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
AuthorsLøvås, Kristian, Curran, Suzanne, Øksnes, Marianne, Husebye, Eystein S., Huppert, Felicia A. and Chatterjee, V. Krishna K.
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).

Year2010
JournalThe Journal of Clinical Endocrinology and Metabolism
Journal citation95 (2), pp. 545 - 551
PublisherOxford University Press
ISSN0021-972X
Digital Object Identifier (DOI)https://doi.org/10.1210/jc.2009-1711
Scopus EID2-s2.0-76149133631
Page range545 - 551
Place of publicationUnited States of America
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