery has been found to have a greater impact on sexual function than only surgery (Frumovitz et al., 2005, Greimel et al., 2009). In a longitudinal study of postoperative PRT in endometrial carcinoma (PORTEC-1), it was noted that in women who had pelvic EBRT after total abdominal hysterectomy, long-term symptoms of bowel and bladder, reduction in sexual enjoyment and increased vaginal dryness and a negative Health Related Quality Of Life (HRQOL) were observed in comparison to those who had only surgery (Nout et al., 2011).
As vaginal cancer cases are rare, most studies were done with small samples (Hiniker et al., 2013; Tran et al., 2007). Little data are available on late radiation toxicities of the different radiation treatments in this context (Lian et al., 2008; Tran et al., 2007). Lian et al. (2008) found that 68% of women in their study (n=68) had late radiation toxicity of vaginal morbidity, but minimal bladder (4.6%) and bowel toxicity (4.6%). The most frequent vaginal symptom was vaginal stenosis. Of those with stenosis, 30.9% had grade 1, 21.8% grade 2, 5.5% had grade 3 (meaning severely shortened vagina) and 5.5% had grade 4 toxicity (involving either vesico-vaginal fistula or recto-vaginal fistula). In this study vaginal morbidity was highest in the group undergoing both EBRT and brachytherapy (82.1%) and lowest in the brachytherapy alone group (0%). Higher doses of radiation were correlated with more frequent vaginal toxicity in Lian et al.’s (2008) study. Dixit et al.’s study, (1993, cited in Lian et al., 2008) gave some support to these findings with a higher risk of vaginal toxicity, though not statistically significant, in patients undergoing both EBRT and brachytherapy.
Vulvar cancer is relatively rare; as such there is a significant lack of literature on treatment-related side effects (Aerts et al., 2014) and psychosexual outcomes for women (Barlow et al., 2014; Pilger et al., 2012). However, Weijmar Schultz et al. (1990) examined psychosexual functioning longitudinally post radiation treatment for vulvar cancer and found a high risk for vaginal stenosis at the vaginal opening with considerable reduction in genital feeling throughout arousal and orgasm with no symptom diminishment over time. Moreover, Hazewinkel et al. (2012) observed a negative correlation of sexual function of women (n=120), treated for vulvar cancer with age and with adjuvant inguinal (lymph node) radiotherapy. The effect of age was manifested in the decrease of “arousal” and “desire”. However, having a partner had a positive effect on ‘satisfaction’. These authors pointed out that when fibrosis results from adjuvant treatment, there is an increase in local morbidity (Hazewinkel et al., 2012). From multivariate analysis, a negative relationship between adjuvant radiotherapy and orgasm was observed (Hazewinkel et al., 2012). Aerts et al. (2014) citing a van Doorn et al.’s (2006) Cochrane Review, contend that, although vulvar cancer treatment has become more personalised and less extreme, the iatrogenic effects of surgery, such as the impact on nerves and blood vessels related to anal, urinary and sexual function may be more pronounced when combined with radiotherapy. Women with vulvar cancer are at high risk for sexual morbidity given the condition and its treatments (Jefferies & Clifford, 2012; Hazewinkel et al., 2012; Aerts et al., 2014).
II. Radiation-induced sexual dysfunction in anorectal cancer patients
Anal and rectal patients also report significant sexual dysfunction post PRT (Incrocci & Jensen, 2013, Wolf, 2006). Lange et al. (2009) found that 62% of women with rectal cancers noted new or aggravated sexual problems post treatment, whilst rates of sexual activity among these women dropped from 51% pre-treatment to 33% three months post treatment, with a further reduction to 18% two-years post treatment. The only risk factor found for sexual dysfunction was preoperative radiotherapy (Lange et al., 2009). Gervaz et al. (2008) suggest that sexual function in rectal patients does not improve but stabilises over time ranging from 6 months to 2 years (Gervaz et al., 2008). Admittedly, little is known about sexual dysfunction for women with rectal cancer with further research needed in this area (Ho et al., 2011; Incrocci & Jensen, 2013).
In 55% of women with anal cancer, poor sexual function scores were found with respect to inadequate sexual interest, arousal difficulties, incapability to relax and enjoy sex and difficulty in reaching orgasm in Das et al.’s (2010) study. These authors contend that further research is required in female patients with anal cancers for better understanding of the sexual changes that are consequent on radiation to the internal and external genitalia (Das et al., 2010).
Clinicians are inclined to under report anal cancer survivor’s sexuality-related symptoms (Vistad et al., 2008), however, Bentzen et al. (2013) contend that a large number of patients may experience post PRT effects, since the radiation dose is high and the sexual organs and anal sphincter are in the vicinity of the target volume of radiation for patients with anal cancers. Increased awareness of side effects is needed for better management of late effects for anal cancer survivors (Bentzen et al., 2013), who remain a neglected cohort with regards to late PRT effects, and sexual dysfunction in particular (Aggarwal et al., 2013).
Additionally, there is limited understanding of the effects of PRT on sexuality for endometrial cancer patients with rates of sexual dysfunction underestimated and understudied, and similarly for anal cancer patients (Incrocci & Jensen, 2013), which reflects a paucity of research in this area.
Body image, identity disturbance and relationship effects with regards to sexuality post PRT for women with gynaecological cancer and anorectal cancer
Gynaecological and anorectal cancer and its treatment are known to have an extensive impact on body image and sexual self-perception (Incrocci & Jensen, 2013, Carpenter et al., 2009). Some of the factors linked with psychological adaptation and QOL both immediately post-treatment and during survivorship include sexuality and body view issues (Ashing-Giwa et al., 2010, Lindau et al., 2007).
A review of the relevant literature indicates a growing disgruntlement that post cancer sexuality research focuses on the physical effects of gynaecological and female anorectal cancer treatment. Post-treatment effects are experienced not only at a physical but also a psychological level as sexuality is multidimensional; women treated for gynaecological and anorectal cancer experience anxiety, depression (Petersen & Quinlivan, 2002; Dunn et al., 2012), psychological distress (Dunn et al., 2012; Philip et al., 2013), low self-worth (Holmes et al., 2005; Baumann et al., 2013) self-representation, identity and body view breakdown (Carpenter et al., 2009; Gilbert et al., 2011). Furthermore, certain effects may extend beyond the individual patient to involve their partner. These effects may include fear of pain during intercourse; fear that sexual activity will cause recurrence, anxiety relating to bladder and bowel dysfunction whilst having sexual activity, and breakdown in couple communications about sexual closeness (Juraskova et al., 2003; Philip et al., 2013; Gilbert et al., 2011).
Often women find it difficult to perceive themselves to be sexually attractive during the treatment and after. Gynaecological cancer patients have reported a feeling of no longer being a woman, for instance, due to treatment-induced ovarian failure/infertility (Gilbert et al., 2011; Stead et al., 2007). Therefore, the goals of care and rehabilitation should include detection and inclusion of body-image disruption factors (Pilger et al., 2012). Psychological effects of gynaecological cancer and its treatment are primarily related to a range of sexual symptoms. These symptoms include disfavoured body image associated with gaining weight, scars and marking from EBRT radiation beam placement (Gilbert et al., 2011; Burns et al., 2007; Lamb & Sheldon, 1993; Butler et al., 1998), loss of feeling womanlike (Juraskova et al., 2003; Rasmusson et al., 2008), and feeling unattractive (with one woman reporting feeling a ‘monster’) as a result of hair loss (Stead et al., 2007).
