Flannagan, Carrie

Loughlin, Anna

McCaughan, Eilis

O'Connor, Sean

Parahoo, Kader

English

Ulster University's Research Portal

reviewsection reviewsectionEilís McCaughan, Carrie Flannagan,Sean O’Connor, Anna Loughlin, Kader ParahooMaximising sexual wellbeing: The development and evaluation of resources to support men with prostate cancer and their partners BackgroundPROSTATE CANCER is the most commonly diagnosed cancer in Ireland and accounts for almost 30% of the total number of male cancers (excluding the common skin cancer). The National Cancer Registry Ireland estimates annual average incidence of prostate cancer to be more than 3,500 patients in the period 2016 to 2018.1 While incidence rates are rising, partly associated with improved screening and changes in the population age profile, the 5- and 10-year survival rates continue to improve.2,3,4 As a result, increasing numbers of men are living with the disease and with significant, long-term side-effects associated with different treat-ment approaches.5Sexual challenges (such as erectile dysfunction, reduced libido, dry orgasm and loss of masculinity) are the most frequently occurring long-term symptoms after treatments for prostate cancer.6,7,8 In a recent UK-wide survey of more than 35,000 men, more than 80% reported poor sexual function post-treatment.9 Evidence states clearly that all men after a diagnosis of prostate cancer should have early and ongoing access to sexual rehabilita-tion services.10,11 However, the recent UK survey stated that nearly 60% of men did not receive adequate information or support to cope with the impact of prostate cancer treatment on their sexual wellbeing.9 Changes to sexual function are an effect of all treatments for prostate cancer (surgery, radiation, androgen therapy or combi-nation treatments) and are regarded as a major issue which can result in increased psychological morbidity, including depression and relationship challenges as well as reduction in confidence and overall quality of life [12,13]. Men and their partners have many challenges around their sexual health and wellbeing, following a prostate cancer treatment.14,15Getting support to manage these challenges may be limited due to fragmented  cancer sexual care services within most prostate cancer treatment settings in the Ireland and UK [8,12,15]. To date, there has been an ‘ad hoc approach’ to the delivery of care, result-ing in ‘patchy’ services and lack of standardised practice. For the few who do receive sexual support, treatment has mainly used a biomedical approach, focusing on erectile dysfunction (ED).  Sup-port regarding the psychosocial care including impact on partners is often limited.16,17Healthcare providers can feel unequipped to deal with sexual health issues and report a lack of resources to support patients and their partners. There is evidence that men are often reluctant to discuss sexual issues, in particular, those that are seen as sensi-tive and personal topics.17 Among the reasons for this is the fear of embarrassment by both men and health professionals (HPs), a lack of HPs knowledge and experience of broaching the topic, and knowing how to offer appropriate support to address patients’ psychosexual problems.18Many men who are treated for prostate cancer are older and HPs can make wrong assumptions regarding their need for sexual care.19 Patients are often left in the dark about the possible psycho-sexual consequences of the different forms of treatment and do not know how, and where, to seek information and support to self-manage their condition. Also, HPs may have limited time available to provide this support.20,21 These challenges may be compounded when HPs work with patients from minority groups, such as single men, black men or men who have sex with men. Many gay men report that HPs fail to ask about sexual orientation during initial consultations and assume they are heterosexual.20 Effective, evidence-based care and support is required to help manage these needs.Online or web-based interventions can provide access to ongo-ing, easily accessible information, support and education for users from diverse backgrounds, including HPs and patients. They are also economically sustainable.22 Online resources should not replace face-to-face care, but rather should complement it. For patients, there is evidence that tailoring online support interven-tions is more effective, with increased user engagement when compared to standardised information.23 Responding to the need to support men and their partners and to provide training for HPs, TrueNTH (Movember) in collaboration with Prostate Cancer UK, funded a programme of work which resulted in the development of three resources.24 Following train-ing, HPs would provide face-to-face support, routinely in practice, and then signpost men and their partners to an online self-man-agement resource.  