A disease-specific Quality of Life questionnaire for primary aldosteronism
| Autor: | Aline H. de Nooijer, Henri J L M Timmers, Marieke Velema, Jacques W.M. Lenders, Olga Husson, Ad R. M. M. Hermus, Jaap Deinum |
|---|---|
| Jazyk: | angličtina |
| Rok vydání: | 2019 |
| Předmět: |
Disease specific
medicine.medical_specialty Endocrinology Diabetes and Metabolism Vascular damage Radboud Institute for Health Sciences [Radboudumc 16] lcsh:Diseases of the endocrine glands. Clinical endocrinology Endocrinology Primary aldosteronism All institutes and research themes of the Radboud University Medical Center Quality of life Health care Internal Medicine Medicine development lcsh:RC648-665 business.industry Research patient health questionnaire Vascular damage Radboud Institute for Molecular Life Sciences [Radboudumc 16] medicine.disease Focus group humanities Patient Health Questionnaire Systematic review quality of life Physical therapy Anxiety hyperaldosteronism medicine.symptom business Rare cancers Radboud Institute for Health Sciences [Radboudumc 9] |
| Zdroj: | Endocrine Connections, Vol 8, Iss 4, Pp 389-397 (2019) Endocrine Connections, 8, 4, pp. 389-397 Endocrine Connections, 8, 389-397 Endocrine Connections |
| ISSN: | 2049-3614 |
| Popis: | Objective To develop a primary aldosteronism (PA) disease-specific Health-Related Quality of Life (HRQoL) questionnaire. Methods We included newly diagnosed patients with PA (n = 26), and patients with PA after adrenalectomy (n = 25) or treated with mineralocorticoid receptor antagonists (n = 25). According to the guidelines for developing HRQoL questionnaires from the European Organization for Research and Treatment of Cancer (EORTC): Phase I: systematic literature review followed by focus group meetings with patients (n = 13) resulting in a list of 94 HRQoL issues. Relevance of issues was rated by 18 other patients and by health care professionals (n = 15), resulting in 30 remaining issues. Phase II: selected issues were converted into questions. Phase III: the provisional questionnaire was pre-tested by a third group of patients (n = 45) who also completed the EORTC core Quality of Life questionnaire (QLQ-C30). Psychometric testing resulted in a final selection of questions with their scale structure. Results After the collection and selection of HRQoL issues a provisional questionnaire consisting of 30 items was formed. Of these items, 26 could be assigned to one of the four scales ‘physical and mental fatigue’, ‘anxiety and stress’, ‘fluid balance’ and ‘other complaints’ cumulatively accounting for 68% of variation in all items. All scales had good reliability and validity. There was a significant correlation of all four scales with the QLQ-C30 in most cases. Conclusions We developed the first PA-specific HRQoL questionnaire (PA-QoL) using standard, methodologically proven guidelines. After completion of the final validation (phase IV, international field testing), the questionnaire can be implemented into clinical practice. |
| Databáze: | OpenAIRE |
| Externí odkaz: |
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