Patient versus proxy‐reported problematic activities of daily life in patients with COPD

Abstract

Background and objective 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. Methods 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. Results 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. Conclusion 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.

Year in review 2017: Chronic obstructive pulmonary disease and asthma

“…Although the majority of proxies were spouses or partners of the patients, they were unable to accurately identify the most problematic activities that patients reported. Agreement was moderate for problems with showering/bathing, and only fair for walking, stair climbing and dressing/undressing …”

“…The proposed BOSA index is calculated using a 10-point scale based on body mass index, airflow obstruction (forced expiratory volume in 1 s (FEV 1 ) % predicted), St George's Respiratory Questionnaire and age. 50 Finally, Nakken et al 51 evaluated the agreement between surrogate and patient reports of problems with activities of daily living. Although the majority of proxies were spouses or partners of the patients, they were unable to accurately identify the most problematic activities that patients reported.…”

“…Agreement was moderate for problems with showering/bathing, and only fair for walking, stair climbing and dressing/ undressing. 51 ASTHMA Keiko Kan-o and Judith C.W. Mak…”

Gender differences in partners of patients with COPD and their perceptions about the patients

“…This study is approved by the Medical Research Ethics Committees United, the Netherlands (NL42721.060.12/M12-1280), and is registered in the Dutch Trial Register (NTR3941). The protocol of this study and data about health status and problematic activities of daily life were published before 17–19…”

Identifying causes of perceptual differences in problematic activities of daily life between patients with COPD and proxies: A qualitative study

“…Proxies are often unable to accurately identify the most important problematic ADLs of patients with COPD (Nakken et al ., ). Moreover, when patient and proxy agree about a specific problematic ADL, the perception of the performance and the satisfaction with that ADL performance differs within most pairs (Nakken et al . ).…”