Do patients and carers agree on symptom burden in advanced COPD?

Mi, Emma, Mi, Ella, Ewing, Gail, White, Patrick, Mahadeva, Ravi, Gardener, A. Carole and Farquhar, Morag ORCID: (2018) Do patients and carers agree on symptom burden in advanced COPD? International Journal of Chronic Obstructive Pulmonary Disease, 2018 (13). 969—977. ISSN 1178-2005

[thumbnail of Published manuscript]
PDF (Published manuscript) - Published Version
Available under License Creative Commons Attribution.

Download (500kB) | Preview


Objective: Accurate informal carer assessment of patient symptoms is likely to be valuable for decision-making in managing the high symptom burden of chronic obstructive pulmonary disease (COPD) in the home setting. Few studies have investigated agreement between patients and carers in COPD. We aimed to assess agreement between patients and carers on symptoms, and factors associated with disagreement in a population-based sample of patients with advanced COPD. Methods: A prospective, cross-sectional analysis of data from 119 advanced COPD patients and their carers. Patients and carers separately rated symptoms on a 4-point scale. Wilcoxon signed-rank tests and weighted Cohen’s kappa determined differences in patient and carer scores and patient-carer agreement, respectively. We identified characteristics associated with incongruence using Spearman’s rank correlation and Mann-Whitney U tests. Results: There were no significant differences between group level patient and carer scores for any symptom. Patient-carer individual level agreement was moderate for constipation (k=0.423), just below moderate for diarrhoea (k=0.393), and fair for depression (k=0.341), fatigue (k=0.294), anxiety (k=0.289), and breathlessness (k=0.210). Estimation of greater patient symptom burden by carers relative to patients themselves was associated with non-spousal patient-carer relationship, noncohabitating patients and carers, carer symptoms of anxiety and depression, and more carer unmet support needs. Greater symptom burden estimation by the patient relative to the carer was associated with younger patients and longer duration of COPD. Conclusion: Overall, agreement between patients and carers was fair to moderate and was poorer for more subjective symptoms. There is a need to encourage open dialogue between patients and carers to promote shared understanding, help patients express themselves, and encourage carers to draw attention to symptoms that patients do not report. The findings suggest a need to screen for and address both the psychological morbidities in patients with advanced COPD and their carers and unmet support needs in carers

Item Type: Article
Uncontrolled Keywords: copd,informal carers,symptom,agreement,sdg 3 - good health and well-being ,/dk/atira/pure/sustainabledevelopmentgoals/good_health_and_well_being
Faculty \ School: Faculty of Medicine and Health Sciences > School of Health Sciences
UEA Research Groups: Faculty of Medicine and Health Sciences > Research Groups > Health Promotion
Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health
Depositing User: Pure Connector
Date Deposited: 31 Jan 2018 12:30
Last Modified: 19 Oct 2023 02:08
DOI: 10.2147/COPD.S147892


Downloads per month over past year

Actions (login required)

View Item View Item