In their Own Words: Patient Experiences with Patient Support Programs

Résumé fourni par la source

Objectives The Canadian Arthritis Patient Alliance (CAPA), an independent and patient-led organization, developed, launched, and analyzed results of a national survey to evaluate the experiences of people with rheumatic diseases using Patient Support Programs (PSPs). PSPs were introduced in the early 2000s alongside biologic medications due to gaps in publicly funded healthcare services as a way to provide infusions and nursing support to patients needing these medications.[1] Despite their necessity, limited evidence exists on how patients experience these programs. This project aimed to understand the value, accessibility, and gaps in PSP services through a patient lens, and to generate recommendations to improve patient support, education, and engagement in care. Methods The survey was co-developed by people living with inflammatory arthritis, many with firsthand experience using PSPs. It explored domains such as patient-provider communication, consent, and information sharing, and access to pharmacy and insurance services. The survey was open from June 2023 to January 2024, with 375 respondents across Canada. Descriptive statistics were used to analyze quantitative data, while open-ended comments were thematically reviewed to contextualize experiences and recommendations. Findings were presented to a patient advisory group to co-develop key recommendations for improving PSP design and delivery. Results Survey respondents represented diverse rheumatic diseases, including rheumatoid arthritis, psoriatic arthritis, and lupus, with the largest proportion aged 30-49 years. Over half of respondents (57%) received consent forms before PSP enrollment, yet only 60% fully understood the program’s role. Approximately two-thirds felt they received the necessary information about medication use, though 50% reported inadequate nursing support. Respondents emphasized the value of individualized education and consistent points of contact, noting frequent turnover among PSP staff as a barrier to trust and continuity. Key patient-identified recommendations included simplifying insurance systems, improving communication between PSPs and healthcare teams, ensuring informed consent, enhancing patient education, and developing independent monitoring of PSP effectiveness (Figure).[2] Conclusion This patient-led review demonstrates that while PSPs fill critical gaps in Canada’s healthcare system, improvements are needed to enhance equity, clarity, and patient-centeredness. People with arthritis and related diseases want programs that prioritize relationship-based care, clear information, and holistic support. Ongoing collaboration between patient organizations, PSP providers, and policymakers can improve these services and ensure they benefit patients in meaningful and impactful ways. References [1.] Grundy Q. CMAJ 2023;195:E1565-76. [2.] Canadian Arthritis Patient Alliance. https://arthritispatient.ca/en/patient-support-programs-survey-results/

Ce résumé expose les affirmations des auteurs. BNTIC ne l’interprète pas comme une validation indépendante des résultats.