+1 Recommend
1 collections
      • Record: found
      • Abstract: found
      • Article: found
      Is Open Access

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

      Read this article at

          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.



          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.


          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.


          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.

          Related collections

          Most cited references 30

          • Record: found
          • Abstract: found
          • Article: not found

          Psychometric comparison of PHQ-9 and HADS for measuring depression severity in primary care.

          The 2004 National Institute for Health and Clinical Excellence (NICE) guidelines highlight the importance of assessing severity of depression in primary care. To assess the psychometric properties of the Patient Health Questionnaire (PHQ-9) and the depression subscale of the Hospital Anxiety and Depression Scale (HADS-D) for measuring depression severity in primary care. Psychometric assessment. Thirty-two general practices in Grampian, Scotland. Consecutive patients referred to a primary care mental health worker completed the PHQ-9 and HADS at baseline (n = 1063) and at the end of treatment (n = 544). Data were analysed to assess reliability, robustness of factor structure, convergent/discriminant validity, convergence of severity banding, and responsiveness to change. Both scales demonstrated high internal consistency at baseline and end of treatment (PHQ-9 alpha = 0.83 and 0.92; HADS-D alpha = 0.84 and 0.89). One factor emerged each for the PHQ-9 (explaining 42% of variance) and HADS-D (explaining 52% of variance). Both scales converged more with each other than with the HADS anxiety (HADS-A) subscale at baseline (P<0.001) and at end of treatment (P = 0.01). Responsiveness to change was similar: effect size for PHQ-9 = 0.99 and for the HADS-D = 1. The HADS-D and PHQ-9 differed significantly in categorising severity of depression, with the PHQ-9 categorising a greater proportion of patients with moderate/severe depression (P<0.001). The HADS-D and PHQ-9 demonstrated reliability, convergent/discriminant validity, and responsiveness to change. However, they differed considerably in how they catergorised severity. Given that treatment decisions are made on the basis of severity, further work is needed to assess the validity of the scales' severity cut-off bands.
            • Record: found
            • Abstract: found
            • Article: not found

            The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease.

            Health-related quality of life (HRQL) studies sometimes rely, in part, on proxy information obtained from patients' significant others (spouse or close companion) or health care providers. This review: (1) provides a quantitative analysis of the results that have been reported in recent studies assessing the level of agreement between patient and proxy HRQL ratings, and (2) addresses a number of key methodological issues surrounding the use of proxy raters in HRQL research. This review concentrates on 23 studies, published between 1991-2000, that describe patient-proxy agreement for a number of well-known multidimensional HRQL instruments. In general, moderate to high levels of patient-proxy agreement were reported. Lower levels of agreement were found predominantly in studies employing a small sample size (approximately 50 patient-proxy pairs or less). In larger studies comparing patients and their significant others, median correlations were between 0.60-0.70 for physical HRQL domains and about 0.50 for psychosocial domains. Mixed results were reported in studies comparing patients and their health care providers, but most of these studies employed a relatively small sample size. Proxy raters tended to report more HRQL problems than patients themselves, but the magnitude of observed differences was modest (median standardized differences of about 0.20). Based on the current evidence, we conclude that judgements made by significant others and health care providers about several aspects of patients' HRQL are reasonably accurate. Substantial discrepancies between patient and proxy ratings occur in a minority of cases. We recommend that future studies focus on: (a) the reliability and validity of proxy ratings according to common psychometric methods, and (b) the balance between information bias due to proxy ratings and potential selection bias due to exclusion of important patient subgroups from HRQL studies.
              • Record: found
              • Abstract: found
              • Article: not found

              The Carer Support Needs Assessment Tool (CSNAT) for use in palliative and end-of-life care at home: a validation study.

              Family carers need to be supported in their central role of caring for patients at the end of life, but brief practical tools to assess their support needs have been missing. To address this gap, we developed a brief evidence-based Carer Support Needs Assessment Tool (CSNAT) suitable for everyday practice.

                Author and article information

                Int J Chron Obstruct Pulmon Dis
                Int J Chron Obstruct Pulmon Dis
                International Journal of COPD
                International Journal of Chronic Obstructive Pulmonary Disease
                Dove Medical Press
                22 March 2018
                : 13
                : 969-977
                [1 ]School of Clinical Medicine
                [2 ]Centre for Family Research, University of Cambridge, Cambridge
                [3 ]Primary Care and Public Health Sciences, King’s College London, London
                [4 ]Department of Respiratory Medicine, Cambridge NIHR BRC, Addenbrookes Hospital
                [5 ]Department of Public Health and Primary Care, University of Cambridge, Cambridge
                [6 ]School of Health Sciences, University of East Anglia, Norwich, UK
                Author notes
                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 m.farquhar@
                © 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 The license permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                Original Research

                Respiratory medicine

                agreement, copd, symptom, informal carers


                Comment on this article