In 2003, this led an international Addison's survey project, covering members of the Addison's support groups in the UK, Canada, Australia and New Zealand. In 2006, the ADSHG conducted a further mini-survey of its UK members' emergency experiences. In 2013, it led a UK-wide survey project covering members of the four national support groups for people with steroid-dependent conditions: the ADSHG, Pituitary Foundation, Living with CAH and AMEND.
Below, we present summaries of these various research findings. These findings were all presented at the annual Society for Endocrinology conferences to doctors, nurses and scientists working on hormone-related conditions.
The ADSHG's member surveys are funded out of general, community donations to the charity, as part of our ongoing support to members. If you wish to make a contribution towards the work of the ADSHG, you can do so here:
- Society for Endocrinology BES 2017: It's a matter of time: the emergency of autoimmune polyendocrine syndrome among those with autoimmune Addison's reaches 100% among those diagnosed more than 50 years ago http://www.endocrine-abstracts.org/ea/0050/ea0050p012.htm
- Society for Endocrinology BES 2016: Lowered replacement glucocorticoid doses are associated with a rise in frequency of adrenal crisis.
- Society for Endocrinology BES 2015: Comorbidities are the norm for steroid-dependent patients and predispose to adrenal crisis. To view the full poster, click here
- Society for Endocrinology BES 2015: Steroid-dependent patients with multiple co-morbidities are more vulnerable to adrenal crisis. (You can view the abstract and full poster at the above link)
- Society for Endocrinology BES 2012: Beware the mean: Addison’s diagnoses may present from ages 3–85
- Society for Endocrinology BES 2011: GPs say they rely on endocrinologists to manage adrenal crisis and patient education for Addison’s disease
- Society for Endocrinology BES 2010: Ongoing symptoms in treated Addison's disease significantly impair health-related quality of life
- Society for Endocrinology BES 2009: Associated health conditions and occupational status are risk factors for adrenal crisis in treated Addison’s disease
- Society for Endocrinology BES 2008: Adrenal emergency is a regular event for treated Addison’s patients
- Society for Endocrinology BES 2008: Use of placebo for withdrawal of steroid therapy is contraindicated in adrenal insufficiency
- Society for Endocrinology BES 2007: Inheritance in autoimmune Addison's: the extended family profile
- Society for Endocrinology BES 2007: Adrenal emergencies in treated Addison's disease
- Society for Endocrinology BES 2006: Autoimmune hypoadrenalism: the profile of related conditions
- Society for Endocrinology BES 2006: Osteoporosis, osteopaenia and osteoarthritis in autoimmune hypoadrenalism
- Society for Endocrinology BES 2006: Autoimmune hypoadrenalism: symptoms at diagnosis
- Society for Endocrinology BES 2005: Medication management and quality of life in patients with primary adrenal insufficiency
- Society for Endocrinology BES 2003: Steroid replacement therapy: the challenges of medication management in adrenal insufficiency, with reference to insights from patients' experiences
The ADSHG's member survey analysis has also been discussed in the following academic articles:
- European Journal of Endocrinology 2010: Adrenal crisis in treated Addison's disease: a predictable but undermanaged event
- Journal of Medical Humanities 2009: Jane Austen and Addison's: an unconvincing diagnosis
The 1997 ADSHG member survey report can be viewed in the ADSHG publications centre here.
You can read about similar epidemiological studies from other countries in the open access articles listed below.
- Forss et al. 2012 Worldwide patient survey of glucocorticoid replacement therapy, BMC Endocrine Disorders 12 8
- Erichsen et al. 2011 Clinical, immunological, and genetic features of autoimmune primary adrenal insufficiency: observations from a Norwegian registry, Journal of Clinical Endocrinology & Metabolism 94 4882-4890
- Erichsen et al. 2008 Normal overall mortality rate in Addison's disease, but young patients are at risk of premature death, European Journal of Endocrinology 160 233-237