Sugimoto Miki, Yagasaki Kaori, Matsuki Eri, Shimizu Takayuki, Sakurai Masatoshi, Kataoka Keisuke, Doorenbos Ardith Z
Graduate School of Health Management, Keio University, Tokyo, Japan.
Faculty of Nursing and Medical care, Keio University, Tokyo, Japan.
Psychooncology. 2025 Feb;34(2):e70103. doi: 10.1002/pon.70103.
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.
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.
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.
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.
复发或难治性（r/r）惰性非霍奇金淋巴瘤（iNHL）患者长期患有无法治愈的疾病，经历多次复发和治疗，这损害了他们的健康相关生活质量（HRQOL）。我们旨在更好地了解r/r iNHL患者未满足的需求和HRQOL。
这项收敛性混合方法研究评估了接受治疗的r/r iNHL患者。使用自填式问卷对未满足的需求和HRQOL进行定量评估，并进行统计分析。通过面对面的半结构化访谈收集定性数据，进行反思性主题分析。通过叙述性讨论和联合展示将定量和定性研究结果整合起来。
问卷受访者（50名参与者，平均年龄：72.42岁）报告了在医疗系统、信息和心理领域存在未满足的需求，且未满足的需求与HRQOL之间存在负相关。访谈（20名参与者，平均年龄：72.75岁）确定了四个主题：“症状不明显”、“近期病情进展的焦虑”、“充分利用生活”和“在不确定性中生活的方式”。整合结果显示，参与者接受了较低的HRQOL，并试图充分利用生活，这影响了他们对未满足需求的认知。
在r/r和反复治疗的漫长过程中，iNHL患者接受了较低的HRQOL，珍视他们目前的状况，并努力充分利用生活。在这种情况下，心理、医疗系统和信息领域的支持至关重要。支持r/r iNHL患者满足未满足的需求至关重要，因为他们在努力过上最好生活的同时，还要维持良好的HRQOL。
