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Open Access 13-04-2025 | Acute Lymphoblastic Leukemia | Original Research
Understanding Patients’ Experiences in Newly Diagnosed Adult B Cell Acute Lymphoblastic Leukemia: Qualitative Interviews to Develop a Patient-Centric Conceptual Model
Authors: Michael Chladek, Maria Virginia Meza, Jessie Wang, Maria Sae-Hau, Ana Buenfil, James Turnbull, Faraz Zaman, Nicolas Despiegel
Published in: Oncology and Therapy
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Introduction
Treatment outcomes for older adults with B cell acute lymphoblastic leukemia (B cell ALL) are poor, partially because of poor tolerance to intense chemotherapy. Information on patient experience—an important consideration in drug development—is lacking. We investigated the signs, symptoms, and impacts of B cell ALL on older patients (or those with comorbidities that may reduce chemotherapy tolerance).
Methods
This observational study involved teleconference-based, qualitative, semi-structured interviews with patients newly diagnosed with B cell ALL, aged ≥ 55 years, or 30–54 years with ≥ 1 comorbidity. Participants described their B cell ALL experience, including signs, symptoms, and impacts, and how bothersome/disturbing these were from 0 (not at all) to 10 (greatly) at three timepoints (around diagnosis, at worst, and at interview). Salient signs/symptoms were those reported by ≥ 40%, with average disturbance ratings of ≥ 4. A conceptual model of key disease- and treatment-related signs, symptoms, and impacts was developed.
Results
Interviews with 20 participants (mean age 57.9 years; 80% diagnosed within 18 months) revealed 63 signs/symptoms and 37 impacts. All reported fatigue-related symptoms, and most reported gastrointestinal (n = 18, 90%), central/peripheral nervous system (n = 16, 80%), and pain-, respiratory-, blood-, and mouth-related (all n = 14, 70%) symptoms. Eight signs/symptoms were salient around diagnosis (fatigue, tiredness, weakness, exhaustion, shortness of breath, sweating, general pain, and diarrhea) and 16 were salient “at worst”; four remained salient at interview (all fatigue-related). All participants reported emotional impacts, and most reported physical and social impacts (both n = 16, 80%). The most frequent impact was inability to do previous hobbies/activities (n = 15, 75%), followed by decreased ability for activities of daily living and worry/fear/nervousness (both n = 12, 60%).
Conclusion
This study provides insight into patients’ experience with newly diagnosed B cell ALL among older patients or those with clinically significant comorbidities. This enhances understanding of what matters most to patients and informs future treatment development and clinical care.
