Background Older adults with multiple myeloma (MM) experience healthcare access barriers resulting from functional impairments, geographic access limits, and socioeconomic and sociocultural factors. Detailed qualitative data are required to fully understand the interrelated and complex drivers of disparate access to healthcare in this population. Informal caregivers are integral to qualitative inquiry, given their critical role in providing multidimensional social support to older adults with MM. However, research focused on dyadic (patient-informal caregiver) perspectives of barriers to accessing high-quality MM care is limited. We, therefore, examined these perspectives in a diverse cohort of older adult dyads. Methods From November 2021-April 2022, we recruited adults aged ≥ 55 diagnosed with MM, paired with a single informal caregiver, and receiving care at a Comprehensive Cancer Center. Patient participants were recruited during any phase of their disease and participated in a single semi-structured 60-90 minutes interview via videoconferencing. The interview guide explored topics about MM and MM-therapies, function, quality of life, and barriers to care. Interviews were transcribed verbatim, and Atlas ti software was used for data analysis. Data were analyzed using the Sort and Sift, Think, and Shift approach (Maietta et al., 2021), which allowed the research team to first "dive into" the data to understand its meaning using memos and diagrams and "step back" using the knowledge gained to guide the next steps. We stratified our dyadic transcripts based on participants' zip code of residence linked to an aggregate county-level measure of community social factors (Centers for Disease Control and Prevention's social vulnerability index). We applied the National Institute on Minority Health and Health Disparities framework to categorize multilevel factors driving barriers to healthcare access. Results We interviewed 42 (11 Black and 10 White dyads) of 44 enrolled participants [(mean age, patients: 70 years (range = 57-90), caregivers: 68 years (range = 37-88). Most (90%) caregivers were intimate partners. Thirty-eight percent of all participants had less than a college degree, and 26% had a median annual household outcome < $50,000. Thirty-seven percent of dyads resided in moderate or high social vulnerability communities. We identified the following healthcare access barriers, 1) accessibility and transportation, 2) financial, 3) delayed MM diagnoses, 4) delayed referrals to a hematology/oncology specialist, and 5) clinic appointment scheduling (Table 1). Dyads living in moderate or high social vulnerability communities often reported accessibility barriers (Figure 1). Secondly, dyads living in high social vulnerability communities often reported financial barriers. Regarding accessibility, most dyads reported challenges in accessing the Cancer Center due to lengthy travel times and costs associated with parking. For financial barriers, dyads expressed worries and uncertainty about their financial future. Limited patient and provider knowledge about MM, led to delays in making the diagnosis and subsequent referrals for specialist care. Scheduling barriers led to frustration with the timing and frequency of Cancer Center visits. Conclusion We identified several healthcare access barriers among dyads affected by MM. Residents of communities with high social vulnerability often reported accessibility and financial concerns. This finding supports a need for more targeted efforts to support better the needs of those considered most vulnerable. Multilevel interventions targeting individual, organizational, community, and policy are needed to address these barriers. Such interventions include enhanced community transportation assistance programs, access to financial navigators, and improved appointment scheduling (e.g., using an embedded geo distance calculator in the electronic medical record for estimating travel distance to the cancer center from a patient's residence). Furthermore, increased community outreach and education efforts are needed to enhance patient and non-specialty clinicians' knowledge of MM. In combination, these efforts could reduce the barriers that limit access to high-quality care for vulnerable populations. Figure 1View largeDownload PPTFigure 1View largeDownload PPT Close modal
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Jul 23, 2024
Emma Tian + 5
Open Access