by Deborah L. McLeod, Lauren M. Walker, Richard J. Wassersug,
publicité
The sexual and other supportive care needs of Canadian prostate cancer patients and their partners: Defining the problem and developing interventions by Deborah L. McLeod, Lauren M. Walker, Richard J. Wassersug, Andrew Matthew, and John W. Robinson Abstract Prostate cancer (PCa) treatments result in a wide range of short- and long-term survivorship issues not only for men, but also their partners. The effects of treatment vary from urinary incontinence and sexual dysfunction, to psychological, relational and social challenges. Androgen-deprivation therapy contributes as well to serious health risks (e.g., cardiovascular disease and osteoporosis), which must be effectively managed. Although there are a myriad of survivorship issues to manage, there are few survivorship programs in Canada to help patients and partners address the outcomes of PCa diagnosis and treatment. However, this is starting to change. Several sites across Canada are participating in developing a range of programs to address the supportive care needs of men with PCa and their partners. In this article, we discuss the issues and the programs that are now emerging to address them. Prostate cancer (PCa) patients face a myriad of issues associated with treatment that significantly impact quality of life. The primary localized and potentially curative PCa treatments are radical prostatectomy and radiation treatment (in the form of brachytherapy or external beam radiation). Systemic therapies such as androgen deprivation therapy (ADT) are also common. Although patients and their partners experience significant physical and psychosocial impacts from such treatments, support to address these issues is limited and inconsistently in Canadian cancer centres. A number of Canadian cancer centres have been working diligently over the past six years to improve the supportive care offered to PCa patients and their partners. Two examples of these programs will be discussed, one focusing on sexual dysfunction arising from localized treatment for PCa and the second, addressing adaptation to androgen deprivation therapy. Survivorship issues for men and partners Email: [email protected]; Telephone: 902-473-2964; Fax: 902-473-2965 Despite improvements in treatments for localized PCa, an overall best estimate of the prevalence of long-term erectile difficulties following treatment is 40% to 80% (Cooperberg, Koppie, Lubeck, Ye, Grossfeld, Mehta, & Carroll, 2003; Lilleby, Fosså, Wæhre, & Olsen, 1999; Tanner, Galbraith, & Hays, 2011; van der Wielen, Mulhall, & Incrocci, 2007). The majority of these men will experience significant distress in response to erectile dysfunction (ED) (Cooperberg et al., 2003; Matthew, Goldman, Trachtenberg, Robinson, Horsburgh, Currie, & Ritvo, 2005; Mirone, Imbimbo, Palmieri, Longo, & Fusco, 2003). Other difficulties with sexual function include loss of sexual desire, difficulty achieving orgasm, reduced quality of orgasm, climacturia and dysorgasmia. The burden of sexual dysfunction is responsible for the single greatest impact on patient and partner health-related quality of life; even more so than concern for cancer recurrence (Crowe & Costello, 2003; Heathcote, Mactaggart, Boston, James, Thompson, & Nicol, 1998). Research examining the nature of the distress in these men (and their partners) reveals that the burden of sexual dysfunction reaches far beyond the ability to have an erection, and has complex psychosocial implications including intimacy loss (Helgason, Adolfsson, Dickman, Arver, Fredrikson, & Steineck, 1997), low selfesteem, guilt, depression, anxiety, and anger (Pedersen, Carlsson, Rahmquist, & Varenhorst, 1993). Psychological adjustment and mood are significantly associated with both sexual concerns and with dyadic adjustment (Wooten, Burney, Frydenberg, Foroudi, 2007). Predictors of psychological distress and low mood include the use of avoidant coping (Perczek, Burke, Carver, Krongard, & Terris, 2002), low self efficacy (Northouse et al., 2007), poor relationship quality (Perez, Skinner, & Meyerowitz, 2002), and poor spousal communication (Manne, Badr, Zaider, Nelson, & Kissane, 2010; Manne, Kissane, Nelson, Mulhall, Winkel, Zaider, 2011). These findings support the assertion that survivorship programs need to include the partners of patients. 272 CONJ • RCSIO Fall/Automne 2014 doi:10.5737/1181912x244272278 About the authors Deborah L. McLeod, PhD, RN, Dalhousie University, School of Nursing and Capital Health/QEII Cancer Care Program, Halifax, Nova Scotia, Canada Lauren M. Walker, PhD, Department of Oncology, Faculty of Medicine, University of Calgary and Department of Psychosocial Resources, Tom Baker Cancer Centre, Calgary, Alberta Richard J. Wassersug, PhD, Department of Urologic Sciences, University of British Columbia, Vancouver, British Columbia, Canada, & Australian Research Centre in Sex, Health and Society, LaTrobe University, Melbourne, Australia. Andrew Matthew, PhD, CPsych, Princess Margaret Hospital, Dept. of Surgical Oncology, Toronto, Ontario, Canada John W. Robinson, PhD, RPsych, Department of Oncology, Faculty of Medicine, University of Calgary and Department of Psychosocial Resources, Tom Baker Cancer Centre, Calgary, Alberta. Department of Psychology, University of Calgary, Calgary, Alberta, Canada. Address for correspondance: Deborah L. McLeod, QEII Health Science Centre, Victoria 11-006, 1276 South Park St., Halifax, Nova Scotia, Canada, B3H 2Y9 The way that patients experience PCa and treatment, and their impact on a man’s sense of masculinity, has been described in a number of studies (Charmaz, 1995; Courtenay, 2000; Oliffe, 2002). Overall, men have a tendency to respond to illness with stoicism and silence. In the face of sexual disability many men view ED as their “problem to fix” (Oliffe, & Thorne, 2007). When men are faced with unsolvable ED, a common coping strategy is to withdraw and to become less communicative with their partner. Such a strategy has been found to be detrimental to couples in the long run (Roesch et al., 2005), limiting the potential for dyadic coping and problem solving, and increasing the distress of the patient’s partner. Several reviews suggest that partners report as much, or in some cases more, distress than patients (Cliff & MacDonagh, 2000; Couper, Bloch, Love, Macvean, Duchesne, & Kissane, 2006a; Hagedoorn, Buunk, Kuijer, Wobbes, & Sanderman, 2000) and breakdowns in intimacy are