Nakken Nienke, Janssen Daisy J A, van den Bogaart Esther H A, van Vliet Monique, de Vries Geeuwke J, Bootsma Gerben P, Gronenschild Michiel H M, Delbressine Jeannet M L, Muris Jean W M, Wouters Emiel F M, Spruit Martijn A
Department of Research and Education, CIRO, Horn, The Netherlands.
Centre of Expertise for Palliative Care, Maastricht University Medical Centre+ (MUMC+), Maastricht, The Netherlands.
Respirology. 2017 Feb;22(2):307-314. doi: 10.1111/resp.12915. Epub 2016 Oct 12.
Loved ones (proxies) of patients with COPD are confronted with the patients' limitations in activities of daily living (ADLs). However, it remains unknown whether proxies are able to correctly estimate the problematic ADLs of the patient. Therefore, we aimed to investigate the level of agreement between patient-reported and proxy-reported problematic ADLs of the patient.
Stable outpatients with moderate to very severe COPD (n = 194) and their resident proxies (n = 194) were included in this cross-sectional study. Patients' problematic ADLs were assessed in the domains 'self-care', 'mobility', 'productivity' and 'leisure' using the Canadian Occupational Performance Measure (COPM) in both patients and resident proxies. Furthermore, the perceived performance and satisfaction for important problematic ADLs were rated on a 10-point scale.
In total, 830 problematic ADLs were reported by patients, and 735 by proxies. Agreement in reporting problematic ADLs within a domain was poor (productivity and leisure; κ; = 0.20 and 0.16, respectively) to fair (self-care and mobility; κ = 0.32 and 0.22, respectively). Similar performance and satisfaction scores, for equally reported problematic ADLs, were given by 24.0% and 17.6% of the pairs, respectively.
Proxies were often not able to identify the patients' most important problematic ADLs. Moreover, when patient and proxy agreed about the presence of a specific problematic ADL, the perception of the performance and the satisfaction with that performance differed within most pairs. This emphasizes the importance of involving proxies, besides patients alone, in identifying patients' problematic ADLs.
慢性阻塞性肺疾病（COPD）患者的亲人（代理人）面临着患者日常生活活动（ADL）方面的限制。然而，代理人是否能够正确估计患者存在问题的ADL仍不清楚。因此，我们旨在调查患者报告的和代理人报告的患者存在问题的ADL之间的一致程度。
本横断面研究纳入了194例中度至非常严重COPD的稳定门诊患者及其常住代理人（194例）。使用加拿大职业表现测量量表（COPM）在患者和常住代理人中评估患者在“自我护理”“活动能力”“生产效率”和“休闲”领域存在问题的ADL。此外，对重要的存在问题的ADL的感知表现和满意度进行10分制评分。
患者共报告了830项存在问题的ADL，代理人报告了735项。在一个领域内报告存在问题的ADL的一致性较差（生产效率和休闲领域；κ分别为0.20和0.16）至中等（自我护理和活动能力领域；κ分别为0.32和0.22）。对于同样报告存在问题的ADL，分别有24.0%和17.6%的配对给出了相似的表现和满意度评分。
代理人往往无法识别患者最重要的存在问题的ADL。此外，当患者和代理人就特定存在问题的ADL达成一致时，大多数配对中对该表现的感知和对该表现的满意度存在差异。这强调了除患者本人外，让代理人参与识别患者存在问题的ADL的重要性。
