{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,20]],"date-time":"2026-07-20T14:16:56Z","timestamp":1784557016519,"version":"3.55.0"},"reference-count":27,"publisher":"Bioscientifica","issue":"4","license":[{"start":{"date-parts":[[2019,4,1]],"date-time":"2019-04-01T00:00:00Z","timestamp":1554076800000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["ec.bioscientifica.com"],"crossmark-restriction":true},"short-container-title":[],"published-print":{"date-parts":[[2019,4]]},"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To develop a primary aldosteronism (PA) disease-specific Health-Related Quality of Life (HRQoL) questionnaire.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      We included newly diagnosed patients with PA (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200926), and patients with PA after adrenalectomy (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200925) or treated with mineralocorticoid receptor antagonists (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200925). 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                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200913) resulting in a list of 94 HRQoL issues. Relevance of issues was rated by 18 other patients and by health care professionals (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200915), 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                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200945) 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.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>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 \u2018physical and mental fatigue\u2019, \u2018anxiety and stress\u2019, \u2018fluid balance\u2019 and \u2018other complaints\u2019 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1530\/ec-19-0026","type":"journal-article","created":{"date-parts":[[2019,3,13]],"date-time":"2019-03-13T15:46:32Z","timestamp":1552491992000},"page":"389-397","update-policy":"https:\/\/doi.org\/10.1530\/crossmarkpolicy-10","source":"Crossref","is-referenced-by-count":9,"title":["A disease-specific Quality of Life questionnaire for primary aldosteronism"],"prefix":"10.1530","volume":"8","author":[{"given":"Marieke Stientje","family":"Velema","sequence":"first","affiliation":[{"name":"1Department of Internal Medicine, Radboud University Medical Center, Nijmegen, the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aline","family":"de Nooijer","sequence":"additional","affiliation":[{"name":"1Department of Internal Medicine, Radboud University Medical Center, Nijmegen, the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ad R M M","family":"Hermus","sequence":"additional","affiliation":[{"name":"1Department of Internal Medicine, Radboud University Medical Center, Nijmegen, the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Henri J L M","family":"Timmers","sequence":"additional","affiliation":[{"name":"1Department of Internal Medicine, Radboud University Medical Center, Nijmegen, the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jacques W M","family":"Lenders","sequence":"additional","affiliation":[{"name":"1Department of Internal Medicine, Radboud University Medical Center, Nijmegen, the Netherlands"},{"name":"2Department of Internal Medicine III, University Hospital Carl Gustav Carus at the Technical University Dresden, Dresden, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Olga","family":"Husson","sequence":"additional","affiliation":[{"name":"3Division of Clinical Studies, Institute of Cancer Research, London, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jaap","family":"Deinum","sequence":"additional","affiliation":[{"name":"1Department of Internal Medicine, Radboud University Medical Center, Nijmegen, the Netherlands"},{"name":"2Department of Internal Medicine III, University Hospital Carl Gustav Carus at the Technical University Dresden, Dresden, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"416","reference":[{"key":"ref241","doi-asserted-by":"crossref","first-page":"1650","DOI":"10.1016\/j.jpsychires.2012.08.025","article-title":"Quality of life in patients with primary aldosteronism: gender differences in untreated and long-term treated patients and associations with treatment and aldosterone","volume":"46","year":"2012","journal-title":"Journal of Psychiatric Research"},{"key":"ref201","year":"2001","journal-title":"The EORTC QLQ-C30 Scoring Manual"},{"key":"ref151","doi-asserted-by":"crossref","first-page":"943","DOI":"10.1055\/s-0043-121706","article-title":"Health-related quality of life and mental health in primary aldosteronism: a systematic review","volume":"49","year":"2017","journal-title":"Hormone and Metabolic Research"},{"key":"ref191","year":"1994","journal-title":"Psychometric Theory"},{"key":"ref171","year":"2009","journal-title":"European Organization for Research and Treatment of Cancer Quality of Life Group Translation Procedure"},{"key":"ref181","doi-asserted-by":"crossref","first-page":"31","DOI":"10.1007\/BF02291575","article-title":"An index of factorial simplicity","volume":"39","year":"1974","journal-title":"Psychometrika"},{"key":"ref141","doi-asserted-by":"crossref","first-page":"1889","DOI":"10.1210\/jc.2015-4061","article-title":"The management of primary aldosteronism: case detection, diagnosis, and treatment: an Endocrine Society clinical practice guideline","volume":"101","year":"2016","journal-title":"Journal of Clinical Endocrinology and Metabolism"},{"key":"ref101","year":"2002","journal-title":"EORTC Quality of Life Group: Guidelines for Developing Questionnaire