a commonly identified problem (Boehmer, & Clark, 2001; Hawes et al., 2006; Navon & Morag, 2003; Schover, 2001). Significant predictors of spousal distress include: 1) greater patient distress, 2) less support from their partner, 3) lower marital quality, 4) low levels of positive reappraisal coping, and 5) searching for, but not finding, meaning in the illness experience (Eton, 2005). Other researchers have found that PCa patients reporting stronger dyadic bonds experience less distress (Fergus, 2011). The role of the partner has also been found to be significant in ameliorating disruptions to the identity and self-esteem of PCa patients (Skerrett, 2010; Fergus, 2011). Involvement of the partner in the survivorship programs is, thus, likely not only to help ameliorate partner suffering, but also to promote better coping by the patient (e.g., Kukula, Jackowich & Wassersug, 2014). Some studies (Garos, Kluck, & Aronoff, 2007; Manne et al., 2010; 2011) have demonstrated difficulties in communication among PCa couples. There are a number of stressful topics that many couples tend to avoid discussing such as the threat of death, body shame and embarrassment, and sexual dysfunction. Avoidance of important, but difficult, issues seems to contribute to an overall decrease in communication about other topics such as intimacy. The tendency for couples to engage in protective buffering, that is, not bringing a topic up for fear that it will cause one’s partner distress, has been identified as one contributor to decreased communication (Coyne, Ellard, & Smith, 1990). Reports of interventions that focused on enhancing communication for couples dealing with localized PCa suggest that communication is key to predicting adjustment and distress (Manne et al., 2010; 2011). Given the lack of standardized survivorship programs in Canada, particularly programs that specifically define PCa as a couple’s illness, it is not surprising that both men and their partners identify needing more psychosocial support than is typically provided (Banthia, Malcarne, Varni, Ko, Sadler, & Greenbergs, 2003; Couper, Bloch, Love, Macvean, Duchesne, & Kissane, 2006b; Harden et al., 2002; Neese, Schover, Klein, Zippe, & Kupelian, 2003; Pitceathly, & Maguire, 2003; Resendes & McCorkle, 2006; Schover, 2001; Soloway, Soloway, Kim, & Kava, 2005; Steginga, Occhipinti, Dunn, Gardiner, Heathcote, & Yaxley, 2001). Emerging Canadian programs to address survivorship issues The Sexual Health and Rehabilitation Eclinic Given the extensive impact of sexual dysfunction on patient/ partner quality of life (QoL) (Manne, 1999; Meyer, Gillatt, Lockyer, & Macdonagh, 2003; Steginga et al., 2001) there exists a need for rehabilitative intervention. The proposed Sexual Health and Rehabilitation e-Clinic (SHARe-C) is a Pan-Canadian, webbased sexual health and rehabilitation intervention facilitated by healthcare professionals (HCPs) with expertise in sexual doi:10.5737/1181912x244272278 health and PCa. Funded by Prostate Cancer Canada (PCC), the SHARe-C intervention is the product of a collaboration of three major centres: the Princess Margaret Cancer Centre Prostate Cancer Rehabilitation Clinic in Toronto, ON, the Sexual Health Program at the Tom Baker Cancer Centre and the Prostate Cancer Centre in Calgary, AB, and the Dalhousie/Capital Health Online Sexual Rehabilitation in Prostate Cancer program in Halifax, NS. The SHARe-C goals are to improve sexual function and to support the maintenance of intimacy following PCa treatment. These goals are addressed through two complementary components: 1) a bio-medical component, focused on the longterm return of erectile functioning firm enough for penetration, and 2) a psychosocial component, to maintain or restore couples’ intimacy. Briefly, the biomedical approach to improving ED after PCa treatment, referred to here as “Erectile Rehabilitation (ER)”, involves the use of pro-erectile agents/devices to promote the oxygenation of penile tissue in order to reduce the likelihood of structural damage (Fode, Ohl, Ralph, & Sonksen, 2013). In this regard, patients will be supported in following an erectile rehabilitation algorithm developed by a multi-disciplinary Canadian expert consensus panel. The algorithm will be designed to accommodate differences in patient response to pro-erectile medication and in patient/partner acceptance/tolerance of pro-erectile treatments. The primary goal of the psychosocial component is to help couples maintain intimacy and engage in satisfying sexual activity, with or without penetrative sex. The SHARe-C uses multiple modalities in order to support successful intervention including: online facilitated group counselling sessions, an electronic workbook of the program, and self-management approaches supported by mobile-device applications. Facilitated, web-based counselling through chatrooms, supported by Cancer Chat Canada (CCC), will be provided to patients and their partners both prior to definite PCa treatment of curative intent and at five time points over two years following treatment. Importantly, the SHARe-C counselling times are chosen to reflect critical points of psychosocial and sexual healthcare needs after treatment for PCa. The online counselling will take place in a password-protected chat-room and will involve either eight couples, or eight single patients. Participants will be grouped by treatment modality (e.g., surgery versus radiation) and post-treatment follow-up time-point. This will ensure that couples will be on a similar trajectory. Early counselling sessions focus on education, normalization of sexual health changes, and rehabilitation in an effort to mitigate maladaptive expectations. Topics include: effects of surgery and radiotherapy on sexual health, sexual health rehabilitation programming, encouraging early use of pro-erectile medication, and realistic expectations. Both single men and couples will receive intimacy counselling, aimed to highlight how communication and maintaining non-sexual intimacy are a foundation for overcoming sexual dysfunction, as well as strategies to achieve sexually satisfying experiences with or without penetrative sex. Significant efforts will be made during sessions to determine specific patient concerns (e.g., performance anxiety, lack of spontaneity and naturalness). Later sessions will focus on personalizing the pro-erectile treatment regimen and guidance in non-penetrative sexual activities. The final sessions will focus on