Abstract

BackgroundAssessments of change in subjective patient reported outcomes such as health-related quality of life (HRQoL) are a key component of many clinical and research evaluations. However, conventional longitudinal evaluation of change may not agree with patient perceived change if patients' understanding of the subjective construct under evaluation changes over time (response shift) or if patients' have inaccurate recollection (recall bias). This study examined whether older adults' perception of change is in agreement with conventional longitudinal evaluation of change in their HRQoL over the duration of their hospital stay. It also investigated this level of agreement after adjusting patient perceived change for recall bias that patients may have experienced.MethodsA prospective longitudinal cohort design nested within a larger randomised controlled trial was implemented. 103 hospitalised older adults participated in this investigation at a tertiary hospital facility. The EQ-5D utility and Visual Analogue Scale (VAS) scores were used to evaluate HRQoL. Participants completed EQ-5D reports as soon as they were medically stable (within three days of admission) then again immediately prior to discharge. Three methods of change score calculation were used (conventional change, patient perceived change and patient perceived change adjusted for recall bias). Agreement was primarily investigated using intraclass correlation coefficients (ICC) and limits of agreement.ResultsOverall 101 (98%) participants completed both admission and discharge assessments. The mean (SD) age was 73.3 (11.2). The median (IQR) length of stay was 38 (20-60) days. For agreement between conventional longitudinal change and patient perceived change: ICCs were 0.34 and 0.40 for EQ-5D utility and VAS respectively. For agreement between conventional longitudinal change and patient perceived change adjusted for recall bias: ICCs were 0.98 and 0.90 respectively. Discrepancy between conventional longitudinal change and patient perceived change was considered clinically meaningful for 84 (83.2%) of participants, after adjusting for recall bias this reduced to 8 (7.9%).ConclusionsAgreement between conventional change and patient perceived change was not strong. A large proportion of this disagreement could be attributed to recall bias. To overcome the invalidating effect of response shift (on conventional change) and recall bias (on patient perceived change) a method of adjusting patient perceived change for recall bias has been described.

Highlights

  • Assessments of change in subjective patient reported outcomes such as health-related quality of life (HRQoL) are a key component of many clinical and research evaluations

  • The three potential change scores are represented by the following equations: Conventional change = follow up − baseline Patient perceived change = follow up − test Patient perceived change adjusted for recall bias = follow up − test + recall bias

  • This study aims to investigate agreement and systematic differences between conventional change and patient perceived change as well as between conventional change and patient perceived change adjusted for recall bias in health-related quality of life amongst a group of older patients accessing healthcare resources

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Summary

Introduction

Assessments of change in subjective patient reported outcomes such as health-related quality of life (HRQoL) are a key component of many clinical and research evaluations. Conventional measurement of change in the self-reported outcome involves subtracting the pre-treatment from the post-treatment assessment While this approach seems logical, a momentous confounding factor may exist. If through any number of mechanisms and internal processes, a patients' understanding or perception of the construct under evaluation changes over time comparison of two longitudinal assessments may be analogous to comparison of the proverbial apple and orange. This change in perception has been given the term 'response shift'[6,7,8,9]. The scenario presented below (Scenario 1) illustrates a change in perception that a patient may have experienced when reporting their health-related quality of life using a simple zero to ten scale

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