title: Patient versus proxy-reported problematic activities of daily life in patients with COPD.
abstract: 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.
authors.affiliation: Department of Research and Education, CIRO, Horn, The Netherlands.
authors.forename: Nienke
authors.initials: N
authors.lastname: Nakken
authors.affiliation: Department of Research and Education, CIRO, Horn, The Netherlands.|Centre of Expertise for Palliative Care, Maastricht University Medical Centre+ (MUMC+), Maastricht, The Netherlands.
authors.forename: Daisy J A
authors.initials: DJ
authors.lastname: Janssen
authors.affiliation: Department of Research and Education, CIRO, Horn, The Netherlands.
authors.forename: Esther H A
authors.initials: EH
authors.lastname: van den Bogaart
authors.affiliation: Department of Respiratory Medicine, Zuyderland, Heerlen, The Netherlands.
authors.forename: Monique
authors.initials: M
authors.lastname: van Vliet
authors.affiliation: Department of Respiratory Medicine, Zuyderland, Sittard-Geleen, The Netherlands.
authors.forename: Geeuwke J
authors.initials: GJ
authors.lastname: de Vries
authors.affiliation: Department of Respiratory Medicine, Zuyderland, Heerlen, The Netherlands.
authors.forename: Gerben P
authors.initials: GP
authors.lastname: Bootsma
authors.affiliation: Department of Respiratory Medicine, Zuyderland, Heerlen, The Netherlands.
authors.forename: Michiel H M
authors.initials: MH
authors.lastname: Gronenschild
authors.affiliation: Department of Research and Education, CIRO, Horn, The Netherlands.
authors.forename: Jeannet M L
authors.initials: JM
authors.lastname: Delbressine
authors.affiliation: Department of Family Medicine, CAPHRI School of Public Health and Primary Care, Maastricht University, Maastricht, The Netherlands.
authors.forename: Jean W M
authors.initials: JW
authors.lastname: Muris
authors.affiliation: Department of Research and Education, CIRO, Horn, The Netherlands.|Department of Respiratory Medicine, Maastricht University Medical Centre+ (MUMC+), Maastricht, The Netherlands.
authors.forename: Emiel F M
authors.initials: EF
authors.lastname: Wouters
authors.affiliation: Department of Research and Education, CIRO, Horn, The Netherlands.
authors.forename: Martijn A
authors.initials: MA
authors.lastname: Spruit
mesh_terms: D000203:Activities of Daily Living; D000368:Aged; D002170:Canada; D003430:Cross-Sectional Studies; D004185:Disability Evaluation; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D019727:Proxy; D029424:Pulmonary Disease, Chronic Obstructive / Q000175:diagnosis / Q000503:physiopathology / Q000523:psychology; D011788:Quality of Life; D057566:Self Report; D012720:Severity of Illness Index
keywords: activities of daily living; chronic obstructive pulmonary disease; family caregiver; occupational therapy; proxy