long-term planning to maintain intimacy, and on acceptance and adaptation to the patient/couple’s new sex lives. An interactive, online workbook will be available to participants. The workbook will be organized such that chapters will complement topics discussed by the facilitator during counselling sessions. Men, both those with and without partners, will be asked to read specific chapters prior to their online counselling session, and to complete goal-setting and journalling sections. CONJ • RCSIO Fall/Automne 2014 273 Of course, SHARe-C will only be as effective as our facilitators are skilled. Having enthusiastic, competent, and confident facilitators/counsellors is essential. Accordingly, we are developing a training program called the Sexual Health and Rehabilitation eTraining Program (SHARe-T). Also funded by PCC, its objective is to establish a specialized, PCa-specific, sexual health training program for HCPs across Canada in an effort to increase access to sexual health support for men and their partners following treatment for PCa. The training program will equip HCPs with the skills and knowledge necessary to deliver sexual health support to that community. The SHARe-T will be offered as an online, interprofessional training program through CAPO’s (Canadian Association of Psychosocial Oncology) Interprofessional Psychosocial Oncology Distance Education (IPODE; www.ipode.ca) project (McLeod, Curran, Dumont, White, & Charles, 2013; McLeod, Curran, & White, 2011). Beyond increasing the number of skilled HCPs in Canada, SHARe-T also aims to provide education, support, and guidance in the development of PCa sexual health programs through site champions. Once trained, graduates can facilitate the SHARe-C intervention, using the technology and materials at their own institution. SHARe-C and SHARe-T are complementary programs designed to facilitate HCP training and improve access to quality care, regardless of proximity to cancer centres and irrespective of geographical region. Interested HCPs are invited to contact the IPODE project in January 2015 to obtain more information about the SHARe-T training program. The Androgen Deprivation Therapy (ADT) Educational Program ADT in advanced PCa patients can increase survival by as much as seven years (Fleshner, Keane, Lawton, Mulders, Payne, Taneja, & Morris, 2007). However, patients must cope with the side effects of androgen suppression for the duration of treatment. PCa patients on ADT need far more supportive care than is currently provided, given the wide range of ADT-related effects (Armes et al., 2009; Elliott, Latini, Walker, Wassersug, & Robinson, 2010; Alibhai, Gogov, & Allibhai, 2006; Casey, Corcoran, Goldenberg, 2012; Freedland, Eastham, & Shore, 2009; Saylor & Smith, 2009). This is hardly surprising given that ADT’s side effects include: (i) body feminization (Ervik & Asplund, 2012; Zaider, Manne, Nelson, Mulhall, & Kissane, 2012), (ii) diminished sexual interest and function that often strains intimate relationships, (iii) cognitive and affective changes (McGinty et al., 2014; Lee, Jim, Fishman, Zachariah, Heysek, Biagioli, & Jacobsen, 2014; Wu, Diefenbach, Gordon, Cantor, & Cherrier 2013), and (iv) sleep disturbance, fatigue and depression (Hanisch, Gooneratne, Soin, Gehrman, Vaughn, Coyne, 2011). ADT is associated with weight gain and increases the risk of osteoporosis (Ross & Small, 2002), cardiovascular disease, obesity, and insulin resistance (see review, Walker, Tran, & Robinson, 2013). Furthermore, the partners of ADT patients experience significant distress from loss of intimacy, and reduced overall QoL (Elliott et al., 2010). Prescribing physicians attempt to reduce the toxicity of ADT through the use of intermittent ADT. However, even with intermittent or short-term use, the adverse impact on psychosocial well-being and QoL remain substantial (Allan, Collins, Frydenberg, McLachlan, & Matthiesson, 2014; Sharpley, Bitsika, Wootten, & Christie, 2014). Maintaining good QoL on ADT is possible with proper management. For example, pharmacological treatments can help reduce hot flashes and osteoporosis, while lifestyle interventions, such as exercise programs, can reduce fatigue, depression, and the risk of metabolic syndrome (Wolin, Colditz, & Proctor, 2011). To be effective though, management must start early, which means that patients need to know about the side effects and their management in a timely fashion. 274 CONJ • RCSIO Fall/Automne 2014 Patients often report being inadequately prepared for ADT treatment (Alibhai et al., 2010). Simply stated, the incongruence between what HCPs know about managing ADT side effects and what actually reaches patients (and partners) suggests a failure in knowledge translation; i.e., there is a critical practice gap that unnecessarily reduces both patient and partner QoL (Hovey et al., 2012). Another study (Walker, Tran, Wassersug, Thomas, & Robinson, 2013) confirmed that both patients starting on ADT and their partners are poorly informed about the side effects of ADT. More than 50% in that study were unaware of side effects such sarcopenia, osteoporosis, increased fracture risk, weight gain, genital shrinkage, and gynecomastia. This lack of awareness of ADT effects may partially explain why ADT results in significant decreases in QoL in that patients, who are uninformed about the adverse effects of ADT, are unable to engage proactively in behaviours to prevent or reduce these effects. In an effort to explore why patients report such poor knowledge about ADT, a survey of 75 oncologists and urologists in Canada was conducted to determine what side effects they believed patients should know about, and what side effect management strategies they endorsed (Tran, Walker, Wassersug, Matthew, McLeod, & Robinson, 2014). There was a high level of agreement among specialists about the importance of informing patients about some of the side effects of ADT, however, they disagreed about many others. Examples where there was much disagreement included about the importance of informing patients about delayed orgasm, genital shrinkage, and type II diabetic risk. This is concerning because research demonstrates that men are highly distressed when they find their genitals shrinking, are no longer able to reach orgasm, and learn they are at increased risk of developing diabetes. Patients may feel betrayed by their medical team when they discover these issues on their own and have no management strategies to