Development and validation of a new patient-reported outcome measure for patients with pressure ulcers: the PU-QOL instrument

Claudia Gorecki; Julia M. Brown; Stefan Cano; Donna L. Lamping; Michelle Briggs; Susanne Coleman; Carol Dealey; Elizabeth McGinnis; Andrea E. Nelson; Nikki Stubbs; Lyn Wilson; Jane Nixon

doi:10.1186/1477-7525-11-95

Development and validation of a new patient-reported outcome measure for patients with pressure ulcers: the PU-QOL instrument

Claudia Gorecki^*, Julia M. Brown, Stefan Cano, Donna L. Lamping, Michelle Briggs, Susanne Coleman, Carol Dealey, Elizabeth McGinnis, Andrea E. Nelson, Nikki Stubbs, Lyn Wilson, Jane Nixon

^*Corresponding author for this work

PVC Research

Research output: Contribution to journal › Article › peer-review

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Abstract

Background: Patient-reported outcome (PRO) data are integral to patient care, policy decision making and healthcare delivery. PRO assessment in pressure ulcers is in its infancy, with few studies including PROs as study outcomes. Further, there are no pressure ulcer PRO instruments available.

Methods: We used gold-standard methods to develop and evaluate a new PRO instrument for people with pressure ulcers (the PU-QOL instrument). Firstly a conceptual framework was developed forming the basis of PU-QOL scales. Next an exhaustive item pool was used to produce a draft instrument that was pretested using mixed methods (cognitive interviews and Rasch Measurement Theory). Finally, we undertook psychometric evaluation in two parts. This first part was item reduction, using PU-QOL data from 227 patients. The second part was reliability and validity evaluation of the item-reduced version using both Traditional and Rasch methods, on PU-QOL data from 229 patients.

Results: The final PU-QOL contains 10 scales for measuring symptoms, physical functioning, psychological well-being and social participation specific to pressure ulcers. It is intended for administration and patients rate the amount of “bother” attributed during the past week on a 3-point response scale. Scale scores are generated by summing items, with lower scores indicating better outcome. The PU-QOL instrument was found to be acceptable, reliable (Cronbach’s alpha values ranging 0.89 - 0.97) and valid (hypothesised correlations between PU-QOL and SF-12 scores (r >0.30) and PU-QOL scales and sociodemographic variables (r <0.30) were consistent with predictions).

Conclusions: The PU-QOL instrument provides a standardised method for assessing PROs, reflecting the domains in a pressure ulcer-specific conceptual framework. It is intended for evaluating patient orientated differences between interventions and in particular the impact from the perspective of patients.

Original language	English
Article number	95
Number of pages	12
Journal	Health and Quality of Life Outcomes
Volume	11
DOIs	https://doi.org/10.1186/1477-7525-11-95
Publication status	Published - 13 Jun 2013

Keywords

pressure ulcer
patient-reported outcomes
health-related quality of life
reliability
validity
rasch analysis
rating scale

ASJC Scopus subject areas

Public Health, Environmental and Occupational Health

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1186/1477-7525-11-95

Gorecki, C. et al (2013) Development and validation of a new patient-reported outcome measure for patients with pressure ulcers: the PU-QOL instrument
© 2013 Gorecki et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Final published version, 456 KBLicence: CC BY

Cite this

Gorecki, C., Brown, J. M., Cano, S., Lamping, D. L., Briggs, M., Coleman, S., Dealey, C., McGinnis, E., Nelson, A. E., Stubbs, N., Wilson, L., & Nixon, J. (2013). Development and validation of a new patient-reported outcome measure for patients with pressure ulcers: the PU-QOL instrument. Health and Quality of Life Outcomes, 11, Article 95. https://doi.org/10.1186/1477-7525-11-95

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title = "Development and validation of a new patient-reported outcome measure for patients with pressure ulcers: the PU-QOL instrument",

abstract = "Background: Patient-reported outcome (PRO) data are integral to patient care, policy decision making and healthcare delivery. PRO assessment in pressure ulcers is in its infancy, with few studies including PROs as study outcomes. Further, there are no pressure ulcer PRO instruments available. Methods: We used gold-standard methods to develop and evaluate a new PRO instrument for people with pressure ulcers (the PU-QOL instrument). Firstly a conceptual framework was developed forming the basis of PU-QOL scales. Next an exhaustive item pool was used to produce a draft instrument that was pretested using mixed methods (cognitive interviews and Rasch Measurement Theory). Finally, we undertook psychometric evaluation in two parts. This first part was item reduction, using PU-QOL data from 227 patients. The second part was reliability and validity evaluation of the item-reduced version using both Traditional and Rasch methods, on PU-QOL data from 229 patients. Results: The final PU-QOL contains 10 scales for measuring symptoms, physical functioning, psychological well-being and social participation specific to pressure ulcers. It is intended for administration and patients rate the amount of “bother” attributed during the past week on a 3-point response scale. Scale scores are generated by summing items, with lower scores indicating better outcome. The PU-QOL instrument was found to be acceptable, reliable (Cronbach{\textquoteright}s alpha values ranging 0.89 - 0.97) and valid (hypothesised correlations between PU-QOL and SF-12 scores (r >0.30) and PU-QOL scales and sociodemographic variables (r <0.30) were consistent with predictions). Conclusions: The PU-QOL instrument provides a standardised method for assessing PROs, reflecting the domains in a pressure ulcer-specific conceptual framework. It is intended for evaluating patient orientated differences between interventions and in particular the impact from the perspective of patients.",

