Literature DB >> 33387292

Discrepancies between proxy estimates and patient reported, health related, quality of life: minding the gap between patient and clinician perceptions in heart failure.

Roslyn A Prichard1, Fei-Li Zhao2, Julee Mcdonagh3, Stephen Goodall4, Patricia M Davidson5, Phillip J Newton6, Ben Farr-Wharton7, Christopher S Hayward3,8,9.   

Abstract

PURPOSE: Health related quality of life (HRQoL) is rarely routinely measured in the clinical setting. In the absence of patient reported data, clinicians rely on proxy and informal estimates to support clinical decisions. This study compares clinician estimates (proxy) with patient reported HRQoL in patients with advanced heart failure and examines factors influencing discrepancies.
METHODS: Seventy-five patients with heart failure, (22 females, 53 males) completed the EQ-5D-5L questionnaire. Thirty-nine clinicians (11 medical, 23 nursing, 5 allied health) completed the proxy version (V1) producing 194 dyads. Correlation was assessed using Spearman's rank tests, systematic bias was examined with Bland-Altman analyses. Inter-rater agreement at the domain level, was investigated using linear weighted Kappa statistics while factors influencing the IRG were explored using independent student t-tests, analysis of variance and regression.
RESULTS: There was a moderate positive correlation between clinician HRQoL estimates and patient reported utility (r = 0.38; p < .0005). Mean clinician estimates were higher than patient reported utility (0.60 vs 0.54; p = 0.008), with significant underestimation of reported problems apparent in three of the five EQ-5D-5L domains. Patient sex (female), depressed mood and frailty were all associated with an increased inter-rater gap.
CONCLUSION: Clinicians in this sample overestimated HRQoL. Factors affecting the inter-rater gap, including sex and depression, support formal HRQoL screening to enhance clinical conversations and decision making. The discrepancy also supports regulatory restriction on the use of expert opinion in the development of QALYs in health economic analysis.

Entities:  

Keywords:  Heart failure; Patient reported outcomes; Proxy; Quality of life; Sex difference

Mesh:

Year:  2021        PMID: 33387292     DOI: 10.1007/s11136-020-02722-z

Source DB:  PubMed          Journal:  Qual Life Res        ISSN: 0962-9343            Impact factor:   4.147


  34 in total

Review 1.  Proxy evaluation of health-related quality of life: a conceptual framework for understanding multiple proxy perspectives.

Authors:  A Simon Pickard; Sara J Knight
Journal:  Med Care       Date:  2005-05       Impact factor: 2.983

2.  Self and proxy rating of quality of life in adults with intellectual disabilities: results from the DISQOL study.

Authors:  Silke Schmidt; Mick Power; Ann Green; Ramona Lucas-Carrasco; Erhan Eser; Eva Dragomirecka; Marcello Fleck
Journal:  Res Dev Disabil       Date:  2010-05-15

3.  Patient reported outcome measures in practice.

Authors:  Eugene C Nelson; Elena Eftimovska; Cristin Lind; Andreas Hager; John H Wasson; Staffan Lindblad
Journal:  BMJ       Date:  2015-02-10

4.  Quality of life in heart failure: screening alone is insufficient.

Authors:  Casey E Cavanagh
Journal:  Eur Heart J Qual Care Clin Outcomes       Date:  2019-07-01

5.  EQ-5D in patients with dementia: an investigation of inter-rater agreement.

Authors:  W Coucill; S Bryan; P Bentham; A Buckley; A Laight
Journal:  Med Care       Date:  2001-08       Impact factor: 2.983

6.  Barriers and Benefits to the Use of Patient-Reported Outcome Measures in Routine Clinical Care: A Qualitative Study.

Authors:  Lindsey M Philpot; Sunni A Barnes; Rachel M Brown; Jessica A Austin; Cameron S James; Richard H Stanford; Jon O Ebbert
Journal:  Am J Med Qual       Date:  2017-12-19       Impact factor: 1.852

7.  A systematic review of randomised controlled trials evaluating the use of patient-reported outcome measures (PROMs).

Authors:  S Ishaque; J Karnon; G Chen; R Nair; A B Salter
Journal:  Qual Life Res       Date:  2018-10-03       Impact factor: 4.147

Review 8.  Proxy rated quality of life of care home residents with dementia: a systematic review.

Authors:  Sarah Robertson; Claudia Cooper; Juanita Hoe; Olivia Hamilton; Aisling Stringer; Gill Livingston
Journal:  Int Psychogeriatr       Date:  2017-01-16       Impact factor: 3.878

9.  The agreement between proxy and self-completed EQ-5D for care home residents was better for index scores than individual domains.

Authors:  Angela Devine; Stephanie J C Taylor; Anne Spencer; Karla Diaz-Ordaz; Sandra Eldridge; Martin Underwood
Journal:  J Clin Epidemiol       Date:  2014-05-15       Impact factor: 6.437

Review 10.  The facilitators and barriers to implementing patient reported outcome measures in organisations delivering health related services: a systematic review of reviews.

Authors:  Alexis Foster; Liz Croot; John Brazier; Janet Harris; Alicia O'Cathain
Journal:  J Patient Rep Outcomes       Date:  2018-10-03
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  2 in total

1.  Sex Equity in Heart Transplant Allocation: What Is Good for the Goose Is Good for the Gander.

Authors:  Selma Mohammed
Journal:  J Am Heart Assoc       Date:  2021-09-01       Impact factor: 6.106

2.  Agreement between older adult patient and caregiver proxy symptom reports.

Authors:  Kurt Kroenke; Timothy E Stump; Patrick O Monahan
Journal:  J Patient Rep Outcomes       Date:  2022-05-14
  2 in total

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