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

International Journal of COPD Dovepress open access to scientific and medical research Original Research International Journal of Chronic Obstructive Pulmonary Disease downloaded from https://www.dovepress.com/ by 37.59.46.207 on 13-Jul-2018 For personal use only. Open Access Full Text Article Do patients and carers agree on symptom burden in advanced COPD? This article was published in the following Dove Press journal: International Journal of COPD Emma Mi 1 Ella Mi 1 Gail Ewing 2 Patrick White 3 Ravi Mahadeva 4 A Carole Gardener 5 Morag Farquhar 6 On behalf of the Living with Breathlessness Study Team School of Clinical Medicine, 2Centre for Family Research, University of Cambridge, Cambridge, 3Primary Care and Public Health Sciences, King’s College London, London, 4 Department 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 1 Plain language summary Correspondence: Morag Farquhar School of Health Sciences, University of East Anglia, Norwich Research Park, Norwich NR4 7TJ, UK Tel +44 0 160 359 7649 Email Patients with COPD are affected by many symptoms such as breathlessness and tiredness in their day-to-day life. Family and friends (informal carers) often have to help manage these symptoms and decide when to get medical help. We wanted to find out whether patients and their carers agree in their judgments of the patient’s symptoms and what factors are associated with better or worse agreement as this may influence how well symptoms are managed, given the carer’s role in this. One hundred and nineteen patients and their carers separately rated how much the patient was bothered by six common symptoms in COPD. Agreement between patients and carers was worse for less obvious symptoms such as depression, fatigue, anxiety and breathlessness than constipation and diarrhea. Carers who said that their patient had more problematic symptoms than the patients themselves tended to have a non-spousal relationship with and live apart from their patient, be symptomatically anxious or depressed themselves and have more 969 submit your manuscript | www.dovepress.com International Journal of COPD 2018:13 969–977 Dovepress © 2018 Mi et al. This work is published by Dove Medical Press Limited, and licensed under a Creative Commons Attribution License. The full terms of the License are available at http://creativecommons.org/licenses/by/4.0/. The license permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. http://dx.doi.org/10.2147/COPD.S147892 Powered by TCPDF (www.tcpdf.org) 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 Dovepress International Journal of Chronic Obstructive Pulmonary Disease downloaded from https://www.dovepress.com/ by 37.59.46.207 on 13-Jul-2018 For personal use only. Mi et al unmet support needs. Patients reporting a greater symptom burden than their carer reported for them were younger and had COPD for longer. Our results suggest clinicians should seek opinions about symptoms from both the patient and their carer, promote shared understanding between patients and carers, and screen for mental health problems in both and unmet support needs in carers. Introduction COPD carries a high symptom burden, including psychological impacts such as anxiety and depression. Accurate symptom assessment by informal carers, typically family and friends, is likely to be important for their own decision making in supporting symptom management in the home setting and in deciding when to seek medical help.6,7 Inaccurate assessment may negatively impact on the quality of the patient–carer relationship and the psychological health of both, and may lead to overtreatment or inadequate symptom control.1,6,8–10 The extent of agreement between patients and carers is debated. There is widespread consensus in cancer that, at the group patient and carer cohort level, carers consistently overestimate patient symptoms,2–6,8,9,11–16 although the magnitude of the bias is small.2,11,13,17 At the individual patient–carer dyad level, strength of agreement on symptoms ranges from fair to substantial.2,4,11,12,14–19 It is well established in cancer populations that there is greater agreement between patients and carers for more observable symptoms (typically physical symptoms) compared to less observable symptoms (typically psychological symptoms).3–5,8,13,15 Group-level carer bias toward over-reporting is small for physical symptoms but moderate for psychological symptoms, with overestimation primarily for fatigue, pain, anxiety and depression.1,5,11,13 Individual-level agreement is substantial on physical symptoms compared to only fair on (...truncated)