Cited by 109Adrenal Hormones and DisordersStress Responses and CortisolHormonal and reproductive studies

Current practice of glucocorticoid replacement therapy and patient-perceived health outcomes in adrenal insufficiency – a worldwide patient survey

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Forss, M, Batcheller, G, Skrtic, S, Johannsson, G·2012·BMC Endocrine Disorders

Abstract

BACKGROUND: The aim was to survey current practice in glucocorticoid replacement therapy and self-perceived health outcomes in patients with adrenal insufficiency. METHODS: Participants were recruited via patient organizations to respond anonymously to a web-based survey developed by clinical experts. Unique entries were set up for each patient organization enabling geographical localization of the entries. RESULTS: 1245 participants responded (primary adrenal insufficiency: 84%; secondary adrenal insufficiency: 11%; unsure: 5%). Therapies included hydrocortisone (75%), prednisone/prednisolone (11%), cortisone acetate (6%) and dexamethasone (4%). Dosing regimens were once daily (10%), twice daily (42%), thrice daily (32%) or other (17%). Compromised subjective health necessitating changes to physical activity or social-, work- or family life was reported by 64% of the participants. 40% of the participants reported absence from work/school in the last 3 months. Irrespective of diagnosis, 76% were concerned about long-term side-effects of therapy, mainly osteoporosis (78%), obesity (64%) and cardiovascular morbidity (46%). 38% of the participants had been hospitalized in the last year. CONCLUSIONS: Glucocorticoid replacement therapy among the respondents consisted primarily of hydrocortisone administered twice or thrice daily. A majority reported impact of their disease or treatment on subjective health requiring alterations in e.g. physical activity or family life. Three quarters reported concerns about long-term side-effects of the treatment. These data demonstrate - from the patients' perspective - a need for improvement in the management of adrenal insufficiency.

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Research works printed but not linked: 2

  1. Holleman J Illness, healthcare, and the quality of life A survey among patients with Addison’s disease, Cushing’s syndrome or congenital adrenal Hyperplasia (CAH) 2006 Dutch Addison and Cushing Society: NVACP, the Netherlands (English version: November 2007)
  2. Margulies PL Mullen J National Adrenal Diseases Foundation National Adrenal Diseases Foundation North American survey of individuals with Addison's disease 1997 http://www.nadf.us/news/survey1997_text.pdf

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Authors
Forss, M., Batcheller, G., Skrtic, S., & Johannsson, G.
Affiliations
University of Gothenburg (SE)
Corresponding author
Forss, M
Venue
BMC Endocrine Disorders
Published
2012-06-13
Volume
12
Issue
1
Pages
8-8
ISSN
1472-6823 (ISSN-L)
OpenAlex
W2158270876
Cited by
109
References
28
Citations by year
2026: 2 · 2024: 7 · 2023: 3 · 2022: 3 · 2021: 10 · 2020: 10 · 2019: 10 · 2018: 15 · 2017: 10 · 2016: 15 · 2015: 8 · 2014: 13 · 2013: 3
FWCI
6.16
Type
journal article
Language
en
Open access
Locations
  • BMC Endocrine Disorders (publishedVersion, cc-by)
  • Europe PMC (PubMed Central) (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
Topics
  • Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Adrenal Hormones and Disorders
  • Life Sciences › Neuroscience › Behavioral Neuroscience › Stress Responses and Cortisol
  • Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Hormonal and reproductive studies
Keywords
adrenal insufficiency, glucocorticoid replacement therapy, cortisol, prednisone, cortisone acetate, dexamethasone, dosing regimen, quality of life, absenteeism, osteoporosis, late effects, hospitalization, patient survey

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