Centre of Functioning & Health Research, Metro South Health, Brisbane, Queensland, Australia.
Division of Speech Pathology, School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Queensland, Australia.
J Med Radiat Sci. 2021 Jun;68(2):139-148. doi: 10.1002/jmrs.448. Epub 2020 Nov 10.
Research has shown that electronic platforms can assist data capture of patient-reported outcome measures (PROMs) to guide clinical care. In comparison, routine collection of carer-reported outcome measures (CROMs) to support the patient-carer dyad during cancer treatment has had limited attention. The current study utilised a novel electronic CROM (eCROM) system, ScreenIT Carer, to monitor the prevalence and nature of distress in carers of patients undergoing (chemo)radiotherapy ((C)RT) for head/neck cancer (HNC), and explore factors associated with carer distress.
Carers completed ScreenIT Carer weekly when attending patients' (C)RT treatment sessions from planning to 2 weeks post-treatment. ScreenIT Carer included the Distress Thermometer (DT) and Problem List, and a purpose-built Mealtime-Specific DT and Problem list. Data were first examined descriptively, then associations between demographic/treatment-related factors and distress severity were analysed using mixed-effects general linear modelling.
135 carers provided 434 ScreenIT Carer entries during the study period (mean entries = three/carer; yielding average adherence rate of 41% (range 11-100%)). A high prevalence of general (59%) and mealtime-specific distress (46%) was reported by carers. Nature of distress was multifactorial, with emotional problems and the patients' physical condition/symptoms common contributing factors. Based on multivariate analysis, tumour site, geographical location of residence and time during (C)RT when ScreenIT Carer was completed were significant predictors of carer distress severity.
Carer distress is prevalent and multifactorial during (C)RT. This study highlights the feasibility of utilising eCROM platforms such as ScreenIT Carer, to monitor carer wellbeing and guide supportive care services as part of a holistic care pathway.
研究表明，电子平台可以辅助患者报告结局测量（PROMs）的数据采集，以指导临床护理。相比之下，常规收集照顾者报告结局测量（CROMs）来支持癌症治疗期间的患者-照顾者对，关注有限。本研究利用一种新型电子 CROM（eCROM）系统 ScreenIT Carer，监测接受头颈部癌症（HNC）放化疗（C）RT 的患者的照顾者的困扰发生率和性质，并探讨与照顾者困扰相关的因素。
照顾者在患者接受（C）RT 治疗期间，每周在就诊时完成 ScreenIT Carer。ScreenIT Carer 包括了“痛苦温度计（DT）”和“问题清单”，以及一个特制的“用餐时间特定 DT 和问题清单”。数据首先进行描述性分析，然后使用混合效应广义线性模型分析人口统计学/治疗相关因素与痛苦严重程度之间的关联。
在研究期间，有 135 名照顾者提供了 434 次 ScreenIT Carer 条目（每名照顾者平均 3 次条目，平均依从率为 41%（范围为 11-100%））。照顾者报告了高发生率的一般（59%）和特定用餐时间的困扰（46%）。困扰的性质是多因素的，情绪问题和患者的身体状况/症状是常见的影响因素。基于多变量分析，肿瘤部位、居住地理位置和在（C）RT 期间完成 ScreenIT Carer 的时间是照顾者痛苦严重程度的显著预测因素。
在（C）RT 期间，照顾者的困扰是普遍存在且多因素的。本研究强调了利用 eCROM 平台（如 ScreenIT Carer）监测照顾者的健康状况并指导支持性护理服务的可行性，作为整体护理途径的一部分。
