Unité de Recherche en Psychosomatique et Psycho-oncologie, Faculté des Sciences Psychologiques et de l'Éducation, Université Libre de Bruxelles, Brussels, Belgium; Clinique de Psycho-Oncologie, Institut Jules Bordet, Université Libre de Bruxelles, Brussels, Belgium.
Psychooncology. 2013 Dec;22(12):2840-7. doi: 10.1002/pon.3362. Epub 2013 Aug 29.
In cancer care, informal primary caregivers provide healthcare professionals with key information regarding patient difficulties. The aim of this study was to assess their ability to report cancer patients' physical, psychological, and social difficulties.
We recruited 208 consecutive patients and their informal primary caregivers in 10 oncology units. Patients reported their difficulties on the CAncer Rehabilitation Evaluation System (CARES-P), whereas caregivers reported their perception of patient difficulties on an adapted CARES questionnaire (CARES-C). On the basis of CARES-P and CARES-C questionnaire answers, correct report rates were defined by the percentage of difficulties reported at least 'a little' by patients and by caregivers. False report rates were defined by the percentage of difficulties not reported at least 'a little' by patients and reported by caregivers. Patients and their caregivers also provided their distress levels (Hospital Anxiety and Depression Scale) and coping strategies.
Caregivers correctly reported 67% of physical, 69% of psychological, and 40% of social difficulties experienced in patients. Caregivers falsely reported 28% of physical, 37% of psychological, and 22% of social difficulties not experienced by patients. Significant correlations were found between all correct and false reported rates. Patient and caregiver characteristics were weakly associated with caregivers' correct and false reports.
Family primary caregivers correctly reported approximately two thirds of physical and psychological patients' difficulties; however, they had less accurate reports of patients' social difficulties. Correct report rates increased the probability of false report rates. Healthcare professionals should carefully evaluate the accuracy of a primary informal caregiver's report in regards to patient experiences.
在癌症护理中，非正式的主要照顾者为医疗保健专业人员提供有关患者困难的关键信息。本研究的目的是评估他们报告癌症患者身体、心理和社会困难的能力。
我们在 10 个肿瘤病房招募了 208 名连续的患者及其非正式主要照顾者。患者使用癌症康复评估系统（CARES-P）报告他们的困难，而照顾者使用经过改编的 CARES 问卷（CARES-C）报告他们对患者困难的看法。根据 CARES-P 和 CARES-C 问卷的答案，正确报告率定义为患者至少报告“有点”困难的百分比和照顾者报告的百分比。错误报告率定义为患者未报告至少“有点”困难但照顾者报告的百分比。患者及其照顾者还提供了他们的焦虑和抑郁水平（医院焦虑和抑郁量表）和应对策略。
照顾者正确报告了患者经历的 67%的身体、69%的心理和 40%的社会困难。照顾者错误报告了患者未经历的 28%的身体、37%的心理和 22%的社会困难。所有正确和错误报告率之间存在显著相关性。患者和照顾者的特征与照顾者的正确和错误报告之间存在弱相关性。
家庭主要照顾者正确报告了患者大约三分之二的身体和心理困难，但他们对患者的社会困难报告准确性较低。正确报告率增加了错误报告率的可能性。医疗保健专业人员应仔细评估主要非正式照顾者对患者经历的报告的准确性。
