Response to written feedback of clinical data within a longitudinal study: a qualitative study exploring the ethical implications

Lorimer, K., Gray, C.M. , Hunt, K., Wyke, S. , Anderson, A.S. and Benzeval, M. (2011) Response to written feedback of clinical data within a longitudinal study: a qualitative study exploring the ethical implications. BMC Medical Research Methodology, 11(10), (doi: 10.1186/1471-2288-11-10)

Abstract

Background There is a growing ethical imperative to feedback research results to participants but there remains a striking lack of empirical research on how people respond to individualised feedback. We sought to explore longitudinal study participants’ response to receiving individual written feedback of weight-related and blood results, and to consider the balance of harms against benefits. Methods A qualitative study with face-to-face and telephone interviews conducted with 50 men and women who had participated in the fifth and most recent wave of the cohort study ‘West of Scotland Twenty-07’ and received a feedback letter containing body mass index (BMI), body fat percentage, cholesterol and glycated haemoglobin A1c (HbA1c) results. Results Expectations of, and response to, the feedback of their individual results varied. Whilst half of the participants were on the whole ‘pleased’ with their results or held neutral views, half reported negative responses such as ‘shock’ or ‘concern’, particularly in relation to the weight-related results. Participants who were overweight and obese used the most negative language about their results, with some being quite distressed and reporting feelings of powerlessness, low self-image and anxiety over future health. Nevertheless, some people reported having implemented lifestyle changes in direct response to the feedback, resulting in significant weight loss and/or dietary improvements. Others reported being motivated to change their behaviour. Age and gender differences were apparent in these narratives of behaviour change. Conclusions The potential harm caused to some participants may be balanced against the benefit to others. More evaluation of the impact of the format, content and means of individualised feedback of research findings in non-trial studies is required given the growing ethical imperative to offer participants a choice of receiving their results, and the likelihood that a high percentage will choose to receive them.

• Item Type: Articles
• Status: Published
• Refereed: Yes
• Glasgow Author(s) Enlighten ID: Wyke, Professor Sally and Gray, Professor Cindy and Hunt, Professor Kathryn and Benzeval, Dr Michaela
• Authors: Lorimer, K., Gray, C.M., Hunt, K., Wyke, S., Anderson, A.S., and Benzeval, M.
• Subjects: R Medicine > RZ Other systems of medicine
• College/School: College of Medical Veterinary and Life Sciences > School of Health & Wellbeing > Social Scientists working in Health and Wellbeing; College of Medical Veterinary and Life Sciences > School of Health & Wellbeing > MRC/CSO SPHSU; College of Social Sciences
• Journal Name: BMC Medical Research Methodology
• Publisher: BioMed Central
• ISSN: 1471-2288
• Copyright Holders: Copyright © 2011 BioMed Central
• First Published: First published in BMC Medical Research Methodology 11(10)
• Publisher Policy: Reproduced in accordance with the copyright policy of the publisher

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