address them. The study by Tran et al. (2014) also indicated that many physicians do not endorse evidence-based management strategies for ADT side effects. A comparable survey of Canadian primary care physicians reported similar findings (Soeyonggo, Locke, Del Giudice, Alibhai, Fleshner, & Warde, 2014). The general practitioners did not feel qualified to manage the adverse effects of ADT and felt that the responsibility should rest with their specialist colleagues. Unfortunately, many supposedly reliable websites providing information about ADT directly accessible by PCa patients also contain inaccurate and outdated information (Ogah & Wassersug, 2013). Thus, access to standardized evidence-based information on ADT adverse effects and their management is simply not reaching PCa patients and their partners. The rationale for involving partners in survivorship care programs for PCa patients is strong, and is particularly supported in the context of ADT. For example, Walker and Robinson (2011; 2012) report that many couples were told by their HCP that sex would be impossible while on ADT. Believing this, some couples elected to cease striving to engage in sexual activity. Some of these couples adapted well to this change, while others drifted apart. Alternatively, other couples discovered ways of having satisfying sex despite the man’s androgen deprivation and reduced libido. Our observation that some men maintain satisfying sexual intimacy while on ADT is consistent with reports from other research groups (Ng, Corica, Turner, Lim, & Spry, 2014) and suggests that couples should not be uniformly told that ADT will end their sex lives. The question of whether more couples would continue to enjoy sex, if given suggestions on how to remain sexually active, is the focus of ongoing studies (e.g., Wibowo, Wassersug, Warkentin, Walker, Robinson, Brotto, & Johnson, 2012) and is also supported in the guest patient editorial by Richard Wassersug included in this journal issue on page 306. Most cancer centres have well-established programs to educate patients about managing the side effects of chemotherapy and doi:10.5737/1181912x244272278 radiation therapy. ADT has arguably as many substantial, life-altering side effects as chemotherapy and radiotherapy, yet comparable programs for educating patients about how to deal with ADT side effects are only now being developed. Anecdotally, HCPs tell us they try to compensate for the lack of formal educational programs by spending considerable time talking to their patients about ADT, its side effects, and how to manage them. However, they indicate frustration because patients continue to report poor knowledge about ADT. One reason for this is that patients are often overwhelmed by the volume of information provided them in those consultations. As such, little information appears to be retained. Against this background, we set out to develop a comprehensive patient education program for all PCa patients starting on ADT. Implementation of our ADT Educational Program begins with educating HCPs involved in the care of men on ADT. It includes an introduction to motivational interviewing (MI), which has demonstrated effectiveness (Lundahl & Burke, 2009; Lundahl, Moleni, Burke, Butters, Tollefson, Butler, & Rollnick, 2013; Miller and Rollnick, 2013; Rubak, Sandbæk, Lauritzen, & Christensen, 2005) in helping people to make changes in behaviour. MI is still new to many HCPs, although it is an empirically supported semi-directive, patient-centred counselling style for eliciting behaviour change (Lundahl and Burke, 2009; Lundahl et al., 2013; Miller and Rollnick, 2013; Rubak et al., 2005). One of the things that HCPs learn in our in-service sessions on MI is how to use a carefully designed script when they first prescribe ADT to men. Our script was developed with the input from urologists, radiation oncologists, nurses and psychologists, and is specially worded to increase the likelihood that men and their partners will attend the ADT educational classes (See Figure 1 for this script). The script is included here, as a general resource; HCPs are encouraged to adapt and use the script when introducing ADT to their patients. Figure 1: Suggested ADT script Androgen deprivation therapy is an effective way to manage prostate cancer and to improve the effectiveness of external beam radiation therapy. ADT has been strongly recommended as an important part of the management of your prostate cancer. However, you should be aware it may cause many changes in your body. You may experience fatigue, weight gain, loss of muscle mass, and increased risk of osteoporosis, diabetes and cardiovascular disease. As I’m sure you are aware, many of these changes can pose significant health risks. When prescribing ADT we weigh the risks and benefits of treatment. If you choose to go on this treatment, it is essential that you manage these increased risks through important lifestyle changes, such as engaging regularly in exercise and practising healthy eating habits, much like the changes people make to live more healthily when diagnosed with diabetes. If you decide to follow through with the recommendation to start androgen deprivation therapy, I will be asking you to make a commitment to effectively manage your health while on this treatment. There are other changes you may experience that can also affect your quality of life, like hot flashes, breast growth, genital shrinkage, loss of libido, sexual dysfunction, loss of body hair, infertility and changes in your mood. It is important that you (and your partner) attend the ADT Educational Program where you will learn how to manage these changes. doi:10.5737/1181912x244272278 MI is also paired with self-management strategies in our ADT educational classes to help patients explore and resolve ambivalence, and work toward making lifestyle changes to avoid the more debilitating side effects of ADT. This is done in addition to enhancing individual resources (e.g., wisdom, strategies, social support) for making changes. Such an approach contrasts the more traditional model of patient education that often uses the extrinsic force of the HCP (persuading, compelling, advising and demanding) to provoke change. External force often, paradoxically, increases individuals’ resistance to making a change (Miller & Rollnick, 2013). The patient educational component of this program is centred on the recently published book Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and