Chen Jill, Shaw Joanne M, Dhillon Haryana M, Halkett Georgia K B, McDougall Emma, Nowak Anna K, Campbell Rachel
Psycho-Oncology Cooperative Research Group, School of Psychology, Faculty of Science, The University of Sydney, Camperdown, NSW, 2006, Australia.
Curtin School of Nursing/Curtin Health Innovation Research Institute, Faculty of Health Sciences, Curtin University, Bentley, WA, 6102, Australia.
J Patient Rep Outcomes. 2025 Jan 10;9(1):6. doi: 10.1186/s41687-024-00835-4.
Informal caregivers of people with high grade glioma (HGG) often have high levels of unmet support needs. Routine screening for unmet needs can facilitate appropriate and timely access to supportive care. We aimed to develop a brief screening tool for HGG caregiver unmet needs, based on the Supportive Care Needs Survey-Partners & Caregivers (SCNS-P&C).
Secondary analysis was performed on responses to the SCNS-P&C from 188 HGG caregivers, who participated in the Care-IS trial. SCNS-P&C items were assessed against four criteria: factor loadings; prevalence; variation in domain score; diagnostic accuracy. Supplementary analysis was conducted at two timepoints (T1 & T2) on the final selected items to identify caregivers indicating no needs on the screening items but reported a need on the original SCNS-P&C, suggesting they would be "missed" by the screening items.
Six items performed best against psychometric criteria, capturing two domains: Cancer impact needs and Information and communication needs. Supplementary analysis showed screening items failed to identify only 7.4% (14/188) of caregivers with other unmet needs at T1 and 11.4% (18/158) at T2. Of those missed at T1, only four were missed again at T2.
We identified six-items for inclusion in a brief screening tool, the SCNS-P&C-6, demonstrating good sensitivity in detecting unmet needs of caregivers of people with HGG. Use of this tool in clinical practice has the potential to improve access to care and the cancer experience for both the caregiver and person with brain tumor.
高级别胶质瘤（HGG）患者的非正式照护者往往有大量未得到满足的支持需求。对未满足需求进行常规筛查有助于及时获得适当的支持性护理。我们旨在基于支持性护理需求调查-伴侣与照护者（SCNS-P&C）开发一种用于筛查HGG照护者未满足需求的简短工具。
对参与Care-IS试验的188名HGG照护者对SCNS-P&C的回答进行二次分析。根据四个标准评估SCNS-P&C项目：因子负荷；患病率；领域得分变化；诊断准确性。在两个时间点（T1和T2）对最终选定的项目进行补充分析，以确定在筛查项目上表示无需求但在原始SCNS-P&C上报告有需求的照护者，这表明他们会被筛查项目“遗漏”。
六个项目在心理测量标准方面表现最佳，涵盖两个领域：癌症影响需求和信息与沟通需求。补充分析表明，筛查项目在T1时仅未能识别出7.4%（14/188）有其他未满足需求的照护者，在T2时为11.4%（18/158）。在T1时被遗漏的照护者中，只有四人在T2时再次被遗漏。
我们确定了六个项目纳入简短筛查工具SCNS-P&C-6，该工具在检测HGG患者照护者未满足需求方面具有良好的敏感性。在临床实践中使用该工具有可能改善照护者和脑肿瘤患者获得护理的机会以及癌症体验。
