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Health and Quality of Life Outcomes
Published in: Health and Quality of Life Outcomes 1/2013

Open Access 01-12-2013 | Research

Development of a new tool for assessing Health-Related Quality of Life in patients with primary hyperparathyroidism

Authors: Susan M Webb, Manel Puig-Domingo, Carles Villabona, Manuel Muñoz-Torres, Jordi Farrerons, Xavier Badia

Published in: Health and Quality of Life Outcomes | Issue 1/2013

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Abstract

Background

Several studies in recent years have evaluated Health Related Quality of Life (HRQoL) of patients with primary hyperparathyroidism (PHPT). No disease specific questionnaires are available to assess the impact of the disease. The aim of this research is to describe the development of a new disease specific Quality of Life (QoL) questionnaire for use specifically with PHPT patients.

Methods

A conceptual model was developed describing the impact of the disease and its symptoms on QoL domains. A literature review was conducted to identify the most relevant domains. A focus group with experts was used to validate the domains; 24 patients were also interviewed to complement the information from the patient’s perspective. A content analysis of the interviews was performed to identify items related with the impact of the disease, leading to PHPQoL-V.1 which was presented to a sample of 67 patients. Reliability was assessed by Cronbach’s coefficient alpha and item-total score correlations. Validity was assessed by a factor analysis performed to determine the number of domains. Rasch analysis was carried out in order to refine the questionnaire items.

Results

259 items were extracted from the interviews that were subsequently reduced to 34 items. Cronbach’s coefficient alpha was 0.92. The factor analysis extracted two domains (physical and emotional). After Rasch analysis the questionnaire PHPQoL-V.2 kept 16 items (9 physical and 7 emotional). The questionnaire was developed in a Spanish population and the final version was translated to English through translation and back-translation.

Conclusion

The first disease specific HRQoL questionnaire for PHPT patients (PHPQoL-16) has been developed. Validation studies designed to assess measurement properties of this tool are currently underway.
Appendix
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Metadata
Title
Development of a new tool for assessing Health-Related Quality of Life in patients with primary hyperparathyroidism
Authors
Susan M Webb
Manel Puig-Domingo
Carles Villabona
Manuel Muñoz-Torres
Jordi Farrerons
Xavier Badia
Publication date
01-12-2013
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2013
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/1477-7525-11-97

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