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Quality of Life Research
Published in: Quality of Life Research 5/2014

Open Access 01-06-2014

Domains of quality of life: results of a three-stage Delphi consensus procedure among patients, family of patients, clinicians, scientists and the general public

Authors: Suzanne Pietersma, Marieke de Vries, M. Elske van den Akker-van Marle

Published in: Quality of Life Research | Issue 5/2014

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Abstract

Purpose

Our key objective is to identify the core domains of health-related quality of life (QoL). Health-related QoL utility scales are commonly used in economic evaluations to assess the effectiveness of health-care interventions. However, health-care interventions are likely to affect QoL in a broader sense than is quantifiable with traditional scales. Therefore, measures need to go beyond these scales. Unfortunately, there is no consensus in the scientific literature on the essential domains of QoL.

Methods

We conducted a three-stage online Delphi consensus procedure to identify the key domains of health-related QoL. Five stakeholder groups (i.e., patients, family of patients, clinicians, scientists and general public) were asked, on three consecutive occasions, what they perceive as the most important domains of health-related QoL. An analysis of existing (health-related) QoL and well-being measurements formed the basis of the Delphi-procedure.

Results

In total, 42 domains of QoL were judged, covering physical, mental and social aspects. All participants rated ‘self-acceptance’, ‘self-esteem’ and ‘good social contacts’ as essential. Strikingly, mental and social domains are perceived as more essential than physical domains across stakeholders groups.

Conclusions

In traditionally used health-related QoL utility measures, physical domains like ‘mobility’ are prominently present. The Delphi-procedure shows that health-related QoL (utility) scales need to put sufficient emphasis on mental and social domains to capture aspects of QoL that are essential to people.
Footnotes
1
Before looked-up the original article, we applied additional selection criteria; we excluded scales if: (a) questionnaires did not include domains, but only overall QoL questions; (b) the reference article was not published in English; (c) no reference to a peer-reviewed article was present; (d) a more updated version of the scale was mentioned in the database; (e) questionnaires were published before 1990. The last criterion is applied because we wanted to exclude questionnaires that were developed in a time when the definition of (health-related) QoL was stricter. Although we can not objectively identify an absolute date, we believe that 1990 is a good cut-off point, because since this date the discussion of the definition of (health-related) QoL intensified [23].
 
2
We also analyzed how participants ranked the five most important domains. If they ranked a domain as number 1 it got the value 5, if it was ranked number 2 it got the value 4, if it was ranked 3 it got the value 3, if it was ranked 4 it got the value 2 and if it was ranked 5 it got the value 1 (i.e., the resulting scores are named weighted means). This way we interpret the distances between domain 1 and domain 2 to be equal to the distance between domain 2 and 3, and so on.
 
3
In Table 4 we also present the means for all domains to get additional input on the relative importance of all domains (e.g., what domain for which consensus is reached is seem as most important?). Mdn scores provide less differentiation [16].
 
4
The weighted means based on the participants’ ranking of the five most important domains resulted in a very similar list. It is just a bit more extensive; it includes also the domains: mental balance, feeling in control and enjoying the little things in life.
 
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Metadata
Title
Domains of quality of life: results of a three-stage Delphi consensus procedure among patients, family of patients, clinicians, scientists and the general public
Authors
Suzanne Pietersma
Marieke de Vries
M. Elske van den Akker-van Marle
Publication date
01-06-2014
Publisher
Springer International Publishing
Published in
Quality of Life Research / Issue 5/2014
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-013-0578-3

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