Living with a chronic hematological malignancy: Perspectives on PRO-based management of symptoms

Purpose: To explore study participants’ experiences with chronic hematologic malignancies and their perspectives on symptom management based on patient-reported outcomes during follow-up care. Methods: This qualitative descriptive study used semi-structured telephone interviews conducted from May 2022 to February 2023. A purposeful sample was recruited, with participants invited consecutively. Participants were adults ≥18 years diagnosed with a chronic hematological malignancy and participating in a symptom management intervention. Reflexive thematic analysis, as described by Braun and Clarke, was used to perform an inductive analysis of the interview data. Results: A total of 19 telephone interviews were conducted with 17 participants. Participants had nuanced perspectives on managing life with a chronic and uncommon hematological malignancy reflected in the following themes: not allowing the disease to dominate, struggling to understand and manage the disease, navigating everyday life with the disease, and evaluating impact and tailoring of patient reported outcome-based symptom management. Conclusion: This study emphasizes the ambiguity of living with a chronic hematological malignancy. Participants strive to prevent the disease from dominating their lives, despite their struggles to understand and manage the disease. The use of patient-reported outcomes in dialogue and targeted symptom management helped participants navigate daily life challenges. These findings underscore important considerations for enhancing follow-up care for patients with chronic hematological malignancies.