Nienke Nakken1, Daisy J A Janssen1,2, Esther H A van den Bogaart1, Monique van Vliet3, Geeuwke J de Vries4, Gerben P Bootsma3, Michiel H M Gronenschild3, Jeannet M L Delbressine1, Jean W M Muris5, Emiel F M Wouters1,6, Martijn A Spruit1. 1. Department of Research and Education, CIRO, Horn, The Netherlands. 2. Centre of Expertise for Palliative Care, Maastricht University Medical Centre+ (MUMC+), Maastricht, The Netherlands. 3. Department of Respiratory Medicine, Zuyderland, Heerlen, The Netherlands. 4. Department of Respiratory Medicine, Zuyderland, Sittard-Geleen, The Netherlands. 5. Department of Family Medicine, CAPHRI School of Public Health and Primary Care, Maastricht University, Maastricht, The Netherlands. 6. Department of Respiratory Medicine, Maastricht University Medical Centre+ (MUMC+), Maastricht, The Netherlands.
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.
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.
Authors: Nienke Nakken; Daisy Ja Janssen; Monique van Vliet; Geeuwke J de Vries; Giny Al Clappers-Gielen; Arent Jan Michels; Jean Wm Muris; Jan H Vercoulen; Emiel Fm Wouters; Martijn A Spruit Journal: Int J Chron Obstruct Pulmon Dis Date: 2016-12-23
Authors: Nienke Nakken; Daisy J A Janssen; Esther H A van den Bogaart; Jean W M Muris; Jan H Vercoulen; Frank L Custers; Gerben P Bootsma; Michiel H M Gronenschild; Emiel F M Wouters; Martijn A Spruit Journal: BMC Pulm Med Date: 2017-10-30 Impact factor: 3.317
Authors: Frits M E Franssen; Dionne E Smid; Dorly J H Deeg; Martijn Huisman; Jan Poppelaars; Emiel F M Wouters; Martijn A Spruit Journal: NPJ Prim Care Respir Med Date: 2018-08-10 Impact factor: 2.871
Authors: Nicole H M K Uszko-Lencer; Daisy J A Janssen; Swetlana Gaffron; Lowie E G W Vanfleteren; Eefje Janssen; Christ Werter; Frits M E Franssen; Emiel F M Wouters; Simon Rechberger; Hans-Peter Brunner La Rocca; Martijn A Spruit Journal: ESC Heart Fail Date: 2021-11-18