Patient-reported and proxy-reported outcome measures
for the assessment of health-related quality of life among
patients receiving enteral feeding: a systematic
review protocol
Ingeborg Simpelaere
1,2,3
Anne White
4
Geertruida E. Bekkering
5,6
Bart Geurden
5,6,7
Gwen Van Nuffelen
8,9
Marc De Bodt
8,9,10
1
Department Paramedical Professions, VIVES University College, Bruges, Belgium,
2
Department Speech-Language Pathology, AZ Delta, Menen,
Belgium,
3
University of Antwerp, Antwerp, Belgium,
4
Department of Experimental Psychology, KU Leuven, Leuven, Belgium,
5
Belgian Interuniversity
Collaboration for Evidence-based Practice (BICEP): an Affiliate Center of the Joanna Briggs Institute,
6
Belgian Center for Evidence-Based Medicine
(CEBAM): an Affiliate Center of the Joanna Briggs Institute,
7
Centre for Research and Innovation in Care (CRIC), University of Antwerp, Antwerp,
Belgium,
8
Department of Otolaryngology and Rehabilitation Centre for Communication Disorders, Antwerp University Hospital, Antwerp, Belgium,
9
Department of Translational Neurosciences, Faculty of Medicine and Health Sciences, University of Antwerp, Antwerp, Belgium, and
10
Department of Speech, Language and Hearing Sciences, Faculty of Medicine and Health Sciences, Ghent University, Ghent, Belgium
Review question/objective: The objective is to systematically review the psychometric properties and the clinical
utility of patient-reported outcome measures (PROMs) and proxy-reported outcome measures that assess health-
related quality of life (HRQoL) among patients receiving enteral feeding to make recommendations for use in clinical
practice and research. The purpose of this systematic review is to evaluate the psychometric properties and the
clinical utility of:
Measures to assess HRQoL among patients receiving enteral feeding, regardless the cause of receiving
enteral feeding.
Measures to assess HRQoL in the subgroup ‘‘patients receiving enteral feeding as a consequence of
dysphagia’’.
Measures (1 and 2) that are completed by patients’ proxy to assess HRQoL among patients receiving enteral
feeding.
The research question is: What are the psychometric properties and the clinical utility of these measures? We will
summarize evidence on the following properties: validity (content validity, criterion-related validity, construct
validity, floor and ceiling effects), reliability (reproducibility and internal consistency) and responsiveness and clinical
utility (interpretability and feasibility to complete the PROM and the proxy-reported outcome measure).
Keywords Enteral feeding; patient-reported outcome measures; quality of life; validity
Background
P
atient-reported outcome measures (PROMs)
can be used to assess patients’ health-related
quality of life (HRQoL) from the patients’ perspect-
ive.
1
The Food and Drug Administration of the US
Department of Health and Human Services defines
PROMs as ‘‘any report of the status of a patient’s
health condition that comes directly from the
patient, without interpretation of the patient’s
response by a clinician or anyone else’’.
2(p.2)
There-
fore, PROMs can be used to measure patients’ own
perceptions of their health status,
1,3
HRQoL
1,3
and
individual treatment effects.
4
However, self-report-
ing can be problematic or impossible for some
patients.
5
In these situations, proxy-reported out-
come measures may be used for the assessment of the
patient’s HRQoL as the proxies can provide relevant
information about how they think the patient would
report on his or her HRQoL. Patient-reported and
proxy-reported outcome measures are also used in
Correspondence: Ingeborg Simpelaere,
ingeborg.simpelaere@vives.be
There are no conflicts of interest in this project.
DOI: 10.11124/JBISRIR-2016-002982
JBI Database of Systematic Reviews and Implementation Reports ß 2016 THE JOANNA BRIGGS INSTITUTE 45
SYSTEMATIC REVIEW PROTOCOL
©2016 Joanna Briggs Institute. Unauthorized reproduction of this article is prohibited.