Navigating the Roadblocks: National Patient and Provider Survey on Barriers to Healthcare and Medication Access for Patients with Vasculitis.

Abstract

OBJECTIVE Timely diagnosis, specialized care, and medication access are critical for managing vasculitis. This study quantified barriers to care reported by patients and healthcare providers (HCPs). METHODS Two primarily quantitative surveys were disseminated from September 2022 to June 2023 to 100 patients with vasculitis and 31 HCPs, through the Vasculitis Foundation Canada and the Canadian Rheumatology Association. This study was a secondary descriptive analysis of the data to analyze patient and HCP perspectives on diagnostic delays, appointment access, and medication challenges. RESULTS Diagnostic delays were common, with 66% of patients reporting initial 'misdiagnoses', and 36% consulting ≥5 doctors before receiving a diagnosis of vasculitis. Among those referred to rheumatology, 57% waited >1 month for an appointment. HCPs cited a lack of family physicians (74%), long waitlists (58%), and inappropriate referrals (48%) as major barriers. Forty-four percent of patients reported challenges associated with medication use, particularly related to adverse effects, out-of-pocket costs, and limited insurance coverage. Eighty-three percent of patients reported hospital visits at least once for vasculitis-related symptoms, most commonly due to disease flare. Ninety-three percent of HCPs reported facing medication access barriers, including challenges associated with prior authorizations and step therapy protocols, with rituximab most frequently cited as difficult to access. CONCLUSION This study identified substantial barriers to vasculitis care, including diagnostic delays and limited access to medications. Targeted interventions, such as improving referral pathways, expanding provider availability, and reducing administrative burdens, are essential to improving access for this vulnerable population.