The three resources are:  Resource 1: An elearning sexual wellbeing programme for HPs caring for people living with prostate cancer  Resource  2: A framework to guide sexual wellbeing clinical discussions, EASSi Resource 3: An online self-management sexual wellbeing pro-gramme for men and partners living with prostate cancer. ?? cancerprofessional Autumn 2020  Autumn 2020  cancerprofessional ?? Development and evaluation of three resourcesThe initial development of the sexual wellbeing resources was informed by a review of the relevant literature on men’s, partners and the HP’s perspective of their psychosexual needs, and qualita-tive interviews and focus groups with more than 80 men and their partners, and 27 HPs with clinical experience in this area. All three sexual wellbeing resources were carefully constructed, tested with user groups (125 users involved) and further refined over an 18-month period. This was followed by formal evaluation with HPs, patients and partners. Although the three resources can be used separately, they have been designed to be interrelated and reflect both the training needs of the HPs and the need to provide self-management strategies to men being treated for prostate cancer, and their partners. From January 2020, in collaboration with the Irish Cancer Society and Urology team, St James’s Hospital, we modified the resources (developed for the United Kingdom population) for use in an Irish context.The resourcesResource 1: ‘Talking about sex after prostate cancer’Available from: https://talkingaboutsex-prostatecancer.orgThis is an e-learning programme designed for all HPs who pro-vide support for men and their partners living with prostate cancer (Figure 1). It aims to:•  Increase awareness of sexual care needs and the role of HPs• Promote routine sexual care conversation, as part of the consultation•  Provide strategies to guide conversations around sexual wellbe-ing and prostate cancer•  Introduce a standard communication framework [Resource 2, EASSi Framework]•  Signpost men (and partners) to appropriate specialist services.Evaluation of Resource 1Completion of the e-learning module by 103 HPs resulted in significant changes in positive attitudes and beliefs around sexual wellbeing in prostate cancer care. After working through the module, the participants felt more equipped with the language to initiate conversations. They viewed the resource as clear and concise, and described it as relevant and useful in their practice. The challenge will be to ensure that the strategies and techniques provided in the e-learning module become embedded in routine, standardised practice when caring for all men and their partners coping with prostate cancer.Resource 2: EASSi FrameworkAvailable from: https://eassiclinic.lifeguidewebsites.orgBased on previous work it was recognised how difficult it can be for HPs to talk about sex with patients.17 There appeared to be a need for a ‘framework’ to facilitate sexual wellbeing discussions routinely in the clinical setting.25The ‘Engagement, Assessment, Support and Sign-posting [EASSi] programme’, a communication framework for HPs, was developed (Figure 2). This framework is designed to be used during routine appointments. It provides the language, structure and content to help guide brief but meaningful conversations abound sexual wellbeing with men and partners. Evaluation of Resource 2reviewsectionreviewsectionSEXUAL WELLBEING ?? cancerprofessional Autumn 2020  Autumn 2020  cancerprofessional ?? Figure 2: Illustrated EASSi Communication FrameworkFigure 1: Summary page for Resource 1: ‘Talking about sex after prostate cancer’The EASSi Framework was tested in clinical areas using the hand-held tablet, and a shared screen between HPs and patients/partners. Using a mixed-methods approach, the experience of using the EASSi Framework in routine practice was explored after nearly 90 consultations. The EASSi Framework helped initiate, manage and structure discussions. HPs and the patients