Similarly, Panjari et al. (2012) also cited disfavoured body view as a factor affecting sexual dysfunction in female rectal cancer patients along with fatigue, depression, loss of independence, and relationship changes. For instance, couples often experience changes of social roles during treatment which can jeopardise each person’s sense of individuality and worth (National Cancer Institute, 2013). Partner participation in physical care can have negative impact on sexuality. Such effects have been reported in the case of stoma care in colorectal cancer patients (National Cancer Institute, 2013). Younger couples affected by female rectal and anal cancer have been found to be more at risk of problems related to change or new domestic roles associated with treatment. They also report having more concerns about the effects of these on their intimacy and sexual relationship (Das et al., 2010).
There are contradictory findings on the effects due to gynaecological cancer and its treatment in women and their psychosexual/sexual relationships. Some couples report a positive effect on their relationship (Lamb & Sheldon, 1993; Butler et al., 1998) whilst others find that women’s sexual difficulties caused deterioration in the couple’s relationship (Burns et al., 2007; Bergmark et al., 1999). Some negative effects include blaming partners for their cancer, experiencing physical and psychological trauma and emotional detachment related to sexual activity, fear of cancer transmission, and concern of the partner about hurting the woman being translated as rejection or lack of interest (Juraskova et al., 2003).
A major issue with regards to sexual difficulties of post gynaecological cancer cases is communication in couples (Stead et al., 2007; Juraskova et al., 2003). Resumption of intercourse does not necessarily imply satisfaction/enjoyment and may occur without couples explicitly communicating their desire (or non-desire) for resuming intercourse. Some women feel, for instance, a pressure to continue sexual activity to maintain the relationship driven by fear of losing their partners or by feeling markedly dependant on them (Gilbert et al., 2011). Silencing themselves has been noted as a coping mechanism among women and their partners. This may further exacerbate their difficulties particularly due to lack of sexual information and support from clinicians (Stead et al., 2003). Based on this, researchers argue that prioritising sexuality in this setting would legitimise women’s and their partners’ difficulties and improve couples’ communication (Stilos et al., 2008; Weijmar & Schultz et al., 1992).
In summary, this section drew attention to the psychosexual aspects of post PRT recovery, highlighting that PRT not only impacts on physical sexual functioning, but can affect body image and relationship dynamics. The section below will present data broadly on the effect of sexual difficulties on quality of life and on psychological well-being.
Women’s psychosexual wellbeing, that is, their perception about their own sexuality, has been found to have a bearing on how they cope with treatment side effects. Further, sexual difficulty is found to be associated with lowered psychological adjustment and QOL (Carter et al., 2013; Carpenter et al., 2010; Levin et al., 2010) during and after treatment (Le et al., 2009 cited in Carter et al., 2013) and in the survivorship literature (Ashing-Giwa et al., 2010; Lindau et al., 2007). In gynaecological cancer patients, controlling for younger age, fewer years of education, and greater fatigue and sexual morbidity co-varied with greater depression and anxiety of body changes in conjunction with reduced psychological adjustment (Levin et al., 2010).
For example, treatment induced menopausal symptoms such as vaginal dryness is correlated with depression and elevated distress (Carter et al., 2010; 2013). Similarly, Health Related Quality Of Life (HRQOL) among patients who have rectal cancer and received PRT was found to be affected by sexual dysfunction postoperatively, although no serious effect was found on global QOL (Marijnen et al., 2005). In another study (Levin et al., 2010) conducted with 186 partnered women (mean age 55 years), there was positive and moderate correlation of sexual morbidity with traumatic stress (r = 0.30) depression (r=0.34) and body image (r = 0.25). In the Medical Outcomes Study - Short Form 12, moderate correlations emerged for correlations with physical health (r = 0.34) and with mental health (r = 0.25). It was also found that 48% of the depression variance, 26% of the stress due to body change variance and 31% of the psychological quality of life variance was accounted for by the sexual morbidity. Thus it appears that sexual morbidity may be an additional psychological worry for women with gynaecological and anorectal cancer. Addressing sexual morbidity may therefore substantially improve psychological health (Levin et al., 2010).
Furthermore, sexual dysfunction continues to impact on quality of life long-term, after other quality of life impacts of cancer treatment have resolved. Allal et al.’s (2005) found that although one year after combined treatment for locally advanced rectal cancer (cancer had grown outside the organ from where it started but not spread to distant parts of the body yet and may or may not be curable) some aspects of QOL had improved, but there was a decrease in sexual function and body image (Allal et al., 2005). Similarly in their study addressing long-term QOL after PRT for anal cancer, Das et al., (2010) found that patients had high median global QOL scores suggestive of a better QOL as measured by the FACT-C (higher scores indicate a better QOL), except for those pertaining to sexual function.
Emotional morbidity may both be cause and effect of reduced sexual functioning. Anxiety and depression, the two most common forms of emotional morbidity after cancer had detrimental effects on sexual functioning (Carpenter et al., 2010; Levin et al., 2010; Le et al., 2009). Psychotropic medications used to treat psychiatric/psychological effects of having cancer may further impact on sexual function.
In summary, PRT has an extensive impact on sexual functioning in gynaecological and anorectal cancer patients. The prevention and treatment of sexual morbidity has the potential to facilitate enhanced psychological adjustment and QOL for gynaecological and anorectal cancer patients. Improving sexual outcomes should be a focus of supportive care. The following section reviews the most common physical intervention strategies that have been developed to improve sexual outcomes. Subsequent sections will explore informational and psycho-sexual interventions.
Vaginal health is imperative for all women whether sexually active or not (Carter et al., 2013). Vaginal dryness, discomfort, and stenosis can inhibit sexual activity, and promote anxiety about gynaecological appointments, which in turn gives rise to painful pelvic exams and potential noncompliance with follow-up care (Carter et al., 2013). Vaginal dilators and sexual intercourse may avert shortening of vaginal length and impairment of sexual functioning after brachytherapy (Jeffries et al., 2006). The basis for this thinking is that, after PRT, with scheduled dilation, the vagina can maintain its patency whilst healing, in turn allowing for successful pelvic vaginal examinations and maintaining/preserving optimal sexual function (Bahng et al., 2012). According to the current International Guidelines for Vaginal Dilation after Pelvic Radiotherapy (Miles et al., 2012, p. 7) the current rationale for dilator use is to:
Assist sexual intercourse recommencement after PRT
Avert adhesions advancement to fibrosis and stenosis largely one year post PRT if women are not having penetrative intercourse and wish to maintain a patent vagina
Allow ongoing clinical follow-up pelvic examinations and/or for clinician cancer surveillance and detection of potentially treatable recurrence
Possibly lower sexual problems such as dyspareunia
Afford the opportunity for the communication of sexual difficulties/fears/mistaken beliefs about PRT
Lessen harm to tissues
Assist psychological welfare enhancement
Dilator use may be particularly important for postmenopausal, older women, with the thinning of vaginal mucosa making them more susceptible to toxicity (Bahng et al., 2012).
Evidence for the efficacy of vaginal dilators is mixed. Johnson & Miles (2010) conducted a Cochrane Review on vagina dilator use for women undergoing PRT. Johnson & Miles (2010) conducted a systematic review of vaginal dilation to prevent damage from PRT (Johnson and Miles, 2010). Both reviews concluded that good quality evidence was lacking to support acute radiation phase post-treatment dilation therapy. However, Level 2+ and Level 3 evidence (as defined by the International Guidelines, see below in Table 1) suggests that using vaginal dilators post the acute inflammatory phase (Johnson & Miles, 2010, p.7) could treat vaginal stenosis after it had happened. There is also no evidence that quality of life is enhanced by dilator use facilitating more comfortable pelvic examinations and hence providing life-prolonging treatment (Miles et al., 2012). Bahng et al. (2012) found that vaginal dilator use at least two to three times per week was significantly linked with a decreased risk of vaginal stenosis in endometrial cancer patients. Thus, while using vaginal dilators post PRT may lessen the (potentially irreversible) physical damage to the vagina; further evidence regarding their efficacy is needed.
