Background Lupus disproportionately affects Black/African American (AA) and Latino/a patients, yet these underrepresented racial/ethnic minority populations often face challenges with accessing quality care.1,2 We aimed to explore patients’ and physicians’ perceptions on the treatment journey for underrepresented patients and identify barriers to quality care.
Methods In-depth qualitative interviews were conducted with patients with lupus from underrepresented populations (Black/AA, Latino/a, Native American, Asian/Pacific Islander) and physicians (dermatology or rheumatology). Quota sampling was used to recruit patients from racially and ethnically diverse backgrounds and physicians with varied medical practices. Patient and physician participants provided informed consent. Semi-structured interviews explored patients’ experiences with the healthcare system and physicians’ challenges when treating patients with lupus.
Results Interviews were conducted with 33 patients and 20 physicians. Age, region, education, employment status, and type/severity of lupus varied among patients, as did physicians’ work experience and practice settings (table 1). Patients reported challenges at each step of their journey. Prior to diagnosis, patients entered the healthcare system often lacking awareness of lupus disease and reported feeling initially ignored, dismissed, or misdiagnosed, which delayed treatment and triggered mistrust of the healthcare system. Lack of trust was cited by patients as a reason to discontinue treatment, despite persistent symptoms. Some patients reported perceived challenges with access to branded medications due to insurance coverage or delays in prior authorization and were concerned about losing their job and insurance. Patients communicated that treatment access might be improved by establishing support systems for reliable disease information (advocacy groups, community support), increasing cultural sensitivity in physician practices, and enabling an efficient and transparent treatment initiation process. From the physician perspective, barriers to treatment access included delayed diagnoses, patient concerns over side effects and the need for lifelong treatment, communication challenges with patients with limited English proficiency (LEP), and medication costs. Physicians suggested addressing perceived barriers by providing better patient information resources, having a live translator present during visits for patients with LEP, and navigating accessibility to medications through patient assistance programs to ensure access to branded therapies when needed.
Conclusions Improving access to quality care for underrepresented patients is essential to reduce health disparities across racial/ethnic groups and build trust in the healthcare system. Increasing disease awareness among these diverse groups and physicians, establishing patient support networks, and improving patient-physician communication should be critical components of health equity efforts.
Arora. Rheum Dis Clin N Am. 2020;46:623-638.
Maningding. Arthritis Care Res. 2020;72(5):622-629.
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