reported that it added depth to the conversation,  while still managing to keep it brief. Resource 3: Online self-management sexual wellbeing programmeAvailable from: prostateireland.lifeguidewebsites.orgThis is a web-based programme that provides personalised information, support and, to help men and partners, cope with the sexual challenges associated with treatment for prostate cancer (Figure 3). Key features of the online sexual wellbeing self-manage-ment programme include:•  Personalised for men and partners (based on treatment, rela-tionship status and sexual orientation)•  It can be accessed at any time-point, before, during, after treatment•  Men and partners to select and view content as required •  It includes specific information for targeted populations includ-ing black men, single men, trans women and those receiving palliative care•  Adapted for a Republic of Ireland  population Evaluation of Resource 3The online recruitment for Resource 3 resulted in more than 250 registered users from around the UK [February 2019 – December 2019].  There were significant improvements in the: •  extent to which participants agreed that they had sufficient information to manage the impact of prostate cancer on their sex life [mean difference 0.78/4; p = 0.001]•  perceived potential to have a satisfying sex life following treat-ment [0.26/4; p = 0.001].Qualitative data showed that users found the resource an effective way to provide men and their partners with the informa-tion and support they needed to address the impact of prostate cancer treatment on their sexual wellbeing. The flexibility of the programme, with a tailored approach to make the information relevant for a mixed population in terms of treatment, sexual orientation and relationship status, was a positive feature that improved accessibility and user engagement. Providing practical information and advice, coupled with a wider approach to sexual satisfaction, were effective ways in which to improve the users outlook on their sexual wellbeing going forward.ConclusionThere is an increasing number of men experiencing sexual chal-lenges post treatment for prostate cancer. Partners’ sexual lives are also impacted. These issues are not routinely addressed and men are dissatisfied with the support they receive. Sex is perceived as a reviewsectionreviewsectionSEXUAL WELLBEING ?? cancerprofessional Autumn 2020  Autumn 2020  cancerprofessional ??  Autumn 2020  cancerprofessional ?? Figure 3: Main menu page, Resource 3: Online self-management resourcedifficult topic to discuss and HPs appear ill prepared to deliver this care. It is essential that psychosexual care is normalised and inte-grated within routine practice and that men (and partners) have access to the support they need to ensure they achieve a satisfying sex life. The provision and evaluation of these three resources have shown that they can help to provide this important support. Eilís McCaughan is a Professor of Cancer Care, Institute of Nurs-ing and Health Research (INHR), and Carrie Flannagan is Project Manager, INHR, at Ulster University, Jordanstown, Northern Ireland (NI), Sean O’Connor is a Research Fellow, Centre for Public Health, at Queen’s University Belfast, NI, Anna Loughlin is a Clinical Nurse Specialist – Prostate Cancer Survivorship, SACC Directorate, at St James’s Hospital, Dublin, and Kader Parahoo is Research Director, INHR, Ulster UniversityReferences 1. National Cancer Registry Ireland, Annual Statistical Report, November 2018. Available from: https://www.ncri.ie/data/incidence-statistics2. Pishgar F, Ebrahimi H, Saeedi Moghaddam S, et al. Global, regional and national burden of prostate cancer, 1990 to 2015: results from the global burden of disease study. J Urol 2018; 199: 1224–-12323. Miller KD, Nogueira L, Mariotto AB, et al. Cancer treatment and survivorship statistics. CA Cancer J Clin 2019; 69: 363-3854. Irish Prostate Cancer Outcomes Research (IPCOR), Annual Report 2018. Available from: https://www.ipcor.ie/wp-content/uploads/2019/01/IPCOR_Annual-Report2018_Digital_NEW.pdf5. Donovan JL, Hamdy FC, Lane JA, et al. Patient-reported outcomes after monitoring, surgery, or radiotherapy for prostate cancer. N Engl J Med 2016; 13: 1425-14376. Gaither TW, Awad MA, Osterberg EC, et al. The natural history oferectile dysfunction after prostatic radiotherapy: A systematic review and meta-analysis. J Sex Med 2017; 14: 1071-10787. Brundage M, Sydes MR, Parulekar