Table 1: International Guidelines on Levels of Evidence for Vaginal Dilation after Pelvic Radiotherapy
(Miles et al., 2012, p. 5)
Bahng et al. (2012, p. 671) note that although there is little empirical data to support dilator use, there is the “common wisdom” amongst clinicians of PRT vaginal/sexual side effects and the benefits of vaginal dilator use (Oncolink, 2006); hence they are commonly recommended in guidelines such as those published by the American Cancer Society (2014), Sydney Gynaecology Group Sydney Cancer Centre Oncology Group (2014), Australian Government Cancer Australia (2012). For instance, the American Cancer Society (2014) advocates using vaginal dilators post PRT for prevention of vaginal stenosis as does the UK National Forum of Gynaecological Oncology Nurses, 2005 (cited in Punt, 2011). Dilator provision is common in Australia, however information on their use is not standardised (Bonner et al., 2012; Lancaster, 2004).
Currently most recommendations on using dilators entail inserting a dilator two to three times per week to split up adhesions (Bahng, et al, 2012; Lancaster, 2004; American Cancer Society (2014); UK National Forum of Gynaecological Oncology Nurses 2005 cited in Punt, 2011; Miles et al., 2012). There is however a paucity of studies on optimal vaginal dilator-use frequency and length of time, and research is required to inform dilator instruction on long-term use (Punt, 2011).
The International Guidelines for Vaginal Dilation after Pelvic Radiotherapy (Miles et al., 2012, p. 11) suggest that women should be presented with vaginal dilation information to establish whether they would like to use it, since dilation may assist post-PRT sexual activity for those who would like to maintain or resume it. The authors of these guidelines argue that women who do not desire to maintain vaginal patency may choose not to undertake dilator use. They further suggest that vaginal dilation might be recommended to thwart adhesions forming between clinician follow-up visits in patients where adhesions have occurred in the past. This may be appropriate for any cancer treated with PRT that includes the vagina as in the case of endometrial, cervical, vulval, low rectal, anal and urological cancers. According to Miles at al., (2012) PRT dose and volume of the vagina treated may affect the gravity of possible vaginal stenosis, and might determine shape of the dilator to be selected.
126.96.36.199 Adherence to use of vaginal dilators
Despite guidelines recommending their use, the organised supply of dilators along with adequate information about their use is limited, and compliance is very low (Lancaster, 2004; Bonner et al., 2012).
For example, Law et al. (2013) examined vaginal stenosis as a late effect of external PRT and brachytherapy. Law et al.’s (2013) prospective study aimed to ascertain adherence and efficacy of vaginal dilator use as measured by the ability to return to pre-treatment vaginal dilator size at 12 months (Oncolink, 2006). Women with rectal (n=28), anal (n=35), endometrial (n= 45) and cervical (n=1) cancers were followed-up for one-year post PRT. Clinicians gave structured teaching to use dilators three times a week, regardless of frequency of sexual intercourse. Women kept monthly diaries of dilator size use and vaginal symptoms. At pre-PRT, 1, 6 and 12 months post-PRT, clinicians graded vaginal stenosis using CTCAE v3. Adherence was measured as the percentage of times patients used the dilator out of the number of times they were directed (3x/week X 52 weeks=156). Law et al. (2013) found that among 109 participants, aged 28-81 years (median = 58), over a 12-month period, the mean adherence with vaginal dilator use was 42%. Adherence was highest in the first quarter (58%), but fell to 25% by the fourth quarter. Predictors of adherence were disease type, treatment sequence and chemotherapy all at p<0.05. Rectal cancer patients were less prone to adhere to dilator use than anal and endometrial patients. Eighty-two percent of all patients returned to pre-PRT size at 12 months; of the 49% who reported a decrease in dilator size from pre-PRT to 1 month post-PRT, 71% were able to return to pre-PRT size at 12 months. Anal cancer patients were most prone to report a decrease in vaginal dilator size at 1 month post-PRT (77%), but 68% of these patients returned to baseline at 12 months. Disease type and greater adherence to dilator use at 6 months were associated with returning to pre-PRT size at 12months (both p <0.05). Thus, based on this prospective study, vaginal dilator use is an effective strategy in minimizing vaginal stenosis, but adherence at 12 months was poor. The author argues that further studies are needed to evaluate methods of enhancing adherence to use of dilator and to determine the required optimal frequency and optimum duration of dilator use .
Dilator compliance also appears to diminish the further from treatment patients are, which is of concern since PRT effect can occur 2 and more years post treatment (Punt, 2011; Bahng et al., 2012).
Despite the potential advantages of using dilators, women report specific impediments to using them post PRT (Cullen et al., 2013; Punt, 2011; White & Faithfull, 2006; Lancaster, 2004). Receiving limited or untimely information on the clinical and sexual importance of using dilators, uncertainty as a result of conflicting information provided, perception of use of dilators as boring and time consuming, not remembering to use dilators whenever required, negative experience perception about their use, embarrassment, the need for discretion with, for example, children around, and discomfort, anxiety, bleeding or pain in using the dilators are common barriers cited by women (Lancaster, 2004; Bonner et al., 2012, Friedman et al., 2011, Greimel et al., 2009; Wolf, 2006). Further obstructions to adherence include inconsistency in vaginal dilator use information within and between treatment centres; modesty, association with “sex toys”, attitudes that dilators are ‘not natural’, fear of injuring the vagina, treatment invasion reliving/reminder, emotional avoidance of thinking of cancer and treatment, aversion/fear of dilator, psychological turning away from dilator use as being unfamiliar and/or strange and/or repugnant, not front of mind with regards recovery, lack of interest in sex, and feeling no motivating reason to pursue/continue dilator use, and being provided dilators once stenosis had already occurred (Friedman et al., 2011; Cullen et al., 2012; Lancaster, 2004; Carter et al., 2011; Juraskova et al., 2003, Bonner et al., 2012).
As seen in the above list, attitudes to dilators, whether cultural or other, and values and beliefs affect vaginal dilator use (Cullen et al., 2012; 2013). Age has also been found to be a barrier with regards to vaginal dilator use compliance (Punt, 2011). There has been little research in to understanding low compliance and barriers to vaginal dilator use for women post treatment (Cullen et al., 2012; McCallum et al., 2012; Friedman et al., 2011). Bonner et al. (2012) (and others) are attempting to address this gap in the literature and have developed a model for reducing barriers to dilator use which will be discussed in the section below.
A recent Cochrane Review highlighted that a lack of evidence and controversy on the efficacy of dilator use may alter dilator provision practices in the future (see section 2.3.1 for Johnson & Miles, 2010). It is claimed that Australian health professionals are inconsistent in advising the recommended use of dilators for post-radiation rehabilitation and are often averse to provide any additional written information (Lancaster, 2004). Thus clear evidence to support use and training of clinicians in optimal communication about dilators may be one effective strategy to reduce barriers to using dilators.
Knowing about the clinical importance of using dilators to enable pelvic vaginal examinations to detect cancer recurrence was helpful for women in persevering with using dilators and in using them more frequently in an ongoing manner (Robinson et al., 1999; Cullen et al., 2012; 2013; Punt, 2011). Thus good information about the rationale for dilator use is helpful. Viewing dilator use as a continuation of treatment and as a facet of recovery helped reduce barriers to their use for some women and ‘fear of not using’ it once knowing about potential consequences such as vaginal stenosis and painful pelvic examinations encouraged their use (Cullen et al., 2012). Bonner et al. (2012) concurred and added the following strategies for reducing barriers found in their study: improving the belief of dilator efficacy, stenosis reminders and apprehension, coming to terms with routine and medical care use of dilators and highlighting the beneficial aspects allowed for their use.