their Loved Ones, referred to below as the ADT book (see LIFEonADT.com). The ADT book is designed to help men and their partners recognize, adapt to, and overcome the side effects of ADT. The ADT book, as its subtitle implies, is for both men and partners. It is not just a text outlining side effect management strategies; rather it uses MI-informed language and exercises to help patients make lifestyle changes to avoid or reduce many of the debilitating side effects of ADT. Strategies are included for managing the physiological effects of ADT, such as increased medical risks associated with weight gain and metabolic changes, but specific attention is also paid to intimate relationships. Thus, this program prioritized the involvement of partners. There we include suggestions to help men and partners remain close, both emotionally and physically, even when ADT suppresses the man’s libido and erectile function. The ADT book offers specific suggestions for how to remain sexually active while on ADT, despite changes in the man’s sexual function and level of sexual desire. At the same time, the authors recognize that not all men on ADT are partnered or sexually active. Chapters are free-standing so that readers can focus on issues that may specifically concern them (e.g., diet, exercise, physical side effects, psychological impact, sexuality). The education program built around the ADT book, as it is currently constructed, has an introductory and a follow-up group session; each approximately 1.5 hours in duration. The first session introduces the major side effects of ADT, including the ones that are most bothersome to patients (e.g., hot flashes, weight gain, fatigue, and loss of sexual function), as well as those that are medically of most concern (e.g., metabolic syndrome, cardiovascular disease, osteoporosis). Attendees at that session are introduced to self-management strategies and during the session are asked to complete an “action plan” in which they identify a specific goal for behavioral change. This exercise is designed to encourage patients to make specific lifestyle changes, most notably to increase their level of physical activity, in order to avoid or reduce many of the adverse effects of ADT. The benefits of physical exercise for ADT patients have been well documented in many studies (Cormie, Newton, Taaffe, Spry, & Galvão, 2013; Culos-Reed et al., 2010; Wall, Galvão, Fatehee, Taaffe, Spry, Joseph, & Newton 2014), but it is particularly hard to get patients to exercise once treatment side effects such as fatigue, depression, and osteopenic obesity have set in. The educational program recognizes that for many Canadians, major adjustments in their lifestyle are necessary to maintain a good quality of life on ADT. The second session of the educational program comes two to three months later, at a time when most of the side effects of ADT, which patients and those close to them might observe, have emerged. Patients (and partners) are invited to share their experiences about what they have found most effective in managing ADT side effects. The follow-on session is also meant to be a motivational “booster session” to check in on the goal setting that was CONJ • RCSIO Fall/Automne 2014 275 done in the first session, in order to help patients adhere to a lifestyle that can mitigate ADT adverse effects. Currently the ADT educational program is being offered in Calgary, Vancouver and Victoria. In Vancouver, it is one of the educational modules in the Prostate Cancer Supportive Care (PCSC) Program at the Prostate Centre. That PCSC program itself was initiated with support from the Specialist Service Committee of the Doctors of British Columbia and the Ministry of Health. Because it is funded at the provincial level, it has the mission of making its services available at other cancer centres in the province. The recent initiation of an ADT educational program in the British Columbia Cancer Agency is a first step toward serving that provincial mandate. The program in Calgary is currently offered out of the Prostate Cancer Centre there with plans to make it accessible online (see below), to residents living elsewhere in Alberta. With ongoing PCC funding, we aim to have versions of the ADT educational program up and running in both Halifax and Toronto within the 2014 calendar year. We anticipate making the program available in French, and hope to offer it in at least one Quebec cancer centre by 2015. A long-term goal is to provide the program online so that it can be accessible to Canadian PCa patients outside of major metropolitan areas currently offering or planning on offering the live program. From a research perspective, we intend to evaluate and compare both the in person and online versions of the ADT education program, to see how successful they are in: 1) accruing patients starting on ADT, 2) helping patients manage ADT side effects, and 3) keeping dyadic bonds strong for patients and partners challenged by the psychological and psychosexual impact of ADT. Conclusions There are a myriad of post-treatment challenges facing men and partners who are affected by PCa that are not consistently addressed by HCPs. Although a great deal is known about how to help address these, far too often sexual and supportive care is difficult to obtain in a timely manner in all but the largest Canadian centres. ADT is a particularly difficult treatment with serious side effects, the effects of which can be ameliorated by early education and coaching, with MI-informed strategies holding particular promise. Partners also experience psychosocial challenges after treatment, but are often overlooked as a recipient of care in cancer centres, being seen (and understanding themselves) only as support for the man. This is understandable. Men are often stoic and hide their distress, and partners do not want to distract health professionals from the primary bio-medical concerns. Also, they do not want to appear unsupportive by raising concerns, particularly if the patient does not raise them himself. This protective buffering results in misunderstandings, poor communication for the couple and with the health care team, and increased distress for both patients and partners. Standardizing approaches to address the effects of PCa treatment is essential if QoL is to be maintained. A better understanding of the issues on the part of HCPs, development of better knowledge and skills in how to address these, and specific