RT Journal Article
T1 Development of a new tool for assessing health-related quality of life in patients with primary hyperparathyroidism.
A1 Webb, Susan M
A1 Puig-Domingo, Manel
A1 Villabona, Carles
A1 Muñoz-Torres, Manuel
A1 Farrerons, Jordi
A1 Badía, Xavier
K1 Hiperparatiroidismo primario
K1 Indicadores de calidad de la atención de salud
K1 Calidad de vida
K1 Índice de severidad de la enfermedad
K1 Cuestionarios
K1 Grupos focales
AB BACKGROUNDSeveral 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.METHODSA 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.RESULTS259 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.CONCLUSIONThe 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.
PB BioMed Central
YR 2013
FD 2013-06
LK http://hdl.handle.net/10668/1941
UL http://hdl.handle.net/10668/1941
LA en
NO Webb SM, Puig-Domingo M, Villabona C, Muñoz-Torres M, Farrerons J, Badia X. Development of a new tool for assessing health-related quality of life in patients with primary hyperparathyroidism. Health Qual Life Outcomes. 2013; 11:97
NO Journal Article; Research Support, Non-U.S. Gov't;
DS RISalud
RD Apr 11, 2025