However, many women were still not using dilators after knowing about the clinical importance thereof, either because they did not have a partner, they were no longer sexually active or their partner had physical difficulties. In Friedman et al.’s (2011) study adherers were more likely to be concerned about their sex life than non-adherers.
As a result of barriers reported by women in their study and their barrier reduction findings noted above, Bonner et al. (2012) developed a dilator use model. They used a widely used theory in conceptualising health behaviours, namely the Health Belief Model (Rosenstock, 1974; Janz & Becker, 1984) (see Figure 9 below). Bonner et al. (2012, p. 2311) designed the model with the view to it informing future research and interventions focusing on vaginal dilator use. The model is further intended to act as a foundation for helping women maintain their motivation to use dilators in an ongoing manner. The five main factors of this model are: action cues, modifying factors like demographics, specific health behaviour, perceived susceptibility and threats, benefits and barriers (Bonner et al., 2012, p.2312). They expound on each dimension as follows:
Cues to action: early information provision and continued dilator use follow-up, stenosis discussion before PRT, additional explanation at dilator provision ideally all would take place in prioritised nurse-led session with supporting written information to minimise information overload and ongoing medical examination examining and encouraging dilator use.
Benefits of dilator use: individualised according to women’s need, for instance sexual function or pelvic examination. Follow-up consultations can assess stenosis and frequency of use discussed with empathy and without judgement to foster open communication and minimise guilt/blame if stenosis has developed.
Barriers to dilator use: via various methods such as information provision, vignettes of others women’s positive experiences and helpful ways they included dilator practice in their daily lives may invite consistent use. Discrete and attractive packaging may improve acceptance and comfort of dilators.
Demographic and clinical factors: pretreatment relationship status and sexual occurrence had some relationship to dilator motivation and use frequency. Use of dilators declined after PRT and between follow-up visits even in women motivated for dilator use. This suggests the importance of medical consultations as an important discussion arena to continue using dilators when it is clinically important and is desired by women.
(Bonner et al., 2012, p. 2311)
Cullen et al.’s (2013) model corroborates Bonner et al.’s (2012) model and there are some additional factors they include in their version to reduce barriers to dilator use: introduce dilators early and in an open approach as a facet of an extensive treatment plan; provide the basis for their use stressing vaginal health safeguarding rather than sexual focus; clinician initiated conversations about dilator values, beliefs and emotional response to their use. Furthermore these authors argue that improving dilator accessibility and provision of psychoeducational resource supporting dilator use might reduce what might be frightening in their acquisition and improve adherence (Cullen et al., 2013; Friedman et al., 2011; Brand et al., 2012). Lastly, with regards to reducing vaginal dilator use barriers, Cullen et al. (2013) contend that standardising rehabilitative vaginal dilator use within healthcare units would guarantee the reception of consistent messages reinforcing their use across women’s healthcare teams.
Concluding this section, while vaginal dilation is commonly recommended after pelvic radiotherapy/brachytherapy to reduce the risk of vaginal stenosis/scarring, this recommendation is not routinely communicated or implemented in a standardised manner (Bahng, et al., 2012; Lancaster, 2004).
Whilst vaginal dilator use as a rehabilitation strategy is the main focus of the current study due to the potential clinical (surveillance/detecting new or recurrent cancer and vaginal health care by enabling pelvic examination) and sexual impact of vaginal stenosis post PRT, additional and important strategies to facilitate recovery will be briefly discussed below, namely lubricants/moisturisers and pelvic floor muscle exercises.
A significant number of women with gynaecological and anorectal cancer experience PRT-, chemotherapy- and/or surgery-induced premature menopause. Furthermore, women commonly experience an ongoing lack of interest in sexual relations and lack of lubrication post PRT which can be as a result of treatment induced menopausal symptoms (Jensen et al., 2004b; Schover, 2005; Sekse et al., 2010; 2013; Stilos et al., 2008; Bodurka & Sun, 2006). Low levels of oestrogen are linked with vaginal dryness and sexual adverse effects such as, pain, atrophy and itching which in turn can result in dyspareunia and bleeding during penetrative sexual intercourse and to lack of inclination for intercourse (Bodurka & Sun, 2006; Schover, 2005; 2008; Stilos et al., 2008; Audette & Waterman, 2010). Damast et al. (2012) found that sexual dysfunction was present in 80% of the endometrial cancer patients after high dose brachytherapy with lack of vaginal lubricant use found to be a contributing factor.
Improving vaginal dryness and discomfort has been found to enhance sexual interest; perceptions of arousal and ability to achieve orgasm (Carter et al., 2010).
Hormonal replacements can be prescribed by clinicians however women with hormone-receptive cancers (e.g. endometrial cancer patients) cannot be prescribed such treatment (Carter et al., 2013). Nonhormonal moisturisers and lubricants are commonly recommended for women with vaginal atrophy occurring as a result of PRT induced menopausal symptoms (Carter et al., 2010; 2013, Schover, 2005; Audette & Waterman, 2010), to re-establish lubrication and natural pH balance to the vagina and vulva (Carter et al., 2011). Vaginal moisturisers and lubricants are distinct from each other and have different functions which will be discussed below.
Vaginal moisturisers are over-the-counter non-hormonal products (e.g. Replens, see Figure 10 below), prescribed for vaginal health whether the woman is sexually active or not. They are used for hydration of the vaginal mucosa and restore/maintain pH balance several times per week. Vaginal moisturisers improve water balance for dehydrated tissues, delivering nutrients and in doing so assisting tissue elasticity (Carter et al., 2013). There is growing clinician and patient recognition of the benefits of these products for menopausal women (Carter et al., 2013). Loprinzi et al. (1997) and Caswell and Kane (2002) did not find any benefit of using Replens over using water or pectin-based lubricants. Replens did provide the same symptom relief as vaginal oestrogens in Nachtigall (1994) and Bygdeman and Swahn’s (1996) small trials. Carter et al. (2011) contend that regular use of vaginal moisturisers may be effective as opposed to the differences in product ingredients.
It is not unusual for women in this setting to require using moisturisers 3-5 times per week. For best absorption women are recommended to insert tampon shaped applicators or vaginal suppository moisturisers at night when going to sleep (Carter et al., 2011).
Women post gynaecological cancer treatments often require the use of both moisturisers and lubricants to prevent pelvic examination and sexual activity discomfort. The purpose of vaginal lubricants is for their liquid or gel to be dispensed in the areas of clitoris and labia minora and inside the entrance of vagina to reduce pain and dryness during penetrative sexual intercourse and for greater effect on the penis/vibrator to reduce friction and irritation (Carter et al., 2011). Water and/or silicone based treatments such as Sylk (see Figure 11 below) are recommended above chemically based products which may irritate sensitive skin affected by radiation and lack of oestrogen. Petroleum based products are not advocated since they have been known to cause infection.
Vaginal lubricants dispensed regularly and correctly have been found to inhibit post sexual activity irritation and mucosal tears which are also implicated in vaginal urinary tract infections (Carter et al., 2011).
(My Health Specials, 2014)
PRT is associated with numerous long-term side effects on pelvic organs (such as the sexual organs, bladder and bowel) however there has been little research on the adverse effects on pelvic floor function in the gynaecological (Hazewinkel et al., 2010a; 2010b; Tan et al., 2008) and anorectal cancer treatment setting (Andreyev et al., 2005; Ooi et al., 1999; Allgayer et al., 2005; Loos et al., 2013).