knowledge translation activities to expand survivorship programs in Canadian centres are needed. The initiatives described here will address that need, contributing to improved care for Canadian PCa patients and partners. Furthermore, provision of services and education via the internet will ensure that care is available no matter where one lives in Canada. Acknowledgements The projects described here were awarded by Prostate Cancer Canada and are proudly funded by Movember Foundation. Deborah McLeod thanks the Beatrice Hunter Cancer Research Institute and the Soillse Endowment Fund for their support in the development of the online couples intervention at the QEII / Capital Health. Richard Wassersug thanks the Prostate Cancer Foundation BC and the Specialist Service Committee (a joint program of the Doctors of BC and the BC Ministry of Health) for their support in the development of the Prostate Cancer Supportive Care Program at the Vancouver Prostate Centre. Lauren Walker and John Robinson thank the Prostate Cancer Centre, Calgary, and Andrew Matthew thanks the Princess Margaret Cancer Centre and the Prostate Centre for their support of these initiatives. REFERENCES Alibhai, S.M., Breunis, H., Timilshina, N., Johnston, C., Tomlinson, G., Tannock, I., ... & Naglie, G. (2010). Impact of androgendeprivation therapy on physical function and quality of life in men with nonmetastatic prostate cancer. Journal of clinical oncology, 28(34), 5038–5045. Alibhai, S.M., Gogov, S., & Allibhai, Z. (2006). Long-term side effects of androgen deprivation therapy in men with non-metastatic prostate cancer: a systematic literature review. Critical reviews in oncology/hematology, 60(3), 201–215. Allan, C., Collins, V.R., Frydenberg, M., McLachlan, R.I., & Matthiesson, K.L. (2014). Androgen deprivation therapy complications. Endocrine-related cancer, ERC-13. Armes, J., Crowe, M., Colbourne, L., Morgan, H., Murrells, T., Oakley, C., ... Richardson, A. (2009). Patients’ supportive care needs beyond the end of cancer treatment: a prospective, longitudinal survey. Journal of Clinical Oncology, 27(36), 6172–6179. doi:10.1200/JCO.2009.22.5151 Banthia, R., Malcarne, V.L., Varni, J.W., Ko, C.M., Sadler, G.R., & Greenbergs, H.L. (2003). The effects of dyadic strength and coping styles on psychological distress in couples faced with prostate cancer. Journal of Behavioral Medicine, 26, 31–52. Boehmer, U., & Clark, J.A. (2001). Communication about prostate cancer between men and their wives. Journal of Family Practice, 50(3), 226–231. 276 CONJ • RCSIO Fall/Automne 2014 Casey, R.G., Corcoran, N.M., & Goldenberg, S.L. (2012). Quality of life issues in men undergoing androgen deprivation therapy: A review. Asian journal of andrology, 14(2), 226–231. doi:10.1038/ aja.2011.108; 10.1038/aja.2011.108 Charmaz, K. (1995). Identity dilemmas of chronically ill men. In D. Sabo, & D.F. Gordon (Eds.), Men’s health and illness: Gender, power and the body (pp. 266–291). Thousand Oaks, CA: Sage. Cliff, A.M., & MacDonagh, R.P. (2000). Psychosocial morbidity in prostate cancer: II. A comparison of patients and partners. British Journal of Urology International, 86(7), 834–839. Cooperberg, M.R., Koppie, T.M., Lubeck, D.P., Ye, J., Grossfeld, G.D., Mehta, S.S., & Carroll, P.R. (2003). How potent is potent? Evaluation of sexual function and bother in men who report potency after treatment for prostate cancer: Data from CaPSURE. Urology, 61(1), 190–196. Cormie, P., Newton, R.U., Taaffe, D.R., Spry, N., & Galvão, D.A. (2013). Exercise therapy for sexual dysfunction after prostate cancer. Nature Reviews Urology, 10(12), 731–736. Couper, J., Bloch, S., Love, A., Macvean, M., Duchesne, G.M., & Kissane, D. (2006a), Psychosocial adjustment of female partners of men with prostate cancer: A review of the literature. PsychoOncology,15, 937–953. doi:10.1002/pon.1031 Couper, J.W., Bloch, S., Love, A., Duchesne, G., Macvean, M., & Kissane, D.W. (2006b). The psychosocial impact of prostate doi:10.5737/1181912x244272278 cancer on patients and their partners. The Medical Journal of Australia, 185(8), 428–432. Courtenay, W.H. (2000). Constructions of masculinity and their influence on men’s well-being: A theory of gender and health. Social Science & Medicine, 50, 1385–1401. Coyne, J.C., Ellard, J.H., & Smith, D.A.F. (1990). Social support, interdependence, and the dilemmas of helping. In B.R. Sarason, I.G. Sarason, & G.R. Pierce (Eds.) Social support: An interactional view (pp. 129–149). New York: John Wiley & Sons Crowe, H., & Costello, A.J. (2003). Prostate cancer: Perspectives on quality of life and impact of treatment on patients and their partners. Urologic Nursing, 23, 279–285. Culos-Reed, S.N., Robinson, J.W., Lau, H., Stephenson, L., Keats, M., Norris, S., … Faris, P. (2010). Physical activity for men receiving androgen deprivation therapy for prostate cancer: Benefits from a 16-week intervention. Supportive Care in Cancer, 18(5), 591–599. Elliott, S., Latini, D.M., Walker, L.M., Wassersug, R., & Robinson, J.W. (2010). Androgen deprivation therapy for prostate cancer: Recommendations to improve patient and partner quality of life. The journal of sexual medicine, 7(9), 2996–3010. doi:10.1111/ j.1743-6109.2010.01902.x; 10.1111/j.1743-6109.2010.01902.x Ervik, B., & Asplund, K. (2012). Dealing with a troublesome body: A qualitative interview study of men’s experiences living with prostate cancer treated with endocrine therapy. European Journal of Oncology Nursing, 16(2), 103–108. doi:10.1016/j.ejon.2011.04.005 Eton, D.T. (2005). Psychological distress in spouses of men treated for early-stage prostate carcinoma. Cancer, 103, 2412–2418. Fergus, K.D. (2011). The rupture and repair of the couple’s communal body with prostate cancer. Families, Systems, & Health, 29(2), 95–113. Fleshner, N., Keane, T.E., Lawton, C.A., Mulders, P.F., Payne, H., Taneja, S.S., & Morris, T. (2007). Adjuvant androgen deprivation therapy augments cure and long-term cancer control in men with poor prognosis, nonmetastatic prostate cancer. Prostate cancer and prostatic diseases, 11(1), 46–52. doi:10.1038/sj.pcan.4500982 Fode, M., Ohl, D.A., Ralph, D., & Sonksen, J. (2013). Penile rehabilitation after radical prostatectomy: What the evidence really says. BJU International, 112, 998–1008. Freedland, S.J., Eastham, J., & Shore, N. (2009). Androgen deprivation therapy and estrogen deficiency induced adverse effects in the treatment of prostate cancer. Prostate cancer and prostatic diseases, 12(4), 