A disease-specific Quality of Life questionnaire for primary aldosteronism
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 = 2...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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Bioscientifica
2019-04-01
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| Series: | Endocrine Connections |
| Subjects: | |
| Online Access: | https://ec.bioscientifica.com/view/journals/ec/8/4/EC-19-0026.xml |
| _version_ | 1828524033976565760 |
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| author | Marieke Stientje Velema Aline de Nooijer Ad R M M Hermus Henri J L M Timmers Jacques W M Lenders Olga Husson Jaap Deinum |
| author_facet | Marieke Stientje Velema Aline de Nooijer Ad R M M Hermus Henri J L M Timmers Jacques W M Lenders Olga Husson Jaap Deinum |
| author_sort | Marieke Stientje Velema |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-12-11T20:38:49Z |
| format | Article |
| id | doaj.art-472362f2008142b991b6fa71f9f25685 |
| institution | Directory Open Access Journal |
| issn | 2049-3614 2049-3614 |
| language | English |
| last_indexed | 2024-12-11T20:38:49Z |
| publishDate | 2019-04-01 |
| publisher | Bioscientifica |
| record_format | Article |
| series | Endocrine Connections |
| spelling | doaj.art-472362f2008142b991b6fa71f9f256852022-12-22T00:51:34ZengBioscientificaEndocrine Connections2049-36142049-36142019-04-0184389397https://doi.org/10.1530/EC-19-0026A disease-specific Quality of Life questionnaire for primary aldosteronismMarieke Stientje Velema0Aline de Nooijer1Ad R M M Hermus2Henri J L M Timmers3Jacques W M Lenders4Olga Husson5Jaap Deinum6Department of Internal Medicine, Radboud University Medical Center, Nijmegen, the NetherlandsDepartment of Internal Medicine, Radboud University Medical Center, Nijmegen, the NetherlandsDepartment of Internal Medicine, Radboud University Medical Center, Nijmegen, the NetherlandsDepartment of Internal Medicine, Radboud University Medical Center, Nijmegen, the NetherlandsDepartment of Internal Medicine, Radboud University Medical Center, Nijmegen, the Netherlands; Department of Internal Medicine III, University Hospital Carl Gustav Carus at the Technical University Dresden, Dresden, GermanyDivision of Clinical Studies, Institute of Cancer Research, London, UKDepartment of Internal Medicine, Radboud University Medical Center, Nijmegen, the Netherlands; Department of Internal Medicine III, University Hospital Carl Gustav Carus at the Technical University Dresden, Dresden, GermanyObjective: 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.https://ec.bioscientifica.com/view/journals/ec/8/4/EC-19-0026.xmlhyperaldosteronismquality of lifepatient health questionnairedevelopment |
| spellingShingle | Marieke Stientje Velema Aline de Nooijer Ad R M M Hermus Henri J L M Timmers Jacques W M Lenders Olga Husson Jaap Deinum A disease-specific Quality of Life questionnaire for primary aldosteronism Endocrine Connections hyperaldosteronism quality of life patient health questionnaire development |
| title | A disease-specific Quality of Life questionnaire for primary aldosteronism |
| title_full | A disease-specific Quality of Life questionnaire for primary aldosteronism |
| title_fullStr | A disease-specific Quality of Life questionnaire for primary aldosteronism |
| title_full_unstemmed | A disease-specific Quality of Life questionnaire for primary aldosteronism |
| title_short | A disease-specific Quality of Life questionnaire for primary aldosteronism |
| title_sort | disease specific quality of life questionnaire for primary aldosteronism |
| topic | hyperaldosteronism quality of life patient health questionnaire development |
| url | https://ec.bioscientifica.com/view/journals/ec/8/4/EC-19-0026.xml |
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