Unmet Needs and Health-Related Quality of Life Among Patients With Relapsed/Refractory Indolent Non-Hodgkin Lymphoma: A Mixed-Methods Study.

Abstract

Objective: Patients with relapsed or refractory (r/r) indolent non-Hodgkin lymphoma (iNHL) live with incurable disease for a long-term, experiencing multiple relapses and treatments that impair their health-related quality of life (HRQOL). We aimed to better understand the unmet needs and HRQOL of patients with r/r iNHL.

Methods: This convergent mixed-methods study evaluated patients with r/r iNHL who received treatment. Unmet needs and HRQOL were assessed quantitatively using self-administered questionnaires and analyzed statistically. Qualitative data were collected through face-to-face semi-structured interviews for reflexive thematic analysis. Quantitative and qualitative findings were integrated through narrative discussion and joint display.

Results: Questionnaire respondents (50 participants, mean age: 72.42 years) reported unmet needs in the health system and information and psychological domains and a negative association between unmet needs and HRQOL. Interviews (20 participants, mean age: 72.75 years) identified four themes: "unremarkable symptoms," "anxiety of progression in the near future," "make the best of life," and "means to live with uncertainty." Integration revealed that participants accepted their low HRQOL and attempted to make the best of life, influencing their perception of unmet needs.

Conclusions: Throughout the long course of r/r and repeated treatment, patients with iNHL accepted their low HRQOL, valued their current situations, and endeavored to make the best of life. In this situation, support in the psychological and health system and information domains is crucial. Support for the unmet needs of patients with r/r iNHL is essential as they strive to live their best lives while maintaining a favorable HRQOL.