keywords = "pressure ulcer, patient-reported outcomes, health-related quality of life, reliability, validity, rasch analysis, rating scale",

author = "Claudia Gorecki and Brown, {Julia M.} and Stefan Cano and Lamping, {Donna L.} and Michelle Briggs and Susanne Coleman and Carol Dealey and Elizabeth McGinnis and Nelson, {Andrea E.} and Nikki Stubbs and Lyn Wilson and Jane Nixon",

year = "2013",

month = jun,

day = "13",

doi = "10.1186/1477-7525-11-95",

language = "English",

volume = "11",

journal = "Health and Quality of Life Outcomes",

issn = "1477-7525",

publisher = "BioMed Central Ltd.",

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TY - JOUR

T1 - Development and validation of a new patient-reported outcome measure for patients with pressure ulcers: the PU-QOL instrument

AU - Gorecki, Claudia

AU - Brown, Julia M.

AU - Cano, Stefan

AU - Lamping, Donna L.

AU - Briggs, Michelle

AU - Coleman, Susanne

AU - Dealey, Carol

AU - McGinnis, Elizabeth

AU - Nelson, Andrea E.

AU - Stubbs, Nikki

AU - Wilson, Lyn

AU - Nixon, Jane

PY - 2013/6/13

Y1 - 2013/6/13

N2 - Background: Patient-reported outcome (PRO) data are integral to patient care, policy decision making and healthcare delivery. PRO assessment in pressure ulcers is in its infancy, with few studies including PROs as study outcomes. Further, there are no pressure ulcer PRO instruments available. Methods: We used gold-standard methods to develop and evaluate a new PRO instrument for people with pressure ulcers (the PU-QOL instrument). Firstly a conceptual framework was developed forming the basis of PU-QOL scales. Next an exhaustive item pool was used to produce a draft instrument that was pretested using mixed methods (cognitive interviews and Rasch Measurement Theory). Finally, we undertook psychometric evaluation in two parts. This first part was item reduction, using PU-QOL data from 227 patients. The second part was reliability and validity evaluation of the item-reduced version using both Traditional and Rasch methods, on PU-QOL data from 229 patients. Results: The final PU-QOL contains 10 scales for measuring symptoms, physical functioning, psychological well-being and social participation specific to pressure ulcers. It is intended for administration and patients rate the amount of “bother” attributed during the past week on a 3-point response scale. Scale scores are generated by summing items, with lower scores indicating better outcome. The PU-QOL instrument was found to be acceptable, reliable (Cronbach’s alpha values ranging 0.89 - 0.97) and valid (hypothesised correlations between PU-QOL and SF-12 scores (r >0.30) and PU-QOL scales and sociodemographic variables (r <0.30) were consistent with predictions). Conclusions: The PU-QOL instrument provides a standardised method for assessing PROs, reflecting the domains in a pressure ulcer-specific conceptual framework. It is intended for evaluating patient orientated differences between interventions and in particular the impact from the perspective of patients.

AB - Background: Patient-reported outcome (PRO) data are integral to patient care, policy decision making and healthcare delivery. PRO assessment in pressure ulcers is in its infancy, with few studies including PROs as study outcomes. Further, there are no pressure ulcer PRO instruments available. Methods: We used gold-standard methods to develop and evaluate a new PRO instrument for people with pressure ulcers (the PU-QOL instrument). Firstly a conceptual framework was developed forming the basis of PU-QOL scales. Next an exhaustive item pool was used to produce a draft instrument that was pretested using mixed methods (cognitive interviews and Rasch Measurement Theory). Finally, we undertook psychometric evaluation in two parts. This first part was item reduction, using PU-QOL data from 227 patients. The second part was reliability and validity evaluation of the item-reduced version using both Traditional and Rasch methods, on PU-QOL data from 229 patients. Results: The final PU-QOL contains 10 scales for measuring symptoms, physical functioning, psychological well-being and social participation specific to pressure ulcers. It is intended for administration and patients rate the amount of “bother” attributed during the past week on a 3-point response scale. Scale scores are generated by summing items, with lower scores indicating better outcome. The PU-QOL instrument was found to be acceptable, reliable (Cronbach’s alpha values ranging 0.89 - 0.97) and valid (hypothesised correlations between PU-QOL and SF-12 scores (r >0.30) and PU-QOL scales and sociodemographic variables (r <0.30) were consistent with predictions). Conclusions: The PU-QOL instrument provides a standardised method for assessing PROs, reflecting the domains in a pressure ulcer-specific conceptual framework. It is intended for evaluating patient orientated differences between interventions and in particular the impact from the perspective of patients.

KW - pressure ulcer

KW - patient-reported outcomes

KW - health-related quality of life

KW - reliability

KW - validity

KW - rasch analysis

KW - rating scale

U2 - 10.1186/1477-7525-11-95

DO - 10.1186/1477-7525-11-95

M3 - Article

C2 - 23764247

AN - SCOPUS:84878814503

SN - 1477-7525

VL - 11

JO - Health and Quality of Life Outcomes

JF - Health and Quality of Life Outcomes

M1 - 95

ER -

Development and validation of a new patient-reported outcome measure for patients with pressure ulcers: the PU-QOL instrument

Abstract

Keywords

ASJC Scopus subject areas

UN SDGs

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