Lambert Sylvie, Audet Li-Anne, Ould Brahim Lydia, Schaffler Jamie, Garcia Ramirez Cecilia, Frati Francesca, Sangha Sonya, Howard A Fuchsia, Lambert Leah
Ingram School of Nursing, McGill University, Montreal, QC, Canada.
St. Mary's Research Centre, Montreal, QC, Canada.
Cancer Control. 2025 Jan-Dec;32:10732748251339217. doi: 10.1177/10732748251339217. Epub 2025 Jun 19.
Caregivers experience physical, psychological, emotional, and practical challenges resulting from their roles and responsibilities. These challenges negatively impact caregivers' health and well-being. Screening for patient-reported outcomes (PROs) is now considered a cornerstone of chronic disease management to improve symptom identification and management, quality of life, and survival. Similarly, screening for family-reported outcomes (FROs) could help promote caregivers' health and well-being. Though family-reported outcome measure (FROM) screening programs have emerged, the nature and extent of their development and evaluation in the context of chronic disease remains unknown. This scoping review aimed to identify the extent to which FROM screening programs among caregivers of adults with a chronic disease have been developed and evaluated. PRISMA-ScR and the methods recommended by the Joanna Briggs Institute were followed. Four electronic databases (Ovid- Medline(R), Ovid- Classic + Embase, Ovid-APA PsycInfo 1967-onwards, CINAHL Plus with Full Text, and ProQuest Dissertations and Theses) were searched iteratively to identify published literature describing FROM screening programs. Secondary search strategies and a search of grey literature were also undertaken. Data were extracted using a standardized table and analyzed using descriptive statistics and qualitative content analysis. A total of 38 studies describing 17 unique FROM programs were evaluated. Studies were published between 1999-2024 and primarily from Australia (n = 11), the United States (n = 8), and the United Kingdom (n = 6). Caregivers included (n = 4312) were most commonly spouses of patients with cancer. Screening was primarily used to tailor interventions (rather than monitor symptoms) and focused on caregivers' needs (e.g., information, managing patient symptoms). Nurses typically responded to the screening. Most programs offered three types of follow-up: informational/educational resources, referrals to specialists or community groups, and/or real-time discussion and feedback with the interventionist. Although the FROM programs positively impacted proximal variables (e.g., preparedness), this did not translate to more distal outcomes (e.g., quality of life, anxiety). Future research on the timing of screening, caregiver engagement, and efficacious follow-up interventions is needed.
照顾者因其角色和职责而面临身体、心理、情感和实际方面的挑战。这些挑战对照顾者的健康和幸福产生负面影响。筛查患者报告的结局（PROs）现在被视为慢性病管理的基石，以改善症状识别与管理、生活质量和生存率。同样，筛查家庭报告的结局（FROs）有助于促进照顾者的健康和幸福。尽管已经出现了家庭报告结局测量（FROM）筛查项目，但在慢性病背景下其发展和评估的性质与程度仍不明确。本范围综述旨在确定在患有慢性病的成年人的照顾者中，FROM筛查项目的发展和评估程度。遵循PRISMA-ScR和乔安娜·布里格斯研究所推荐的方法。对四个电子数据库（Ovid- Medline(R)、Ovid- Classic + Embase、Ovid-APA PsycInfo 1967年起、CINAHL Plus with Full Text以及ProQuest学位论文）进行迭代搜索，以确定描述FROM筛查项目的已发表文献。还采用了二次搜索策略并搜索了灰色文献。使用标准化表格提取数据，并采用描述性统计和定性内容分析进行分析。共评估了38项描述17个独特FROM项目的研究。研究发表于1999年至2024年之间，主要来自澳大利亚（n = 11）、美国（n = 8）和英国（n = 6）。纳入的照顾者（n = 4312）最常见的是癌症患者的配偶。筛查主要用于调整干预措施（而非监测症状），并关注照顾者的需求（如信息、管理患者症状）。护士通常对筛查做出回应。大多数项目提供三种类型的随访：信息/教育资源、转介给专科医生或社区团体，和/或与干预者进行实时讨论和反馈。尽管FROM项目对近端变量（如准备情况）产生了积极影响，但这并未转化为更长远的结果（如生活质量、焦虑）。未来需要对筛查时机、照顾者参与度和有效的随访干预措施进行研究。
