Development of a new tool for assessing Health-Related Quality of Life in patients with primary hyperparathyroidism
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RESEARCH
Open Access
Development of a new tool for assessing Health-Related Quality of Life in patients with primary hyperparathyroidism Susan M Webb1,2*, Manel Puig-Domingo3, Carles Villabona4, Manuel Muñoz-Torres5, Jordi Farrerons6 and Xavier Badia7
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.
Introduction Primary hyperparathyroidism (PHPT) is an endocrine disease characterized by hypercalcemia attributable to autonomous overproduction of parathyroid hormone (PTH). Therefore PHPT, is often detected by routine serum calcium measurement [1]. Poor control of elevated calcium levels can increase the risk of mortality due to cardiovascular, gastrointestinal, nervous, or kidney disorders or problems affecting bones and muscles [2]. In eight out of * Correspondence: [email protected] 1 Department of Medicine/Endocrinology, Hospital Sant Pau, Pare Claret 167, 08025 Barcelona, Spain 2 Centro de Investigación Biomédica de Enfermedades Raras (CIBER_ER Unit 747), Instituto de Salud Carlos III Universitat Autònoma de Barcelona, Barcelona, Spain Full list of author information is available at the end of the article
ten cases, the cause is a solitary, benign tumor (chiefcell adenoma) [3]. The prevalence of PHPT increases with age and is greater in women than in men; 80
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