Studies (Rosenbaum, 2007; Goldfinger et al., 2009) have found that consciousness and control of pelvic muscles is a successful interventional aspect of vaginal pain. If, during sexual intercourse, women are able to keep these muscles relaxed (Tu et al., 2008) and on pelvic examination, they are less likely to experience pain from PRT treatment related vaginal degeneration (Carter et al., 2011). Carter et al. (2011) cited studies showing that increased blood flow to the pelvic floor by relaxing pelvic floor muscles has been found to have additional benefits, such as better sexual functioning (Lowenstein et al., 2010). Moreover, improved blood supply to the clitoral and genital area may have rehabilitation (Schroder et al., 2005) and improved arousal effects (Schover, 2005). Pelvic muscle control around the vaginal entrance can be achieved by using Kegel exercises. Physiotherapists can aid patients who have difficulty with these exercises by using biofeedback.
Vaginal dilators are ranked in size. These can also be used to increase vaginal comfort and to gain control over pelvic floor muscles (Carter et al., 2011). Women often reflexively tense pelvic floor muscles when they experience vaginal pain. This causes more pain and inhibits insertion leading to resistance, acute pain, tissue inflammation and exacerbation of vaginal atrophy. Vaginal dilators can provide feedback in learning to control tensing and for relaxing the pelvic floor muscles and thus minimise these problems (Schover, 1997 cited in Carter et al., 2011).
Unfortunately, there is a paucity of prospective, retrospective and longitudinal studies explicitly exploring the use of vaginal dilators, measuring physical changes/vaginal stenosis, and the potential clinical and psychosexual significance of dilator use for women of undergoing PRT for gynaecological and anorectal cancer (n=30) (Lancaster, 2004; Friedman et al., 2011; Bahng et al., 2012; Wolf, 2006; Brand et al., 2012). Thus a strong evidence-base for recommending dilators is lacking. In a recent Cochrane Review on vaginal dilator use for women undergoing PRT Johnson and Miles (2010) concluded that routine dilation during or after PRT may be harmful. Though this is rare, there is evidence of traumatic rectovaginal fistulae being associated with dilation (Hoffman et al., 2003 cited in Johnson et al., 2010) with resultant psychological effects (Hull et al., 2008; Miles, 2008 cited in Johnson et al., 2010b). As such, this potentially serious effect has to be recognised. Falk and Dizon (2013) note that although the efficacy of vaginal dilation has not been proven, with concerns raised by investigators, such as Johnson & Miles’ (2010), regarding the risk of genital tract fistula, they contend that there is currently no alternative to dilator use, besides surgery, for vaginal fibrosis/vaginal stenosis. Falk and Dizon (2013) note that fistula is a rare complication which may occur as a result of PRT even when dilators are not used.
Johnson & Miles (2010) found no reliable evidence showing that routine and regular dilator use prevents PRT-related late effects or QOL citing, for instance, study methodological flaws, small sample sizes and a lack of randomised controlled trials. They did conclude that gentle vaginal exploration might allow for the parting of the vaginal walls prior to them sticking together and that some women may benefit from using dilators once the inflammatory period had settled (2-8 weeks after radiation therapy), however, they found no good quality comparative data (Johnson & Miles, 2010). According to Johnson et al. (2010), although dilation might treat late effects of radiotherapy, its applicability to acute toxicity phase cannot always be assumed. Also, there is lack of good evidence for routine dilator use during treatment. Furthermore these authors contend that imposing dilator use could cause psychological distress (Johnson & Miles, 2010).
Surveillance, however, for new and recurrent cancer, has been strongly recommended as seen by the following below. Jin et al. (2011) found that the rate of squamous cell carcinoma of the anal region has steadily increased for both men and women in Australia since the mid-1980s. About 90% of these were linked to the HPV infection. Besides other risk factors women who have had anogenital (e.g. cervical cancer) disease have higher odds of developing anal cancer. In Young et al.’s (2009) review of 120 anal cancer patients study, 26% of women had related cervical, vulval or vaginal intraepithelial neoplasia or cervical cancer reflecting the documented link between anal cancer and HPV. In addition, women with anal cancer have a greater likelihood of previous cervical, vulvar and vaginal cancer thus follow-up of patients with gynaecological malignancies need close surveillance of neighbouring anatomical structures (Bjorge et al., 2002; Frisch et al., 1997 cited in Young et al., 2009). Invasive and pre-invasive neoplasms of the vulva could be HPV-induced and the carcinogenic effect could also be widely prevalent in the vulvar epithelium. Hence, regular follow-up of patients should be done to check for symptoms or signs of recurrence (National Cancer Institute, 2014).
It was highlighted above that women should be informed of the potential physical and sexual effects of PRT before and after their treatment. Adequate information is critical to prepare patients for what potentially could occur in regards to their sexual functioning in the short and long-term (Cleary et al., 2012). This section will focus on literature relating to an important and neglected facet of supportive care post PRT, both clinically and psychologically, namely, physical and sexual recovery/ rehabilitation information provision, and the benefit thereof for women.
Husson et al. (2011) argue that among the most critical factors of supportive care for cancer patients across the cancer trajectory, provision of information is the most important aspect. The author reasoned it on the basis that “(t)he goal of providing information is to prepare patients for their treatment, to increase adherence to therapy, to increase their abilities to cope with the illness and to promote recovery (van der Meulen et al., 2008)” (Husson et al., 2011, p. 761).
Information seeking itself often acts as a method of coping with the after-effects (Power et al., 2008). Cancer patients want information. For example, 80% of women with gynaecological cancer want detailed information about their disease, its treatment and self-care concerns (Bourgeois-Law & Lotocki, 1999). They also want to discuss various points related to intimacy and issues on sexuality and of fertility after cancer treatment (Katz, 2009; Friedman et al., 2011; Stead et al., 2003; Park et al., 2009; Bober et al., 2013; Schover, 2005), as do women with anorectal cancer (Wolf, 2006; Greimel et al., 2009; Phillip et al., 2013). Women want to play a role in decision making and in their recovery, and need adequate information about rehabilitation options to aid this (White, 2008; Bourgeois-Law & Lotocki, 1999).
Moreover, the imparting and tailoring of sufficient information regarding radiation side effects and dilator use has important implications for women’s physical and psychological recovery and wellbeing post PRT treatment. It has been found that sufficiently informed women exhibit better: coping skills with side effects; engagement with and adherence to post-radiation rehabilitation; a reduction in being scared to engage in intercourse and dilator use following treatment; and fewer intimate and sexual partner disruptions (Robinson et al., 1999; Juraskova et al., 2003; Klee et al., 2000). Some studies have demonstrated that when cancer patients were satisfied with the information they received greater health related quality of life, lower levels of depression and reduced levels of anxiety were shown (Husson et al., 2011). Conversely, patients who were not informed about possible side effects frequently felt disappointed, fearful, and in some instances, angry (Cassileth et al., 1980). Moreover, many women have erroneous beliefs (e.g. their vagina being radioactive post-treatment), and incorrect ideas and improbable expectations with regards to their treatment and recovery (Carter et al., 2013), thus information to correct misconceptions is vital.
However, despite the demonstrated need for information and support concerning post PRT sexual functioning, care in this area appears to be sub-optimal.
