Do patients and carers agree on symptom burden in advanced COPD?
Received 31 July 2017
Accepted for publication 16 January 2018
Published 22 March 2018 Volume 2018:13 Pages 969—977
Checked for plagiarism Yes
Review by Single-blind
Peer reviewers approved by Professor Hsiao-Chi Chuang
Peer reviewer comments 2
Editor who approved publication: Dr Richard Russell
Emma Mi,1 Ella Mi,1 Gail Ewing,2 Patrick White,3 Ravi Mahadeva,4 A Carole Gardener,5 Morag Farquhar6
On behalf of the Living with Breathlessness Study Team
1School of Clinical Medicine, 2Centre for Family Research, University of Cambridge, Cambridge, 3Primary Care and Public Health Sciences, King’s College London, London, 4Department of Respiratory Medicine, Cambridge NIHR BRC, Addenbrookes Hospital, 5Department of Public Health and Primary Care, University of Cambridge, Cambridge, 6School of Health Sciences, University of East Anglia, Norwich, UK
Objective: Accurate informal carer assessment of patient symptoms is likely to be valuable for decision making in managing the high symptom burden of 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.
Patients and methods: This was 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 diarrhea (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, non-cohabitating 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.
Keywords: COPD, informal carers, symptom, agreement
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