Development of a new tool for assessing Health-Related Quality of Life in patients with primary hyperparathyroidism
Webb, Susan 1952- (Institut d'Investigació Biomèdica Sant Pau)
Puig Domingo, Manuel (Institut Germans Trias i Pujol. Hospital Universitari Germans Trias i Pujol)
Villabona, Carles (Hospital Universitari de Bellvitge)
Muñoz-Torres, M. (Hospital Universitario San Cecilio (Granada))
Farrerons Minguella, Jordi (Hospital de la Santa Creu i Sant Pau (Barcelona, Catalunya))
Badia, Xavier (IMS Health)
Universitat Autònoma de Barcelona

Data:	2013
Resum:	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. © 2013 Webb et al. ; licensee BioMed Central Ltd.
Drets:	Aquest document està subjecte a una llicència d'ús Creative Commons. Es permet la reproducció total o parcial, la distribució, la comunicació pública de l'obra i la creació d'obres derivades, fins i tot amb finalitats comercials, sempre i quan es reconegui l'autoria de l'obra original.
Llengua:	Anglès
Document:	Article ; recerca ; Versió publicada
Publicat a:	Health and quality of life outcomes, Vol. 11 Núm. 1 (18 2013) , p. 97, ISSN 1477-7525

DOI: 10.1186/1477-7525-11-97
PMID: 23777622

8 p, 303.1 KB

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Documents de recerca > Documents dels grups de recerca de la UAB > Centres i grups de recerca (producció científica) > Ciències de la salut i biociències > Institut d'Investigació en Ciencies de la Salut Germans Trias i Pujol (IGTP)
Documents de recerca > Documents dels grups de recerca de la UAB > Centres i grups de recerca (producció científica) > Ciències de la salut i biociències > Institut de Recerca Sant Pau
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