Many studies (Sekse et al., 2010; Rasmusson et al., 2008; Burns et al., 2007) have shown that women are unprepared to deal with and cope with sexual difficulties post gynaecological and colorectal cancer treatment (Wolf, 2006). Research shows that sexual information needs of gynaecological (Cleary et al., 2012; Faithfull & White, 2008), and more so anorectal cancer patients (Breukink and Donovan 2013; Cornish et al., 2007; O’Connor et al., 2010), are frequently unmet. In a systematic review, Husson et al. (2011) found that in the studies that they reviewed ranges of 6-93% of cancer patients reported unmet information provision needs. A NSW Cancer Council survey (2007) (Heading, 2008) found that a major failure of care reported by outpatients was about not receiving enough information about possible changes in sexual activity and in the relationship with spouse or partner. These survey findings are corroborated by other studies showing gynaecological and female anorectal patients receive little or no sexuality information (Incrocci & Jensen, 2013; Katz, 2005, Stead et al., 2006; Juraskova et al., 2003; Wolf, 2006). For example, research suggests that only 10-28% of gynaecological cancer patients are provided with information regarding sexual function from their treatment team prior to starting their treatment (Tsai et al., 2011; Stead et al., 2003; Lammerink et al., 2012). When they do receive information, patients are often dissatisfied, disappointed and discontented with the information made available (Steele & Fitch, 2008, Cleary & Hegarty, 2011). Similarly, in Nicolaije et al.’s (2012) study, most endometrial cancer patients said they were either not, or were a little informed about potential treatment side effects. Women in this study received the least information on topics related to post-treatment care including what to anticipate psychosocially and what to expect about their sexual life, where to go for help, for rehabilitation or psychological support, how to cope with matters after discharge and things to implement to aid their health. Importantly, they reported that the aftercare related issues, named above, was where women desired receiving more information. O’Connor et al. (2010) also found that whilst women with rectal cancer were satisfied with treatment- related information they received they were less satisfied with information about the long-term physical, psychological and social consequences of the disease.
As noted above, maximum possible information is desired by the majority of cancer patients (Jenkins et al., 2001, Rutten et al., 2005 cited in Nicolaije et al., 2012). However, the extent of information desired may be affected by factors such as: gender, age, education point, cultural upbringing, cancer type, coping manner, illness stage with regards to diagnosis, treatment and follow-up (O’Connor et al., 2010). For example, O’Connor et al.’s (2010) study on rectal patients’ informational needs showed that younger patients had significantly higher information needs. They were more concerned about whether the treatment would change the way they appeared or whether it would affect their sex life or relationships. Further to these challenges, older women often ask fewer questions than their younger counterparts and as a consequence might receive less information (Nicolaije et al., 2012). To compound this, studies have also shown that clinicians may be biased towards providing older patients with less information (Mayer et al., 2007 cited in Nicolaije et al., 2012). Therefore, these older patients rely more on information from their healthcare practitioners (Rutten et al., 2005).
On a similar note, less educated patients might show more certainty (Galloway et al., 1996 cited in Nicolaije et al., 2012), seek less information (Rutten et al., 2005) and be less likely to question information that is not meeting their needs (Nicolaije et al., 2012). Thus they may obtain less relevant information than higher educated patients (Nicolaije et al., 2012). Practitioners may also provide more information to their higher educated patients (Nicolaije et al., 2012).
Patients with less comorbidity were noted to be receiving more information and deriving greater satisfaction with the information. This suggests, patients with more problems have a greater need for more specific information and standard information have limitations in providing the required information (Nicolaije et al., 2012).
These are challenges that need to be considered in the advancement of personalised, patient-centred, accurately-timed information for those in need (Nicolaije et al., 2012). Additionally, the challenge with all the cancers in the current study is to know which, when and how much information to provide. For instance, colorectal patients require information that is not overwhelming at a time of immense uncertainty as to their treatment road (e.g. requiring a stoma, if so temporary or permanent stoma, radiotherapy, chemotherapy) (O’Connor et al., 2010). Similarly, with regards to the timing of sexual health information for gynaecological cancer patients the literature appears to deduce that there is no one time period to provide education on sexuality; rather information should be provided to address issues across the trajectory of diagnosis, treatment and recovery, with personalised needs guiding timing (Bourgeois- Law & Lotocki, 1999, Gamel et al., 2000, Rasmusson & Thome, 2008). Bruheim et al. (2013b) suggest that providing information about possible side effects prior to treatment will ease the difficulty for cancer patients in identifying or raising these issues/problems should they present at a later stage. However they may not be ready to consider these issues at that time. A still existing challenge within supportive care in radiotherapy practice is the determination of the optimal time, context and strategy to convey sensitive information (Faithfull & White, 2008). This has been an area identified for further research as has the need for, and relationship between, written materials and clinical discussions (Faithful & White, 2008; Katz, 2005; Wolf, 2006; Bodurka & Sun, 2006).
As can be seen, addressing information needs and providing information to cancer patients is a complex and multifaceted issue (King et al., 2010; Hill et al., 2011; McCallum et al., 2012). Along the cancer care and treatment trajectory, there are numerous junctures where obtaining care and information can be lacking and/or inadequate in meeting patients’ needs (Porter et al., 2005). Similarly treatment pathways are specialised for patients being treated for different cancers. Furthermore cancer patients express varying needs with some ignoring or avoiding information as a coping mechanism (Leydon et al., 2000) and some others searching to know as much about their treatment as they can (Cox et al., 2006). King et al. (2010) found that clinicians are encouraged to tailor the information to be provided according to the readiness of their patients to receive it and depending on the phase of their disease. However, it has been shown that clinicians, at diagnosis, often underestimate their patient’s desire for information (Frojd & Von Essen, 2006 cited in King et al., 2010). Furthermore, Cox et al., 2006 cited in King et al. (2010) argue that the patients who wish for resources are often disadvantaged by materials or discussion not being available to them at diagnosis.
Thus the above literature review section highlights the importance and complexities of meeting supportive care and informational needs for women and issues to consider in doing so. Breukink and Donovan (2013) argue that there should be a discussion and documentation of sexual dysfunction as a post cancer treatment complication. However, the prevention and treatment of sexual morbidity are often not ideal in clinical practice for a host of reasons (Levin et al., 2010). Potential barriers to clinician and patient sexual morbidity discussions and interventions will be discussed below.
Patient-centred communication may provide a means of overcoming issues such as dissatisfaction and unmet information needs. Onujiogu et al. (2011, p. 359) stressed the importance of this communication going as far as to say that “…it’s paramount that clinicians make an effort to communicate with gynaecologic cancer patients about the risks and modes of management of sexual dysfunction”. However, despite such assertions, discussions of post-treatment sexual adjustment issues commonly remains a taboo within the clinical setting (Hill et al., 2011; Lindau et al., 2007; Wolf, 2006; Falk and Dizon, 2013). Only 25% of doctors and 20% of nurses reported discussing sexual function with their patients in Stead et al.’s ovarian cancer study (2003). Hendren et al. (2005) found that only 9% of female and 39% of male rectal cancer patients recall discussion about the effects of the treatment on their sexual function preoperatively. Chorost et al. (2000) found a similar result with regards to no mention of possible sexual dysfunction in the informed consent process in a multimodality colorectal treatment study. Thus, it has been found that many clinicians prefer to concentrate on tackling the disease (Quinn et al., 2008; Hordern et al., 2007) and rarely raise sexual issues (Stead et al., 2003; Wang et al., 2013).
Moreover, discussions of sexual issues are often not raised despite the fact that healthcare professionals are well aware that these post-treatment issues exist (Wang et al., 2013). In Stead et al.’s (2003) ovarian cancer study, most healthcare professionals reported knowing that women would experience sexual problems.