333–338. doi:10.1038/pcan.2009.35 Garos, S., Kluck, A., & Aronoff, D. (2007). Prostate cancer patients and their partners: Differences in satisfaction indices and psychological variables. Journal of Sexual Medicine, 4, 1394–1403. Hagedoorn, M., Buunk, B.P., Kuijer, R.G., Wobbes, T., & Sanderman, R. (2000). Couples dealing with cancer: Role and gender differences regarding psychological distress and quality of life. PsychoOncology, 9(3), 232–242. Hanisch, L.J., Gooneratne, N.S., Soin, K., Gehrman, P.R., Vaughn, D.J., & Coyne, J.C. (2011). Sleep and daily functioning during androgen deprivation therapy for prostate cancer. European journal of cancer care, 20(4), 549–554. doi:10.1111/j.13652354.2010.01226.x; 10.1111/j.1365-2354.2010.01226.x Harden, J., Schafenacker, A., Northouse, L., Mood, D., Smith, D., Pienta, K., … Baranowski, K. (2002). Couples’ experiences with prostate cancer: Focus group research. Oncology Nursing Forum, 29, 701–709. Hawes, S., Malcarne, V., Ko, C., Sadler, G., Banthuia, R., Sherman, S., … Schmidt, J. (2006). Identifying problems faced by spouses and partners of patients with prostate cancer. Oncology Nursing Forum, 33(4), 807–814. Heathcote, P.S., Mactaggart, P.N., Boston, R.J., James, A.N., Thompson, L.C., & Nicol, D.L. (1998). Health-related quality of life in Australian men remaining disease-free after radical prostatectomy. The Medical journal of Australia, 168(10), 483–486. doi:10.5737/1181912x244272278 Helgason, A.R., Adolfsson, J., Dickman, P., Arver, S., Fredrikson, M., & Steineck, G. (1997). Factors associated with waning sexual function among elderly men and prostate cancer patients. The Journal of urology, 158(1), 155–159. doi:10.1097/00005392199707000-00050 (1997) Hovey, R.B., Cuthbertson, K.E.S., Birnie, K.A., Robinson, J.W., Thomas, B.C., Massfeller, H.F., ... Scott, C. (2012). The influence of distress on knowledge transfer for men newly diagnosed with prostate cancer. Journal of Cancer Education, 27(3), 540–545. doi:10.1007/s13187-012-0343-2 Kukula, K.C., Jackowich, R.A., & Wassersug, R.J. (2014). Eroticization as a factor influencing erectile dysfunction treatment effectiveness. International journal of impotence research. 26(1),1–6. Lee, M., Jim, H.S., Fishman, M., Zachariah, B., Heysek, R., Biagioli, M., & Jacobsen, P.B. (2014). Depressive symptomatology in men receiving androgen deprivation therapy for prostate cancer: A controlled comparison. Psycho‐Oncology. [Epub ahead of print] Lilleby, W., Fosså, S.D., Wæhre, H.R., & Olsen, D.R. (1999). Longterm morbidity and quality of life in patients with localized prostate cancer undergoing definitive radiotherapy or radical prostatectomy. International Journal of Radiation Oncology, Biology, Physics, 43(4), 735–743. Lundahl, B., & Burke, B.L. (2009). The effectiveness and applicability of motivational interviewing: A practice‐friendly review of four meta-analyses. Journal of Clinical Psychology, 65(11), 1232–1245. Lundahl, B., Moleni, T., Burke, B.L., Butters, R., Tollefson, D., Butler, C., & Rollnick, S. (2013). Motivational interviewing in medical care settings: A systematic review and meta-analysis of randomized controlled trials. Patient education and counselling, 93(2), 157– 168. doi:http://dx.doi.org/10.1016/j.pec.2013.07.012 Manne, S.L. (1999). Intrusive thoughts and psychological distress among cancer patients: the role of spouse avoidance and criticism. Journal of Consulting and Clinical Psychology, 67, 539–546. Manne, S., Badr, H., Zaider, T., Nelson, C., & Kissane, D. (2010). Cancer-related communication, relationship intimacy, and psychological distress among couples coping with localized prostate cancer. Journal of Cancer Survivorship, 4(1), 74–85. Manne, S.L., Kissane, D.W., Nelson, C.J., Mulhall, J.P., Winkel, G., & Zaider, T. (2011). Intimacy‐enhancing psychological intervention for men diagnosed with prostate cancer and their partners: A pilot study. The Journal of Sexual Medicine, 8(4), 1197–1209. doi:10.1111/j.1743-6109.2010.02163.x Matthew, A.G., Goldman, A., Trachtenberg, J., Robinson, J., Horsburgh, S., Currie, K., & Ritvo, P. (2005). Sexual dysfunction after radical prostatectomy: Prevalence, treatments, restricted use of treatments and distress. The Journal of urology, 174(6), 2105–2110. doi:10.1097/01.ju.0000181206.16447.e2 (2005) McGinty, H.L., Phillips, K.M., Jim, H.S., Cessna, J.M., Asvat, Y., Cases, M.G., ... Jacobsen, P.B. (2014). Cognitive functioning in men receiving androgen deprivation therapy for prostate cancer: A systematic review and meta-analysis. Supportive Care in Cancer, 1–10. McLeod, D., Curran, J., Dumont, S., White, M., & Charles, G. (2013). The Interprofessional Psychosocial Oncology Distance Education (IPODE) project: perceived outcomes of an approach to healthcare professional education. Journal of Interprofessional Care, 28(3), 254–259. McLeod, D.L., Curran, J., & White, M. (2011). Interprofessional psychosocial oncology education: Nurse outcomes of the IPODE project. Psycho-oncologie, 5(2), 109–115. Meyer, J.P., Gillatt, D.A., Lockyer, R., & Macdonagh, R. (2003). The effect of erectile dysfunction on the quality of life of men after radical prostatectomy. BJU international, 92(9), 929–931. Miller, W.R., & Rollnick, S. (2013). Motivational Interviewing: Helping People Change (3rd ed.). New York: Guilford. CONJ • RCSIO Fall/Automne 2014 277 Mirone, V., Imbimbo, C., Palmieri, A., Longo, N., & Fusco, F. (2003). Erectile dysfunction after surgical treatment. International Journal of Andrology, 26(3), 137–140. Navon, L., & Morag, A. (2003). Advanced prostate cancer patients’ ways of coping with the hormonal therapy’s effect on body, sexuality and spousal ties. Qualitative Health Research, 13(10), 1378–1392. Neese, L.E., Schover, L.R., Klein, E.A., Zippe, C., & Kupelian, P.A. (2003). Finding help for sexual problems after prostate cancer treatment: A phone survey of men’s and women’s perspectives. Psycho-Oncology, 12, 463–473. Northouse, L.L., Mood, D.W., Montie, J.E., Sandler, H.M., Forman, J.D., Hussain, M., … Kershaw, T. (2007). Living with prostate cancer: Patients’ and spouses’ psychosocial status and quality of life. Journal of Clinical Oncology, 25(27), 4171–4177. Ng, E., Corica, T., Turner, S., Lim. A., & Spry, N. (2014). Sexual function in men with castrate levels of testosterone: Observations of a subgroup of sexually active men with prostate cancer undergoing androgen deprivation. Open Journal of Urology, 4, 98–103. doi:10.4236/oju.2014.47017 