Patient Perspectives on Industry Sponsored Patient Support Programs for Advanced Therapy in Rheumatology

Abstract

Objectives Industry sponsored rheumatology patient support programs (PSPs) for advanced therapies (ATs) are commonplace. While there is limited data to demonstrate their effectiveness in patient care, patient perspectives are even more lacking. This study aims to report patient views on PSPs. Methods In the first half of 2025, a survey on patient perceptions about PSPs was made available in the waiting room at 3 rheumatology centers in Edmonton, Alberta, while also electronically shared with those using ATs with access to a patient portal at 1 center. The survey asked patients about their experiences with PSPs, perceived value, and understanding of the programs. Results 580 individuals started the survey, with 63% completing it in its entirety. Respondents reported using 36 ATs (17 biosimilars); 43% were on their first AT and 23% had used 3+, with 66% having been on treatment for 4+ years. Only 43.1% knew they were enrolled in a PSP, while 27.4% were not sure. More than 45% of these respondents did not know the name of their PSP, 57% did not know the name of their PSP contact, and 60% did not know where their PSP was located. One-third of patients did not recall the last time they were contacted by their PSP, while another third indicated it was annually or less. At least 36% indicated they had experienced challenges with their PSP. 36.2% of respondents were not told or unsure if their rheumatologist told them they would be enrolled in a PSP, and 49% did not know PSPs were funded by pharmaceutical companies. Those with less education and rural living were more likely to be unaware of this funding model, while those with higher incomes were more likely to be aware. Over 50% were unsure or did not think it was right that PSPs are funded by pharmaceutical companies. Despite this, 73.3% of patients were generally satisfied with PSP support, with just under 80% felt there was at least some value to PSPs, and 63.3% felt it likely improved their overall treatment experience. Conclusion While it appears, most patients have some appreciation of PSPs, improved communication from healthcare providers and PSPs is likely necessary for patients to better understand basic information about their PSP, including how PSPs are funded. Further data about patients perceived program values and challenges would likely help to further improve the structure of these programs.