Leo Karena, Porter Laura S, Lisenbee Jodie, Ramos Katherine
Department of Psychiatry & Behavioral Sciences, Duke University School of Medicine, Durham, NC, USA.
Department of Psychiatry, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
Palliat Support Care. 2025 Jul 18;23:e136. doi: 10.1017/S1478951525100436.
The aim of this article is to develop and pilot test a new supportive care intervention, Empower GBM, designed for patients with glioblastoma and their family caregivers to reduce psychological distress and improve quality of life.
Qualitative interviews were conducted with patients diagnosed with glioblastoma and their caregivers to obtain information about their experiences and needs in coping with glioblastoma. We also gathered their feedback about the supportive care intervention we were proposing (Phase I). Following Phase I, we conducted a single-arm pilot to evaluate the feasibility and acceptability of the 6-session intervention (Phase II).
During interviews ( = 14), patients and caregivers reported having the most difficulty and distress surrounding disease progression and management, maintaining dignity and autonomy, negotiation of roles and responsibilities, and maintaining connection with one another. Participants endorsed that an intervention like Empower GBM with skills focused on managing symptoms to increase independence, increasing caregiving efficacy and support, and coping with dyadic challenges would be of potential benefit. Preliminary results from the pilot study ( = 11) suggested the intervention is both feasible (e.g., 82% completed all 6 sessions and post-treatment surveys) and acceptable (88.9% reported a mean satisfaction score of 3 or higher; mean score of 3.57/4.0). Improvements in psychological outcomes, functional well-being, and caregiving efficacy from pre- to post-treatment survey results suggested the potential benefits of the intervention.
We developed a novel supportive care intervention informed by the dyadic illness model that is designed to meet the individual and interpersonal needs of patients with glioblastoma and their caregivers. Unique features include its flexibility to be delivered to patients and/or their family caregivers individually or jointly, while providing skills and strategies to meet the needs of both individuals and the dyad as the unit of care in coping with glioblastoma.
本文旨在开发并进行一项新的支持性护理干预措施——“增强型胶质母细胞瘤支持项目”（Empower GBM）的试点测试，该措施专为胶质母细胞瘤患者及其家庭护理人员设计，以减轻心理困扰并提高生活质量。
对被诊断为胶质母细胞瘤的患者及其护理人员进行定性访谈，以获取他们在应对胶质母细胞瘤方面的经历和需求信息。我们还收集了他们对我们提议的支持性护理干预措施（第一阶段）的反馈。在第一阶段之后，我们进行了一项单组试点研究，以评估这个为期6节课程的干预措施的可行性和可接受性（第二阶段）。
在访谈期间（n = 14），患者和护理人员报告称，在疾病进展与管理、维护尊严和自主性、协商角色与责任以及彼此保持联系方面存在最大的困难和困扰。参与者认可像“增强型胶质母细胞瘤支持项目”这样的干预措施，其技能聚焦于管理症状以增强独立性、提高护理效能与支持，以及应对二元挑战，可能会带来益处。试点研究的初步结果（n = 11）表明该干预措施既可行（例如，82%的人完成了所有6节课程以及治疗后调查）又可接受（88.9%的人报告平均满意度得分在3分或更高；平均得分为3.57/4.0）。治疗前到治疗后的调查结果显示，心理结果、功能幸福感和护理效能有所改善，表明该干预措施具有潜在益处。
我们基于二元疾病模型开发了一种新型的支持性护理干预措施，旨在满足胶质母细胞瘤患者及其护理人员的个体和人际需求。其独特之处包括灵活性，既可以单独也可以联合为患者和/或其家庭护理人员提供服务，同时提供技能和策略，以满足个体以及作为护理单位的二元组合在应对胶质母细胞瘤时的需求。
