Development of a disease-specific quality of life questionnaire in Addison's disease
Journal article
Løvås, Kristian, Curran, Suzanne, Øksnes, Marianne, Husebye, Eystein S., Huppert, Felicia A. and Chatterjee, V. Krishna K.. (2010). Development of a disease-specific quality of life questionnaire in Addison's disease. The Journal of Clinical Endocrinology and Metabolism. 95(2), pp. 545 - 551. https://doi.org/10.1210/jc.2009-1711
Authors | Løvås, Kristian, Curran, Suzanne, Øksnes, Marianne, Husebye, Eystein S., Huppert, Felicia A. and Chatterjee, V. Krishna K. |
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Abstract | Context: Patients with Addison’s disease reproducibly self-report impairment in specific dimensions of general well-being questionnaires, suggesting particular deficiencies in health-related quality-of-life (HRQoL). Objective: We sought to develop an Addison’s disease-specific questionnaire (AddiQoL) that could better quantify altered well-being and treatment effects. Design, Setting, Patients, Intervention, and Outcomes: We reviewed the literature to identify HRQoL issues in Addison’s disease and interviewed patients and their partners in-depth to explore various symptom domains. A list of items was generated, and nine expert clinicians and five expert patients assessed the list for impact and clarity. A preliminary questionnaire was presented to 100 Addison’s outpatients; the number of items was reduced after analysis of the distribution of the responses. The final questionnaire responses were assessed by Cronbach’s α and Rasch analysis. Results and Interpretation: Published studies of HRQoL in Addison’s disease indicated reduced vitality and general health perception and limitations in physical and emotional functioning. In-depth interviews of 14 patients and seven partners emphasized the impact of the disease on the emotional domain. Seventy HRQoL items were generated; after the expert consultation process and pretesting in 100 patients, the number of items was reduced to 36. Eighty-six patients completed the final questionnaire; the responses showed high internal consistency with Cronbach’s α 0.95 and Person Separation Index 0.94 (Rasch analysis). Conclusions: We envisage AddiQoL having utility in trials of hormone replacement and management of patients with Addison’s disease, analogous to similar questionnaires in GH deficiency (AGHDA) and acromegaly (AcroQoL). |
Year | 2010 |
Journal | The Journal of Clinical Endocrinology and Metabolism |
Journal citation | 95 (2), pp. 545 - 551 |
Publisher | Oxford University Press |
ISSN | 0021-972X |
Digital Object Identifier (DOI) | https://doi.org/10.1210/jc.2009-1711 |
Scopus EID | 2-s2.0-76149133631 |
Page range | 545 - 551 |
Place of publication | United States of America |
https://acuresearchbank.acu.edu.au/item/86693/development-of-a-disease-specific-quality-of-life-questionnaire-in-addison-s-disease
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