Quality of Life in European Patients with Addison's Disease: Validity of the Disease-Specific Questionnaire AddiQoL
Open accessAbstract
CONTEXT: Patients with Addison's disease (AD) self-report impairment in specific dimensions on well-being questionnaires. An AD-specific quality-of-life questionnaire (AddiQoL) was developed to aid evaluation of patients. OBJECTIVE: We aimed to translate and determine construct validity, reliability, and concurrent validity of the AddiQoL questionnaire. METHODS: After translation, the final versions were tested in AD patients from Norway (n = 107), Sweden (n = 101), Italy (n = 165), Germany (n = 200), and Poland (n = 50). Construct validity was examined by exploratory factor analysis and Rasch analysis, aiming at unidimensionality and fit to the Rasch model. Reliability was determined by Cronbach's coefficient-α and Person separation index. Longitudinal reliability was tested by differential item functioning in stable patient subgroups. Concurrent validity was examined in Norwegian (n = 101) and Swedish (n = 107) patients. RESULTS: Exploratory factor analysis and Rasch analysis identified six items with poor psychometric properties. The 30 remaining items fitted the Rasch model and proved unidimensional, supported by appropriate item and person fit residuals and a nonsignificant χ(2) probability. Crohnbach's α-coefficient 0.93 and Person separation index 0.86 indicate high reliability. Longitudinal reliability was excellent. Correlation with Short Form-36 and Psychological General Well-Being Index scores was high. A shorter subscale comprising eight items also proved valid and reliable. Testing of AddiQoL-30 in this large patient cohort showed significantly worse scores with increasing age and in women compared with men but no difference between patients with isolated AD and those with concomitant diseases. CONCLUSION: The validation process resulted in a revised 30-item AddiQoL questionnaire and an eight-item AddiQoL short version with good psychometric properties and high reliability.
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The Addison's disease-specific quality of life questionnaire (AddiQoL) was established by the European consortium EURADRENAL to assess health-related QoL in patients with PAI.
“The Addison’s disease-specific quality of life questionnaire (AddiQoL) was established by the European consortium EURADRENAL to assess health-related QoL in patients with PAI.70”
From Adrenal crisis: prevention and management in adult patients (2019) · cites this paper as [70]
The Questionnaires section describes AddiQoL as a disease-specific measure of health-related quality of life in Addison’s disease, and the Discussion reports that this study validated a revised 30-item version. The Funding section identifies Euradrenal as a supporter of this work, but the paper says the original questionnaire had already been developed; it does not establish that EURADRENAL created it. Page numbers are unavailable in our copy. (LLM, conf=0.82)
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- Authors
- Øksnes, M., Bensing, S., Hulting, A.-L., Kämpe, O., Hackemann, A., Meyer, G., Badenhoop, K., Betterle, C., Parolo, A., Giordano, R., Falorni, A., Papierska, L., Jeske, W., Kasperlik-Zaluska, A. A., Chatterjee, V. K. K., Husebye, E. S., & Løvås, K.
- Affiliations
- Haukeland University Hospital (NO)
- Uppsala University (SE)
- Karolinska Institutet (SE)
- Goethe University Frankfurt (DE)
- University of Padua (IT)
- University of Turin (IT)
- University of Perugia (IT)
- Corresponding author
- Øksnes, Marianne
- ORCID
- Venue
- The Journal of Clinical Endocrinology & Metabolism
- Publisher
- The Endocrine Society
- Published
- 2012-02
- Volume
- 97
- Issue
- 2
- Pages
- 568-576
- ISSN
- 0021-972X (ISSN-L)
- 1945-7197
- OpenAlex
- W1969116334
- Cited by
- 99
- References
- 37
- Citations by year
- 2026: 9 · 2025: 5 · 2024: 4 · 2023: 9 · 2022: 7 · 2021: 13 · 2020: 7 · 2019: 6 · 2018: 6 · 2017: 5 · 2016: 7 · 2015: 5 · 2014: 10 · 2013: 2 · 2012: 3
- FWCI
- 3.94
- Type
- journal article
- Language
- en
- Open access
- green
- hdl.handle.net
- Licence
- other-oa
- Locations
- The Journal of Clinical Endocrinology & Metabolism (publishedVersion)
- PubMed (publishedVersion)
- Institutional Research Information System University of Turin (University of Turin) (submittedVersion, other-oa)
- NORA - Norwegian Open Research Archives (submittedVersion, other-oa)
- Padua Research Archive (University of Padova) (submittedVersion)
- Funders
- National Institute for Health and Care Research (NF-SI-0508-10198)
- European Commission (201167)
- Santen
- Svenska Läkaresällskapet
- Topics
- Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Adrenal Hormones and Disorders
- Social Sciences › Decision Sciences › Management Science and Operations Research › Psychometric Methodologies and Testing
- Social Sciences › Education › Health Education and Validation
- Keywords
- Addison's disease, quality of life, disease-specific questionnaire, questionnaire validation, psychometric properties, construct validity, reliability statistics, concurrent validity, Rasch analysis, factor analysis, differential item functioning, patient-reported outcomes, short-form questionnaire, sex differences, age differences
- MeSH terms
- Addison Disease, Adolescent, Adult, Aged, Europe, Female, Germany, Humans, Italy, Male, Middle Aged, Norway, Poland, Quality of Life, Surveys and Questionnaires, Sweden, Reproducibility of Results, Young Adult
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