Buchanan Ashley, Sarfo Astrid, Rangel Maria Lizette, Nangia Julie, Badr Hoda
Department of Psychology & Neuroscience, Baylor University, Waco, Texas, USA.
David Geffen School of Medicine, University of California Los Angeles, Los Angeles, California, USA.
Psychooncology. 2023 Oct;32(10):1578-1585. doi: 10.1002/pon.6209. Epub 2023 Sep 12.
Oncology guidelines for distress management recommend use of the single-item distress thermometer (DT) and accompanying Problem List (PL) to identify patients with high distress levels and their potential sources of distress. However, oncology practices have yet to establish standardized protocols to screen and triage caregivers with high distress levels. With an eye toward integrating caregiver-centered support services into cancer care, this mixed-methods study sought to assess caregiver distress and challenges that may contribute to their distress.
Nineteen caregivers of metastatic breast cancer patients (60% female, 47% ethnic/racial minority) completed an interview and a survey comprised of the DT, the original 39-item PL, and five additional caregiver-specific PL items.
Caregivers reported moderate distress levels and more than half exceeded the National Comprehensive Cancer Network (NCCN) cut-off, denoting significant distress. There was no association between caregiver distress and the number of items endorsed on the original PL. Qualitative analysis identified nine problem domains as areas of caregiver unmet need needs (i.e., practical challenges, caregiving responsibilities, social/relationship issues, caregiver and patient emotional well-being, caregiver and patient physical well-being, spiritual well-being, and communication). Two of the problem domains (caregiving responsibilities and communication) were not captured in any way by the original PL.
With further research and development, the identified domains could serve as the basis for a caregiver-specific PL to facilitate triage and referral when incorporated as part of routine distress screening.
肿瘤学痛苦管理指南建议使用单项痛苦温度计（DT）及配套的问题清单（PL）来识别痛苦程度高的患者及其潜在的痛苦来源。然而，肿瘤学实践尚未建立标准化方案来筛查和分诊痛苦程度高的照护者。着眼于将以照护者为中心的支持服务纳入癌症护理，这项混合方法研究旨在评估照护者的痛苦以及可能导致其痛苦的挑战。
19名转移性乳腺癌患者的照护者（60%为女性，47%为少数族裔）完成了一项访谈以及一项包含DT、最初的39项PL和另外5项针对照护者的PL项目的调查。
照护者报告的痛苦程度为中度，超过一半的人超过了美国国立综合癌症网络（NCCN）的临界值，表明存在显著痛苦。照护者的痛苦与最初PL上认可的项目数量之间没有关联。定性分析确定了九个问题领域是照护者未满足的需求领域（即实际挑战、照护责任、社会/关系问题、照护者和患者的情绪健康、照护者和患者的身体健康、精神健康以及沟通）。最初的PL完全没有涵盖其中两个问题领域（照护责任和沟通）。
通过进一步的研究和开发，所确定的领域可作为针对照护者的PL的基础，在作为常规痛苦筛查的一部分纳入时，有助于分诊和转诊。
