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
The number of attendees varied across the 6 education sessions, with introduction to prostate cancer and sexual health being the best attended. This is consistent with the literature concerning the specific unmet supportive care and information needs in this population10,13 and with the value that men have placed on taking an active role in the decisions around their prostate cancer treatment.30 It is also possible that attendance varied because modules were introduced in a stepwise fashion and were offered on different schedules. Patients and partners both reported a high degree of satisfaction with all of the modules’ education sessions, reporting that the length, content, and delivery were appropriate.
Since 2013, a wide research portfolio has grown alongside the program. It has acted as a recruitment site for multicenter national studies and has attracted funding for several in-house research projects and evaluations. In addition, the VPC has implemented clinic-wide electronic collection of several patient-reported outcome measures using iPads. Patients have the option of contributing their data to Canadian (PC360o) and Global (TrueNTH Global Registry – Prostate Cancer Outcomes) registries for prostate cancer. The program has also created educational opportunities by supporting postdoctoral fellows. It has also provided a rich environment for urology and radiation oncology residents and fellows to participate in a multidisciplinary supportive care team, ensuring that the next generation of surgeons and oncologists recognize the importance of this approach to care.
Limitations
This is a brief descriptive study that relies on a mixture of anonymized survey and clinical chart data. Because the program’s patient feedback forms are anonymous, we are not able to link satisfaction scores to differences in sociodemographic, clinical, or prognostic factors. We also have not directly measured clinical, psychological, or quality of life outcomes; however, all 3 will be included in future studies of the program. An additional limitation is that not all program modules were offered for the entirety of the study duration and are offered at different frequencies. Thus, some modules have disproportionally higher participation rates than others. Lastly, we are missing clinical information for 16% of our participants who are not patients at the VPC.
,The program is offered within an academic and teaching hospital in a major metropolitan center and depends on the work of a large interdisciplinary team. Cancer programs that are not embedded within a similar environment, such as those located in smaller rural communities, may not have access to the specialized clinical professionals who run our program, affecting its direct generalizability to these locations. Other specialists, such as palliative care teams, could be well positioned to provide support in locations that do not have a similar level of resource available. Furthermore, some program elements will be adapted to be delivered using telemedicine technology, which is an additional approach to improving access for patients who are beyond the reach of a tertiary care facility.
Conclusions
There is a growing need to provide consistent and comprehensive supportive care to patients with prostate cancer and their partners and families throughout the disease and treatment journey. The PCSC Program uses a multidisciplinary, evidenced-based, disease-focused approach to support informed treatment decision-making and address the physical, psychological, and psychosocial effects of prostate cancer diagnosis and treatment. We proactively collect data on disease, personal demographic details, and symptoms or quality of life, supporting opportunities to partner with researchers with the goal of further improving quality of life based on evidenced-based practices. Going forward, we will conduct detailed examinations of the costs and benefits (in terms of symptom management and quality of life) of the PCSC Program, further contributing to the development of evidence-based best practices for supportive care for men with prostate cancer and their families.
