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Health and Quality of Life Outcomes
Published in: Health and Quality of Life Outcomes 1/2019

Open Access 01-12-2019 | Care | Review

A systematic review of dimensions evaluating patient experience in chronic illness

Authors: Bastien Forestier, Emmanuelle Anthoine, Ziad Reguiai, Cécile Fohrer, Myriam Blanchin

Published in: Health and Quality of Life Outcomes | Issue 1/2019

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Abstract

Background

Living with a chronic disease often means experiencing chronic treatments and regular multidisciplinary monitoring as well as a profound life-changing experience which may impact all aspects of a patients life. The patient experience of chronic disease is frequently assessed by patient reported measures (PRMs) which incorporate patients perspectives to better understand how illness, treatment and care impact the entirety of a patient’s life. The purpose of this review was to collect and review different kinds of available PRM instruments validated for chronic patients, to produce an inventory of explored concepts in these questionnaires and to identify and classify all dimensions assessing chronic patients experience.

Methods

A systematic review of PRM instruments validated for chronic patients was conducted from three databases (Medline, the Cochrane library, and Psycinfo). Articles were selected after a double reading and questionnaires were classified according to their targeted concept. Then, all dimensions of the questionnaires were clustered into different categories.

Results

107 primary validation studies of PRM questionnaires were selected. Five kinds of instruments were recorded: 1) Questionnaires assessing health related quality of life or quality of life; 2) Instruments focusing on symptoms and functional status; 3) Instruments exploring patients’ feelings and attitude about illness; 4) Questionnaires related to patients’ experience of treatment or healthcare; 5) Instruments assessing patients attitudes about treatment or healthcare. Twelve categories of dimensions were obtained from these instruments.

Conclusions

This review provided an overview of some of the dimensions used to explore chronic patient experience. A large PRM diversity exists and none of the reviewed and selected questionnaires covered all identified categories of dimensions of patient experience of chronic disease. Furthermore, the definition of explored concepts varies widely among researchers and complex concepts often lack a clear definition in the reviewed articles. Before attempting to measure chronic patient experience, researchers should construct appropriate instruments focusing on well-defined concepts and dimensions encompassing patient’s personal experience, attitude and adaptation to illness, treatment or healthcare.
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Metadata
Title
A systematic review of dimensions evaluating patient experience in chronic illness
Authors
Bastien Forestier
Emmanuelle Anthoine
Ziad Reguiai
Cécile Fohrer
Myriam Blanchin
Publication date
01-12-2019
Publisher
BioMed Central
Keyword
Care
Published in
Health and Quality of Life Outcomes / Issue 1/2019
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/s12955-019-1084-2

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