Research has shown that doctors feel uncomfortable when discussing these aspects with patients. Doctors often assume that women have an adequate understanding of female reproductive anatomy. This assumption has implications on effective information provision. Further reported reasons for health care professionals not discussing sexual function with gynaecological cancer patients are: feeling that it is not their responsibility, lacking time, training, knowledge and experience, embarrassment discussing sexual issues and lack of resources to provide additional support if needed (Bodurka & Sun, 2006, Park et al., 2009; Hordern & Street, 2007; Bober et al., 2013). Onujiogu et al. (2011) and others (Bonner et al., 2012; White, 2008; Cullen et al., 2012) cite additional clinician barriers over and above those mentioned above, namely, opposite gender consultations, privacy constraints and practitioner discomfort discussing sexual issues. Additionally, some practitioners perceive sexual dysfunction to be a low priority (White, 2008).
Many women note that they found it difficult to raise the issue of their sexual changes with their doctors, not knowing if it was their doctor’s role, with some women feeling it was a taboo topic (Hill et al., 2011). Hill et al. (2011) established that out of 40-68% of gynaecological and breast cancer patients who believed that it would be beneficial to speak to a sexual health professional, only 7-10% really did so. Moreover, women report not being referred to clinicians to discuss treatment-related sexual health (Juraskova, 2009). Further, sexual adjustment may be a particularly difficult topic to discuss for older women, couples and those with cultural or religious constraints (Juraskova et al., 2003), even though these issues are of concern to them (Stead et al., 2003).
When discussions do occur, patients are frequently unhappy with the quality of discussions and amount of time spent by their medical team to discuss sexual health issues (Lindau at el., 2007; Duffy et al., 2009). This may explain why few patients recall the mention or discussion of sexual risks before treatment or treatment options for sexual function post treatment (Park et al., 2009). Lindau et al. (2007) found that conversations about cancer/treatment sexual effects were linked with significantly lower complex issues of sexual morbidity among patients who suffer vaginal and cervical cancer over a very long period.
A graphic example of the sorts of problems described above comes from an open letter from a woman who had endometrial cancer to her oncologist. This was published by the members of the Macmillan Late Effects Working Group in the Clinical Oncology Journal to motivate oncologists to discuss and debate this important issue (Vicary et al., 2007, p. 746-747).
I have been coming to your clinic for nearly 6 years now. Last week, I was seen by your registrar, who informed me that everything was fine. He said that it would be very unlikely for the cancer ever to return, and there was no longer any need for me to come back for follow-up.
I was sorry that I didn't see you, though. You were right about the cancer not coming back, that is a relief and I am grateful. But you know, we never had a proper conversation about it all, and what it has really been like. Perhaps you would be surprised to know how my life is.
Everybody says how well I look, and I guess I am cured now. So, as your registrar says, I can put it all behind me. Funny, it feels a bit like when I was first diagnosed with endometrial cancer. First the hysterectomy, then the radiotherapy with internal treatments. ‘Just get through the tiredness and diarrhoea, it's all to be expected, then everything will be normal again’. But, it's never been the same, never my ‘normal’ as I once was.
At first, I would ask how long I would be a bit loose, or having to rush to the loo. I didn't like to tell you I was having accidents, how embarrassing. You did ask me once if we were managing intercourse. I know I said yes, but I couldn't tell you how sore and uncomfortable it was. My husband gave up after a while, he could see he was just hurting me. I used the dilator just as the nurse instructed, but it has never been the same. I wanted to know if everyone was like me, but I never had the courage to ask.
There's another thing, my bladder. In the first year I kept getting cystitis. After this, I couldn't last for more than an hour. Everything now needs careful planning. I kept going back to my GP who gave me antibiotics, but they made little difference. A couple of years later, I had some bleeding from the back passage – that really alarmed me. You sent me to the specialist who carried out a colonoscopy. It was very uncomfortable, but at least he had an answer. He told me the radiotherapy had damaged the bowel and that surgery might be needed if the bleeding didn't stop. Fortunately, it did. I eventually understood that this was the problem with my bladder, too. It had just shrunk.
Perhaps you did tell me at the beginning, before the treatment. I don't think I took it in, and when I did learn about radiotherapy damage, it was hard to find answers. There is so much I still don't know. Will it get worse? What will happen to me?
I think I was quite angry with you at this time, but I eventually realised that my problems weren't caused by bad treatment, they just happen to some people. I just didn't understand, but that made it harder to keep bringing the subject up when you saw me in clinic. ‘How was I?’ you asked. On a good day uncomfortable, using pads, and planning carefully every time I went out of the house. On a bad day, I'd rather not eat than embarrass myself in front of family and friends and I sleep in a separate room now.
My GP says he has not seen anyone like me before. For a long time, he said he didn't know what was going on. He admits he has little experience in looking after people with different types of cancer and especially in dealing with the after effects. I often have thought that it would have made a difference to talk to other people who had similar experiences to me. That's been the worst thing – at times I have felt that I was making a fuss. Eventually, finding out that all this was late effects on my bowel and bladder almost came as a relief. At least there was an explanation.
I don't mean to grumble. I just want specialists like yourself to realise that it is not just the big problems like bleeding, it is all the little things put together that wear us down. We don't expect you to have the answers – by now I realise there aren't easy ones – but it helps to be able to talk about them without embarrassment. If you can put in our notes that there is no sign of cancer, isn't it important to write down what else we are living with, if only so that other doctors and nurses will understand too and we can judge if things are changing or getting worse.
With hindsight, I think I needed to be more prepared for this at the very beginning – that life would be different rather than expecting everything to be the same. More information. This would have helped, as well as getting information when problems begin. When they do happen, it is so important that our symptoms are recognised and acknowledged as part of the treatment effects. At least that gives them a label and an explanation. Even so, it is hard to qualify for benefits, and GPs and other people simply don't understand what I am talking about.
So, from now on, no more visits – it is all behind me. Yet you and your team are the only people who really understand about me and the problems I live with. Frankly, I'm scared of losing contact. I feel strongly that I will continue to need the support of your clinic and team. I don't need to be seen regularly, but I do need to see you if something else happens. I'd like to think that you will still be there to advise and refer me on, if I need help from others.
Finally, I would like to challenge you to think what you can do for other people like me, perhaps the ones just starting treatment now. For all of us, patients, doctors and nurses alike, our hearts are set on improving the results and more people being cured. It is a tribute to your hard work that more and more of us survive our cancers. That means more people like me who have to adapt to a different ‘normal’ and a life that has changed. You know, my husband had a heart attack 3 months ago. What struck me was how the Heart Specialist Team talked to us together and explained that this would now affect all aspects of our lives that things would be different, including sex, and they gave us some advice on what to expect and how we were going to cope. It made me wonder if something similar would really help people going through treatment for cancer.
I guess I'm an expert too, now – I've lived with problems of surgery and radiotherapy for 6 years now. I understand that I don't need regular cancer checks, but I do need to know that I can contact you somehow – perhaps through your nurse specialist. I would really appreciate that.
I also know from a friend who was treated for breast cancer that her oncologist sees patients affected by late effects through a dedicated clinic and everyone is seen once a year. I was wondering if something like this might be set up for those for other types of cancer?
I would like to thank you and your team for the help you have given me over the past few years, which is deeply appreciated, and in anticipation of your help in the future should I need it.
