Development, implementation, and evaluation of a prostate cancer supportive care program
Many men who are diagnosed with prostate cancer face long-term treatment-related health effects that will affect their quality of life and have cost implications for the health system. In this article, we describe and assess the use of and satisfaction with the Prostate Cancer Supportive Care (PCSC) Program, which is a comprehensive, evidence-based, modular program that aims to address these concerns. We include data from patient medical records, PCSC Program registration forms and attendance records, and anonymized participant feedback forms. We examine the clinical and sociodemographic characteristics of program participants, program participation rates, and satisfaction with individual program modules. Among the 1,269 registrants, 1,206 (84%) participated in the program. Modules that provided information on prostate cancer and treatment options and offered sexual health support had the most participants (29% and 55% of total program participants, respectively). Satisfaction with all program components was high among both survivors and their partners (average score, 3.6 out of 4). Robust evaluations of the program's effects on quality of life and health system costs are ongoing. There is a growing need to provide consistent and comprehensive support to prostate cancer survivors and their partners and families. As such, we recommend that alongside direct oncologic care, clinicians assess their patients' needs for supportive care services and refer them to programs that will provide comprehensive support throughout the disease and treatment journey. Funding The Michael Smith Foundation for Health Research (grant number 16605) and Prostate Cancer Canada (grant number PDF2016-1270)
Accepted for publication November 20, 2018
Correspondence Lindsay Hedden, PhD; lindsay.hedden@ubc.ca
Disclosures Dr Elliot served on the board for Aceras, and has given a lecture for Pentopharm. Dr Higano has received research grants from Aptero, Aragon, Astellas, Astra-Zenica, Bayer, Dentreon, Hoffman-Laroche, Medivation, and Pfizer. Dr Higano also served on the advisory board or in a consultancy role for Astellas, Bayer, Blue Earth, Cloris, Orion, and Tolmar.
©2018 Frontline Medical Communications
doi https://doi.org/10.12788/jcso.0438
Prostate cancer is the most common malignancy diagnosed in Canadian men. An estimated 21,300 Canadian men were diagnosed with the disease in 2017, representing 21% of all new cancer cases.1 There are about 176,000 men living with prostate cancer in Canada.1 In the United States, there were 2,778,630 survivors of prostate cancer as of 2012 and that population is expected to increase by more than 1 million (40%) to 3,922,600 by 2022.2
Although 96% of men diagnosed with prostate cancer now survive longer than 5 years3, many will suffer from treatment-related sequelae that can have a profound effect on quality of life for themselves and their partners.4,5 Impacts include sexual, urinary, and bowel dysfunctions6 owing to treatment of the primary tumor as well as reduced muscle and bone mass, osteoporosis, fatigue, obesity, and glucose intolerance or diabetes7 owing to androgen-deprivation therapy (ADT). Many men also suffer from psychological issues such as depression, anxiety, anger and irritability, sense of isolation, grief, and loss of masculinity.8,9 The psychological impacts also continue well beyond the completion of treatment and can be significant for both patients and their partners.5,8
With posttreatment longevity and the associated complex sequelae, prostate cancer is being viewed increasingly as a chronic disease whose effects must be managed for many years after the completion of primary treatment. Supportive care that “[manages] symptoms and side effects, enables adaptation and coping, optimizes understanding and informed decision-making, and minimizes decrements in functioning”10 is becoming recognized as a critical component of direct oncologic care before, during, and after treatment. Health care professionals, scientists, governments, and patient advocates are increasingly calling for the development of comprehensive supportive care programs improve the quality of life for people diagnosed with cancer. A common model for survivorship care is a general program for all cancer survivors that provides disease- and patient-specific care plans. These care plans outline patients’ prior therapies, potential side effects, recommendations for monitoring (for side effects or relapse of cancer), and advice on how patients can maintain a healthy lifestyle.11 However, there are few survivorship programs for men with prostate cancer and their partners, and the evidence base around best practices for these programs is scant.12 Furthermore, up to 87% of men with a prostate cancer diagnosis report specific and significant unmet supportive care needs,10,13 with sexuality-related and psychological issues10,14 being the areas of greatest concern.
,To address the complex supportive care needs of men with prostate cancer in British Columbia, Canada, the Vancouver Prostate Centre (VPC) and Department of Urologic Sciences at the University of British Columbia developed the multidisciplinary Prostate Cancer Supportive Care (PCSC) Program. The program aims to address the challenges of decision-making and coping faced by men with prostate cancer and their partners and family members along the entire disease trajectory. Services are provided at no cost to participants. Here, we outline the guiding principles for the PCSC program and its scope, delivery, and evaluation. We provide information on the more than 1,200 patients who have participated in the program since its inception in January of 2013, the rates of participation across the different program modules, and a selection of patient satisfaction measures. We also discuss successes and limitations and ongoing research and evaluation efforts, providing lessons learned to support the development of other supportive care programs in Canada and internationally.
