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

Emma Mi, Ella Mi, Gail Ewing, Patrick White, Ravi Mahadeva, A. Carole Gardener, Morag Farquhar

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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
Original languageEnglish
Pages (from-to)969—977
Number of pages9
JournalInternational Journal of Chronic Obstructive Pulmonary Disease
Issue number13
Publication statusPublished - 22 Mar 2018


  • COPD
  • informal carers
  • symptom
  • agreement

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