A Mixed Methods Study to Describe the Relationship between Burden of Illness, Social Needs, and Identity Experiences Among Patients with Multiple Myeloma

Abstract

Background Multiple Myeloma (MM) is a heterogenous hematologic malignancy where five-year survival has dramatically improved due to recent treatment advances. However, disparities exist for patient subgroups. Full assessment of social needs and identity experiences on MM disease burden is needed. The objective is to describe the relationship between burden of illness, social needs, and identity experiences within a diverse MM patient population. Methods A mixed methods design with a sequential approach was used to evaluate MM patients recruited through the Patient Engagement Research Council, a program that involves a diverse, nationally representative group of disease-aware patients living with chronic health conditions who provide insights and feedback around related care processes. The Accountable Health Communities survey was adapted and distributed to study participants to describe their sociodemographic characteristics and social needs. Patient profile characteristics were the basis for subsequent semi-structured focus group sessions. Transcripts and observation notes were analyzed using narrative thematic analysis to identify themes related to how social and identity experiences influenced MM disease burden. Results Of 25 participants with MM,21 completed the survey (age ≥65 years: 24%; female: 57%; race other than White: 52%). Patients reported the need to better understand medical information (n=7) and concerns about financial instability, including lack of full-time employment (n = 7). Diverse living situations were reported; almost half of participants had children living in the same household (n=10) and concern for housing instability was reported by 2 individuals. Nine participants had concerns about food insecurity and eight reported challenges related to transportation. When asked about mental health burdens, almost all (n=18) reported experiencing stress due to their health and 8 participants expressed loneliness and/or isolation ( Table 1). Twenty patients (age ≥60 years: 40%; female: 60%; race other than White: 60%) participated in 4 qualitative focus group sessions. Patients reported mental and physical health burdens related to living with MM. Ongoing anxiety, need for frequent monitoring to detect for progression, and lack of cure were among the most reported contributors to mental health burden. Significant fatigue and variation in side effects due to treatment changes were among the most reported contributors to physical health burden. Burden related to risk of progression, treatment side effects, financial issues, toll on physical/emotional health, and appointment frequency were reported as unique to MM compared to other chronic diseases (e.g., heart disease or diabetes). Most patients (n=13) reported ≥1 social experience which negatively impacted their health outcomes. Lack of health information on disease or treatment options due to myeloma disease complexity (n=10) and financial instability (n=5), including job instability and inability to change jobs, were the most reported barriers, followed by lack of insurance coverage (n=3), long appointment travel time (n=3), and lack of social support (n=3) such as lack of awareness of MM by others. Patients reported negative outcomes related to identity (n=9), including race/ethnicity (n=4), age (n=4), and culture (n=4). Patients perceived delayed or incorrect diagnosis due to cultural or age-related stereotypes. One patient reported receiving less attention than expected from her medical oncologist due to younger age. Another patient reported lack of family support to seek initial care because of her cultural background. Patients provided few examples where identity and social experiences interacted, ultimately affecting their disease. The interaction among age, disability status and financial instability was the most notable contributor leading to patients withdrawing from the workforce. Conclusions This study describes unique challenges perceived by patients with MM related to social and identity experiences which exacerbate disease burden and negatively impact treatment outcomes. How social and identity constructs intersect to impact patient experiences requires further investigation and quantification. Further insight will aid development of tailored implementation strategies to improve health inequities throughout the MM disease journey.