Modules"},{"key":"ref01","doi-asserted-by":"crossref","first-page":"3266","DOI":"10.1210\/jc.2008-0104","article-title":"Case detection, diagnosis, and treatment of patients with primary aldosteronism: an endocrine society clinical practice guideline","volume":"93","year":"2008","journal-title":"Journal of Clinical Endocrinology and Metabolism"},{"key":"ref81","doi-asserted-by":"crossref","first-page":"117","DOI":"10.1016\/S0149-7634(01)00002-1","article-title":"Corticosteroids in relation to fear, anxiety and psychopathology","volume":"25","year":"2001","journal-title":"Neuroscience and Biobehavioral Reviews"},{"key":"ref121","doi-asserted-by":"crossref","first-page":"291","DOI":"10.1023\/A:1008890401133","article-title":"The European Organization for Research and Treatment of Cancer approach to developing questionnaire modules: an update and overview","volume":"7","year":"1998","journal-title":"Quality of Life Research"},{"key":"ref61","doi-asserted-by":"crossref","first-page":"327","DOI":"10.1159\/000093956","article-title":"Psychological aspects of primary aldosteronism","volume":"75","year":"2006","journal-title":"Psychotherapy and Psychosomatics"},{"key":"ref131","doi-asserted-by":"crossref","first-page":"1308","DOI":"10.1530\/EC-18-0358","article-title":"A prediction model for primary aldosteronism when the salt loading test is inconclusive","volume":"7","year":"2018","journal-title":"Endocrine Connections"},{"key":"ref221","doi-asserted-by":"crossref","first-page":"969","DOI":"10.1055\/s-0043-122887","article-title":"Primary aldosteronism and obstructive sleep apnea: is this a bidirectional relationship?","volume":"49","year":"2017","journal-title":"Hormone and Metabolic Research"},{"key":"ref111","doi-asserted-by":"crossref","first-page":"287","DOI":"10.1007\/BF00434800","article-title":"The European Organization for Research and Treatment of Cancer approach to quality of life assessment: guidelines for developing questionnaire modules","volume":"2","year":"1993","journal-title":"Quality of Life Research"},{"key":"ref251","first-page":"e483","article-title":"MP37-19 short-term impact on health-related quality of life of laparoscopic adrenalectomy for primary aldosteronism in Japanese patients","volume":"197","year":"2017","journal-title":"Journal of Urology"},{"key":"ref161","doi-asserted-by":"crossref","first-page":"1611","DOI":"10.1016\/S0959-8049(02)00125-9","article-title":"The development and utilisation of the European Organisation for Research and Treatment of Cancer quality of life group item bank","volume":"38","year":"2002","journal-title":"European Journal of Cancer"},{"key":"ref41","doi-asserted-by":"crossref","first-page":"1360","DOI":"10.1210\/jc.2009-1763","article-title":"Improved quality of life, blood pressure, and biochemical status following laparoscopic adrenalectomy for unilateral primary aldosteronism","volume":"95","year":"2010","journal-title":"Journal of Clinical Endocrinology and Metabolism"},{"key":"ref21","doi-asserted-by":"crossref","first-page":"232","DOI":"10.1161\/01.HYP.0000230444.01215.6a","article-title":"Renal damage in primary aldosteronism: results of the PAPY study","volume":"48","year":"2006","journal-title":"Hypertension"},{"key":"ref231","doi-asserted-by":"crossref","first-page":"52","DOI":"10.1210\/endo-97-1-52","article-title":"Antiandrogenic effect of spirolactones: mechanism of action","volume":"97","year":"1975","journal-title":"Endocrinology"},{"key":"ref261","doi-asserted-by":"crossref","first-page":"26","DOI":"10.3109\/15622975.2012.665480","article-title":"Gender differences in anxiety and depressive symptoms in patients with primary hyperaldosteronism: a cross-sectional study","volume":"15","year":"2014","journal-title":"World Journal of Biological Psychiatry"},{"key":"ref11","doi-asserted-by":"crossref","first-page":"1045","DOI":"10.1210\/jc.2003-031337","article-title":"Increased diagnosis of primary aldosteronism, including surgically correctable forms, in centers from five continents","volume":"89","year":"2004","journal-title":"Journal of Clinical Endocrinology and Metabolism"},{"key":"ref211","doi-asserted-by":"crossref","first-page":"16","DOI":"10.1210\/jc.2017-01442","article-title":"Quality of life in primary aldosteronism: a comparative effectiveness study of adrenalectomy and medical treatment","volume":"103","year":"2018","journal-title":"Journal of Clinical Endocrinology and Metabolism"},{"key":"ref71","doi-asserted-by":"publisher","first-page":"201196","DOI":"10.1210\/jc.2010-2723","article-title":"assessment of primary aldosteronism a controlled study of and https org","journal-title":"Psychological Journal Clinical Endocrinology Metabolism"},{"key":"ref51","doi-asserted-by":"crossref","first-page":"2904","DOI":"10.1210\/jc.2011-0138","article-title":"Quality of life in patients with bilateral primary aldosteronism before and during treatment with spironolactone and\/or amiloride, including a comparison with our previously published results in those with unilateral disease treated surgically","volume":"96","year":"2011","journal-title":"Journal of Clinical Endocrinology and Metabolism"},{"key":"ref91","doi-asserted-by":"crossref","first-page":"84","DOI":"10.1186\/s12955-016-0483-x","article-title":"Standardizing disease-specific quality of life measures across multiple chronic conditions: development and initial evaluation of the QOL Disease Impact Scale (QDIS(R))","volume":"14","year":"2016","journal-title":"Health and Quality of Life Outcomes"},{"key":"ref31","year":"1990","journal-title":"Quality of Life Studies: Definitions and Conceptual Issues"}],"container-title":["Endocrine 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