Do patients and carers agree on symptom burden in advanced COPD?
International journal of chronic obstructive pulmonary disease
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Mi, E., Mi, E., Ewing, G., White, P., Mahadeva, R., Gardener, A., & Farquhar, M. (2018). Do patients and carers agree on symptom burden in advanced COPD?. International journal of chronic obstructive pulmonary disease, 13 969-977. https://doi.org/10.2147/COPD.S147892
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.
Humans, Pulmonary Disease, Chronic Obstructive, Prognosis, Severity of Illness Index, Risk Factors, Prospective Studies, Cross-Sectional Studies, Adaptation, Psychological, Health Knowledge, Attitudes, Practice, Mental Health, Health Status, Cost of Illness, Quality of Life, Aged, Middle Aged, Caregivers, Patients, Female, Male
Marie Curie Cancer Care (MCCC-RP-12-A14129)
External DOI: https://doi.org/10.2147/COPD.S147892
This record's URL: https://www.repository.cam.ac.uk/handle/1810/291795
Attribution 4.0 International
Licence URL: https://creativecommons.org/licenses/by/4.0/