Johnson & Johnson Horsham, Pennsylvania, United States
Background/Case Studies: wAIHA is a rare autoantibody disease characterized by premature destruction of red blood cells, resulting in anemia, which can cause a range of physical signs and symptoms, including extreme fatigue and shortness of breath. This thematic analysis of qualitative insights from patients living with wAIHA highlights the physical and emotional burden of disease and impact of current treatment on QoL.
Study
Design/Methods: Five wAIHA Global Patient Council Advisory Board touchpoints (of an ongoing series) occurred from 1/2022–3/2024. Meeting transcripts were reviewed manually to identify themes, annotated in MS Word, then uploaded to MAXQDA for analysis.
Results/Findings: Participants (n=9; 7 US/1 Netherlands/1 Hungary; 7 White/1 African American/1 Hispanic; 4 female/5 male) were in their 30s–60s. Four patients were receiving no current treatment; 3 were currently receiving prednisone ± rituximab, 1 belimumab, and 1 azathioprine; 4 had prior splenectomy. Key themes identified were an unclear treatment pathway and diminished QoL.
Patients feel that wAIHA treatment involves a lot of trial and error, and that the risk-benefit calculations for treatment options are daunting, especially if patients are experiencing symptoms (Table 1). Treatment response is highly variable; most patients prefer non-steroid options, and splenectomy may not offer relief. Patients often feel unprepared for the unpredictable, chronic nature of wAIHA and treatment side effects that patients feel are minimized by HCPs.
Daily lives of patients with wAIHA are severely impacted by disease and treatment side effects. Patients feel “paranoid” about potential symptoms/their impact and fear experiencing relapse. Patients expressed that fatigue, and also needing multiple specialist and blood test/transfusion appointments, affects productivity; some need a reduced workload or switch jobs/are fired. Effects are physical (eg, inability to resume prior activities due to fatigue; loss of muscle mass, weight gain and “moonface” with steroids), psychological (eg, body is fighting itself and disease is waiting to re-emerge, leading to depression/anxiety/panic attacks), and financial (no treatments are specifically approved for wAIHA and therefore some prescribed therapies are not covered by health benefits), and place immense strain on their relationships. Social support is highly valued, but many patients feel a lack of empathy and lose friends due to limited understanding of wAIHA and an outwardly healthy appearance (“you’re always tired”; “you look fine”).
Conclusions: Patients with wAIHA expressed needs for clear expectations of disease prognosis and treatment efficacy/tolerability; they report substantial challenges (physical, psychological, and financial) with wAIHA and its treatment, and value social support.
