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

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.

Authors: M Forss1*, G Batcheller1, S Skrtic2 and G Johannsson3 (Winter, 2012)

1DuoCort Pharma, Medicinaregatan 8A, 413 46, Gothenburg, Sweden.
2Department of Clinical Pharmacology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.

3Department of Endocrinology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.

Editor’s Note: Some of you may remember taking part in a survey regarding adrenal insufficiency. The results of that study have been published! The above in an abstract of the full paper. If you have adrenal insufficiency, the full article is well worth the reading time! The CSRF is mentioned in the article as a patient group that participated.

Reference

Forss et al. BMC Endocrine Disorders 2012, 12:8

http://www.biomedcentral.com/1472-6823/12/8

© 2012 Forss et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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