In light of the problems in doctor-patient communication about late pelvic radiation effects, particularly sexuality, when opportunities do present for discussions regarding post-treatment sexual function, medical personnel evidently need guidance and resources in order to intervene optimally (Carter et al., 2013). Many authors argue that clinicians require additional training in order to discuss and deal with sexual dysfunction with their patients undergoing cancer treatments which can cause sexual dysfunction (Park et al., 2009; Bober et al., 2013). Despite this, clinicians receive limited communication training, thereby impeding their developing proficiency in key communication areas. Online training may improve this in the future. For instance, an online program with learning modules has been developed in Australia to impart required knowledge and skills among health professionals to render support for women and their partners who experience psychosexual concerns after gynaecological cancer post-treatment (Cancer Australia, 2014). Encouragingly, Jensen et al. (2003) note that the demand for discussion between healthcare professionals and patients on all dimensions of adverse effects post treatment is on the rise reflecting a greater acknowledgement of sexual difficulties post cancer and it’s treatment.
Thus to conclude this section, clinician and patient barriers to communication about sexual issues post PRT abound and need to be addressed. One way of addressing issues in doctor-patient communication is to support or supplement this interaction with external resources.
The following and final sections of the literature review will examine psychoeducational interventions/resources for improving communication and facilitating post PRT psychosexual recovery.
It has been found that psychoeducational interventions can reduce the fear about sexual activity, increase knowledge of related issues and increase adherence with using vaginal dilators and improve sexual desire, arousal, orgasm and satisfaction (Robinson et al., 1999; Jeffries et al., 2006; Brotto et al., 2008). However, there is a significant lack of development and implementation of intervention studies aimed at evaluating and treating sexual dysfunction post treatment in the gynaecological and anorectal cancer setting (McCallum et al., 2012; Philip et al., 2013; Wolf, 2006; Park et al., 2009; Bober et al., 2012). For instance, Gervaz et al., (2008) call for the development of effective interventions for the unmet sexual needs of rectal and anal (Philip et al., 2013) cancer patients. Flynn et al. (2009) cite a Cochrane Review (2009) calling for methodologically sound interventions to address sexual concerns for this important patient cohort. Indeed, health professionals report having inadequate knowledge and access to materials that would assist them in communicating about post-treatment psychosexual changes (Bourgeois-Law & Lotocki, 1999; Cull et al., 1993; Corney et al., 1993). More specifically, there is a lack of resources for patients and healthcare professionals working with women undergoing pelvic radiation (Faithfull & White, 2008; Bonner et al., 2012; O’Connor et al., 2014).
In providing information to cancer patients, it has been suggested that verbal informing/teaching should go together with additional educational methods to guarantee positive outcomes (Treacy & Mayer, 2000). Information provision involves new and oftentimes frightening concepts. Thus patients can have difficulty comprehending and retaining verbal information, and this can be exacerbated by shock, disbelief and information overload. Patients also sometimes perceive information as irrelevant at particular times during their cancer diagnosis and treatment continuum though needing/desiring the information at a later stage (Cleary et al., 2012). Additionally, many women report that they prefer not to discuss sexual matters though they would still like to access information.
Printed education materials can be referred back to as and when is needed, serving as a lasting reminder of verbal material (Mills & Sullivan, 1999). There exists a tremendous benefit in written information if patients want to retain them as they can serve as enduring documents providing reminders from memory and treating mistaken beliefs. Such information also helps to enlighten families and community clinicians. Thus everyone concerned is aware of the facts and advice that patients have been given (Mills & Sullivan, 1999, p. 635). Thus printed materials form an important adjunct to doctor-patient communication in this area.
Furthermore, patients appear to have a strong desire for and benefit from printed materials. Whilst Bourgeois-Law and Lotocki (1999) found that 60.3% (n=35) of gynaecological cancer patients would prefer a one-on-one consultation with a healthcare professional to meet their information needs regarding sexuality, this was followed by a pamphlet as a preference (44.8%, n=26). Endometrial cancer patients were found to be more satisfied and reported receiving more information upon provision of written information than those who were not in Nicolaije et al.’s (2012) study. These authors argue that this is consistent with other studies that found that patients who received written information had better recall, knowledge and satisfaction with information (Johnson et al., 2003, Smith et al., 2011 cited in Nicolaije et al., 2012). Communication/decision aid/psychoeducational resources have also been shown to increase knowledge, reduce conflicts of decisions, and increase participation in making decisions without undue anxiety (O’Connor et al, 1999).
Moreover written material can encourage and promote further discussion and questioning (Dennison, 1997 cited in Mills & Sullivan, 1999). Griffiths and Leek (1994, cited in Mills & Sullivan, 1999) examined various modes of imparting information and found that patients and nurses deemed written resources more effective than alternate methods. Taken together, these findings emphasise a need to adjoin verbal information with written information (Cleary et al., 2012).
To be trusted and incorporated into patient care by clinicians, printed materials need to be evidence-based and of a high quality (Cleary et al., 2012). Printed materials should also address the kind of information women need with regards to sexual functioning, tailored to their current knowledge rather than clinician assumed patient needs (Aggarwal et al., 2013). Thus patient-reported outcomes and viewpoints are a recognised element in the literature on intervention/education material development and design (Carter et al., 2013; Campbell et al., 2007). This is to ensure needs-based, relevant and targeted resources (Cleary et al., 2012).
The current study aimed to fill the identified gap in information for women following PRT, by developing, piloting and trialing a psychoeducational-psychosexual recovery booklet for women post PRT, based on evidence, and consumer input.
To conclude this background chapter the study aims, hypotheses and an explication of the study undertakings will be provided below.
The first phase of the study focused on the development of a psychoeducational information booklet to improve information delivery about radiation-induced side effects potentially affecting post-treatment recovery, and especially sexual functioning, for women with gynaecological and anorectal cancer. The booklet aimed to provide information on sexual/psychosexual side effects of PRT and rehabilitation options and evidence-based self-care strategies, such as the use of vaginal dilators, to prevent/minimise treatment-related vaginal changes.
The second phase of the study piloted the information booklet. The aims of the pilot were to explore women’s views about sexuality and rehabilitation informational needs following PRT; investigate the feasibility and acceptability of providing women undergoing PRT with an information booklet (developed in Phase I of the study) about radiation-induced side effects potentially affecting recovery, and especially sexual functioning/vaginal changes, and assess the acceptability of a measurement protocol that will be used in a later randomised controlled trial (RCT) of the booklet (Phase III).
The third phase was the conduct of a randomised controlled trial (RCT) of the information booklet. The RCT aimed: to evaluate the effectiveness of an Information Booklet in improving knowledge, use of dilators and sexual outcomes and reducing anxiety depression and stress, through information delivery about: the clinical importance of the use of dilators to maintain vaginal patency and minimise stenosis for adequate pelvic examinations to detect new or recurrence of cancer, radiation-induced side effects potentially effecting post-treatment physical and sexual functioning, rehabilitation options and self-care strategies, such as the use of vaginal dilators, to prevent/minimise vaginal changes.
In the RCT it was anticipated that compared to the control group (standard care and general “Understanding Radiotherapy” Cancer Council booklet), patients in the intervention group (who receive standard care plus the study Information Booklet) would report:
1. Greater and more consistent use of vaginal dilators, lubricants and Pelvic Floor Muscle exercises;
2. Greater knowledge regarding post-treatment physical and sexual side-effects and rehabilitation options;
3. Lower levels of anxiety, depression and PRT-related posttraumatic stress symptoms; and
4. Greater improvements in sexual functioning and sexual satisfaction (at 3 and 6 months post-treatment).
This study addresses a previously neglected but important component of post-treatment care for women receiving pelvic radiotherapy by introducing a novel, simple and much needed resource. If shown to be effective for women in a gynaecological and anorectal cancer setting, the proposed resource is potentially transferable to a range of treatment settings for women requiring pelvic-radiotherapy, such as bladder cancer.
The information booklet development chapter will follow here. Following this the pilot method and results and the trial (RCT) method and results (at Baseline, 3 and 6 months) and the overall discussion, clinical implications and study limitations will be presented.
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