WR, et al. Impact of radiotherapy when added to androgen-deprivation therapy for locally advanced prostate Cancer: long-term quality-of-Life outcomes from the NCIC CTG PR3/MRC PR07 randomized trial. J Clin Oncol 2015; 33: 2151-21578. Dyer A, Kirby M, White ID, et al. Management of erectile dysfunction after prostate cancer treatment: cross-sectional surveys of the perceptions and experiences of patients and healthcare professionals in the UK. BMJ Open 2019; 9: e0308569. Downing A, Wright P, Hounsome L, et al. Quality of life in men living withadvanced and localised prostate cancer in the UK: a population-based study. LancetOncol 2019; 20: 436-44710. National Institute for Health and Care Excellence. Prostate cancer: diagnosis andmanagement. Clinical guideline [NG131]. May 2019. Available from https://www.nice.org.uk/guidance/ng131.11. Kirby M, White I, Butcher J. Development of UK recommendations on treatment for post-surgical erectile dysfunction. International J Clin Prac 2014; 68: 590-60812. Gavin A, Drummond F, Donnelly C, et al. Patient-reported ‘ever had’ and ‘current’ long-term physical symptoms after prostate cancer treatments. BJU Inter 2015; 116: 397-40613. Sanda MG, Dunn RL, Michalski J, et al. Quality of life and satisfaction with outcome among prostate-cancer survivors. N Engl J Med 2008; 358: 1250-126114. Guercio C, Mehta A. Predictors of patient and partner satisfaction following radical prostatectomy. Sex Med Rev 2018; 6: 295-30115. Drummond F, Gavin A, Sharp L. Incongruence in treatment decision making is associ-ated with lower health-related quality of life among prostate cancer survivors: results from the PiCTure study. Supp Care Cancer 2018; 26: 1645-1654reviewsectionreviewsectionSEXUAL WELLBEING ?? cancerprofessional Autumn 2020  Autumn 2020  cancerprofessional ?? Figure 3: Main menu page, Resource 3: Online self-management resource16. Bamidele O, Lagan B, McGarvey H, et al. ‘It might not have occurred to my husband that this woman, his wife who is taking care of him has some emotional needs as well…’: the unheard voices of partners of Black African and Black Caribbean men with prostate cancer. Supportive Care in Cancer 2019; 27: 1089-109717. O’Connor S, Connaghan J, Maguire R, et al. Healthcare professional perceived barriers and facilitators to discussing sexual wellbeing with patients after diagnosis of chronic illness: A mixed-methods evidence synthesis. Pat Edu Coun 2019; 102: 850-86318. Dyer K, das Nair R. Why don’t healthcare professionals talk about sex? A systematic review of recent qualitative studies conducted in the United Kingdom. J Sex Med 2013; 10: 2658-267019. Reese JB, Sorice K, Beach MC, et al. Patient-provider communication about sexual concerns in cancer: a systematic review. J Cancer Surviv 2017; 11: 175-18820. Kotronoulas G, Papadopoulou C, Patiraki E. Nurses’ knowledge, attitudes, and prac-tices regarding provision of sexual health care in patients with cancer: critical review of the evidence. Support Care Cancer 2009; 17: 479-50121. King A, Evans M, Moore T, et al. Prostate cancer and supportive care: a systematic review and qualitative synthesis of men’s experiences and unmet needs. Eur J Cancer Care 2015; 24: 618-63422. McAlpine H, Joubert L, Martin-Snaches F, et al. Systematic review of types and effi-cacy of online interventions for cancer patients. Pat Edu Coun 2015; 98: 283-29523. Corbett T, Singh K, Payne L. et al. Understanding acceptability of and engagement with web-based interventions aiming to improve quality of life in cancer survivors: A synthesis of current research. Psycho-Oncology 2018; 27: 22-3324. Movember Foundation. Available from: https://truenth.org/en-gb/; https://uk.movember.com/about/prostate-cancer (Accessed May 2020)25. McCaughan E, Parahoo K, Flannagan C et al. Development of a conceptual frame-work to improve sexual wellbeing communication in routine prostate cancer care. Pat Edu Coun 2019 (In press)reviewsectionreviewsectionSEXUAL WELLBEING ?? cancerprofessional Autumn 2020  Autumn 2020  cancerprofessional ??  Autumn 2020  cancerprofessional ?? 

Maximising sexual wellbeing: The development and evaluation of resources to support men with prostate cancer and their partners

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Maximising sexual wellbeing: The development and evaluation of resources to support men with prostate cancer and their partners

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