Ogah, I., & Wassersug, R.J. (2013, November). How reliable are “reputable sources” for medical information on the Internet? The case of hormonal therapy to treat prostate cancer. In Urologic Oncology: Seminars and Original Investigations (Vol. 31, No. 8, pp. 1546–1552). NY: Elsevier. Oliffe, J. (2002). In search of a social model of prostate cancer: Finding out about Bronch. In S. Pearce, & V. Muller (Eds.). Manning the next millennium: Studies in masculinities (pp. 69–84). Perth, WA: Black Swan. Pedersen, K.V., Carlsson, P., Rahmquist, M., & Varenhorst, E. (1993). Quality of life after radical retropubic prostatectomy for carcinoma of the prostate. European Urology, 24, 7–11. Perczek, R.E., Burke, M.A., Carver, C.S., Krongard, A., & Terris, M.K. (2002). Facing a prostate cancer diagnosis. Who is at risk for increased distress? Cancer, 94, 2923–2928. Perez, M.A., Skinner, E.C., & Meyerowitz, B.E. (2002). Sexuality and intimacy following radical prostatectomy: Patient and partner perspectives. Health Psychology, 21, 288–293. Pitceathly, C., & Maguire, P. (2003). The psychological impact of cancer on patients’ partners and other key relatives: A review. European Journal of Cancer, 39(11), 1517–1524. Resendes, L.A., & McCorkle, R. (2006). Spousal responses to prostate cancer: An integrative review. Cancer Investigation, 24, 192–198. Roesch, S.C., Adams, L., Hines, A., Palmores, A., Vyas, P., Tran, C., … Vaughn, A. (2005). Coping with prostate cancer: A meta-analytic review. Journal of Behavioral Medicine, 8(3), 281–293. Ross, R.W., & Small, E.J. (2002). Osteoporosis in men treated with androgen deprivation therapy for prostate cancer. The Journal of urology, 167(5), 1952–1956. Rubak, S., Sandbæk, A., Lauritzen, T., & Christensen, B. (2005). Motivational interviewing: A systematic review and meta-analysis. The British Journal of General Practice, 55(513), 305–312. Saylor, P.J., & Smith, M.R. (2009). Prostate cancer: How can we improve the health of men who receive ADT?. Nature Reviews Urology, 6(10), 529–531. Schover, L.R. (2001). Sexuality and cancer: For the man who has cancer and his partner. New York: American Cancer Society. Sharpley, C.F., Bitsika, V., Wootten, A.C., & Christie, D.R. (2014). Differences in major depressive disorder and generalised anxiety disorder symptomatology between prostate cancer patients receiving hormone therapy and those who are not. Psycho‐ Oncology. Apr 30. doi:10.1002/pon.3566 [Epub ahead of print] Skerrett, K. (2010). “Good enough stories”: Helping couples invest in one another’s growth. Family Process, 49, 503–516. Soeyonggo, T., Locke, J., Del Giudice, M.E., Alibhai, S., Fleshner, N.E., & Warde, P. (2014). National survey addressing the information 278 CONJ • RCSIO Fall/Automne 2014 needs of primary care physicians: Side effect management of patients on androgen deprivation therapy. Canadian Urological Association Journal, 8(3–4), E227. Soloway, C.T., Soloway, M.S., Kim, S.S., & Kava, B.R. (2005). Sexual, psychological and dyadic qualities of the prostate cancer ‘couple’. British Journal of Urology International, 95(6), 780–785. Steginga, S.K., Occhipinti, S., Dunn, J., Gardiner, R.A., Heathcote, P., & Yaxley, J. (2001). The supportive care needs of men with prostate cancer. Psycho-Oncology, 10(1), 66–75 Tanner, T., Galbraith, M., & Hays, L. (2011). From a woman’s perspective: Life as a partner of a prostate cancer survivor. Journal of Midwifery & Women’s Health, 56(2), 154–160. doi:10.1111/j.1542-2011.2010.00017.x (2011) Tran, S., Walker, L.M., Wassersug, R.J., Matthew, A.G., McLeod, D.L., & Robinson, J.W. (2014). What do Canadian uro-oncologists believe patients should know about androgen deprivation therapy?. Journal of Oncology Pharmacy Practice, 20(3), 199–209. doi:10.1177/1078155213495285 van der Wielen, G.J., Mulhall, J.P., & Incrocci, L. (2007). Erectile dysfunction after radiotherapy for prostate cancer and radiation dose to the penile structures: A critical review. Radiotherapy and Oncology, 84(2), 107–113, doi:10.1016/j.radonc.2007.07.018 Walker, L.M., & Robinson, J.W. (2011). A description of heterosexual couples’ sexual adjustment to androgen deprivation therapy for prostate cancer. Psycho‐Oncology, 20(8), 880–888. Walker, L.M., & Robinson, J.W. (2012). Sexual adjustment to androgen deprivation therapy struggles and strategies. Qualitative health research, 22(4), 452–465. doi:10.1177/1049732311422706 Walker, L.M., Tran, S., & Robinson, J.W. (2013). Luteinizing hormone– releasing hormone agonists: A quick reference for prevalence rates of potential adverse effects. Clinical Genitourinary Cancer, 11(4), 375–384. Walker, L.M., Tran, S., Wassersug, R.J., Thomas, B., & Robinson, J.W. (2013, October). Patients and partners lack knowledge of androgen deprivation therapy side effects. In Urologic Oncology: Seminars and Original Investigations (Vol. 31, No. 7, pp. 1098– 1105). Elsevier. doi:10.1016/j.urolonc.2011.12.015 Wall, B.A., Galvão, D.A., Fatehee, N., Taaffe, D.R., Spry, N., Joseph, D., & Newton, R.U. (2014). Maximal exercise testing of men with prostate cancer being treated with ADT. Medicine and science in sports and exercise. Wibowo, E., Wassersug, R., Warkentin, K., Walker, L., Robinson, J., Brotto, L., & Johnson, T. (2012). Impact of androgen deprivation therapy on sexual function: A response. Asian Journal of Andrology, 14(5), 793. doi:10.1038/aja.2012.60;10.1038/ aja.2012.60 Wolin, K.Y., Colditz, G.A., & Proctor, E.K. (2011). Maximizing benefits for effective cancer survivorship programming: Defining a dissemination and implementation plan. The oncologist, 16(8), 1189–1196. doi:10.1634/theoncologist.2011-0054 Wooten, A., Burney, S., Frydenberg, M., & Foroudi, F. (2007). Psychological adjustment of survivors of localised prostate cancer: The need for sexual rehabilitation. Psycho-Oncology, 16, S54–S55 Wu, L.M., Diefenbach, M.A., Gordon, W.A., Cantor, J.B., & Cherrier, M.M. (2013, November). Cognitive problems in patients on androgen deprivation therapy: A qualitative pilot study. In Urologic Oncology: Seminars and Original Investigations (Vol. 31, No. 8, pp. 1533–1538). Elsevier. doi:10.1016/j. urolonc.2012.07.003; 10.1016/j.urolonc.2012.07.003 Zaider, T., Manne, S., Nelson, C., Mulhall, J., & Kissane, D. (2012). Loss of masculine identity, marital affection, and sexual bother in men with localized prostate cancer. The journal of sexual medicine, 9(10), 2724–2732. doi:10.1111/j.17436109.2012.02897.x; 10.1111/j.1743-6109.2012.02897.x doi:10.5737/1181912x244272278
