Webb, Susan MPuig-Domingo, ManelVillabona, CarlesMuñoz-Torres, ManuelFarrerons, JordiBadía, Xavier2015-08-042015-08-042013-06Webb 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; 11:97http://hdl.handle.net/10668/1941Journal Article; Research Support, Non-U.S. Gov't;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.enHiperparatiroidismo primarioIndicadores de calidad de la atención de saludCalidad de vidaÍndice de severidad de la enfermedadCuestionariosGrupos focalesMedical Subject Headings::Named Groups::Persons::Age Groups::Adult::AgedMedical Subject Headings::Check Tags::FemaleMedical Subject Headings::Health Care::Health Care Quality, Access, and Evaluation::Quality of Health Care::Health Care Evaluation Mechanisms::Data Collection::Interviews as Topic::Focus GroupsMedical Subject Headings::Organisms::Eukaryota::Animals::Chordata::Vertebrates::Mammals::Primates::Haplorhini::Catarrhini::Hominidae::HumansMedical Subject Headings::Diseases::Endocrine System Diseases::Parathyroid Diseases::Hyperparathyroidism::Hyperparathyroidism, PrimaryMedical Subject Headings::Check Tags::MaleMedical Subject Headings::Named Groups::Persons::Age Groups::Adult::Middle AgedMedical Subject Headings::Health Care::Health Services Administration::Quality of Health Care::Quality Indicators, Health CareMedical Subject Headings::Humanities::Humanities::Philosophy::Life::Quality of LifeMedical Subject Headings::Health Care::Environment and Public Health::Public Health::Epidemiologic Methods::Data Collection::QuestionnairesMedical Subject Headings::Analytical, Diagnostic and Therapeutic Techniques and Equipment::Investigative Techniques::Epidemiologic Methods::Data Collection::Health Surveys::Health Status Indicators::Severity of Illness IndexMedical Subject Headings::Named Groups::Persons::Age Groups::Adultresearch article23777622open access10.1186/1477-7525-11-971477-7525PMC3710251