There are a number of ways that the ADSHG can assist endocrinologists to support their steroid-dependent patients.
Resources to inform others
The ADSHG produces a number of resources that you may find helpful to provide to your patients, to help them learn more about their condition, and also for non-endocrine healthcare professionals, to support their roles in treating patients with Addison’s and other forms of steroid-dependence. Of particular interest may be:
- Managing your Addison’s - a summary of the key points everyone with Addison's needs to know to manage their health.
- ADSHG crisis guidelines - emergency medical treatment guidance for paramedics and hospital staff in the event of a person with Addison's experiencing adrenal crisis.
- Our video hub and YouTube channel both contain films showing a step-by-step guide on how to give an emergency injection. Additionally, Professor John Wass, Chair of the Addison's Clinical Advisory Panel, gives his advice on when to give an emergency injection.
Other healthcare professionals
- ADSHG crisis guidelines - emergency medical treatment guidance for paramedics or hospital staff in the event of a person with Addison's suffering an adrenal crisis.
- ADSHG surgical guidelines – explain the level of extra medication and monitoring patients with Addison's disease will need in the event of most types of minor or major surgery or dental work.
- Caring for the UK Addison’s patient: information for GPs
- Nursing the Addison’s patient: notes for nurses
The ADSHG is keen to support endocrine units who would like to run group face-to-face steroid education meetings with their patients – especially evening sessions open to family members, where they can practice the emergency injection technique. We can provide resources for patients and help to advertise the meeting to our membership. To find out more about how the ADSHG can help with steroid education meetings, contact our social meetings co-ordinator.
The ADSHG gets regular approaches from endocrinologists who are seeking assistance for their research. We are able to help in a number of different ways.
We have a small amount of medical grant funding available each year to fund projects that will advance good clinical practice in the diagnosis and management of Addison's disease. We are also able to help researchers recruit participants to take part in scientific studies.
Over recent years, the ADSHG has conducted several membership surveys to allow the views and experiences of our members in relation to their diagnosis, treatment and day-to-day management of Addison's to be better understood. Summaries of these survey results can be found on the our website.
Online resources for you
The ADSHG produces quarterly membership newsletters and NewsAlert emails. We are happy to add individual endocrinologists and endocrine nurses to the NewsAlert email distribution list, free of charge. These bulletins provide useful updates about any recent drug supply issues, either shortages, debranding or new generic drug producers, and can help you keep up to date with the views of the patient community. We can also arrange to send a print copy of the newsletter to UK and Ireland endocrine units, for endocrine nurses to use with their patients. If you would like to receive either of these, please contact us.
The ADSHG invites an endocrinologist with a research interest in Addison's and adrenal medicine to give its annual medical lecture, a series which has been held in London from 2002 onwards. This summer lecture is open to members of the Society for Endocrinology as well as to members of the ADSHG and their guests. You can view a set of presentation summaries from most past medical lectures online here.
There are also a number of external online resources that endocrinologists and other medical practitioners who are interested in finding out more about Addison’s disease and adrenal insufficiency can access free of charge.
1. Endobible is an online resource covering adrenal, thyroid, pituitary, metabolic and other endocrine symptoms. It is maintained by Dr Frankie Swords, Clinical Director at Norfolk and Norwich endocrine unit. Dr Swords is a member of the Addison's Clinical Advisory Panel.
2. Endocrine Abstracts provides searchable abstracts of presentations from key conferences in endocrinology, including those run by the UK’s Society for Endocrinology and the European Society of Endocrinology.
3. Endocrine Society Meeting Abstracts contains the abstracts of presentations given at the annual US Endocrine Society meeting.
The bibliography below covers a range of recent articles co-authored by members of the Addison's Clinical Advisory Panel and other leading adrenal specialists. Many are open access but some can only be obtained with institutional access or on a pay-per-view basis.
- Husebye et al. 2013 Consensus statement on the diagnosis, treatment and followup of patients with primary adrenal insufficiency, Journal of Internal Medicine 275 104-115
- Bensing S et al, Epidemiology, quality of life and complications of primary adrenal insufficiency: a review, European Journal of Endocrinology 175 R107-R116
- Nicolaides et al. 2013 Adrenal insufficiency, Endotext
- Charmandari et al. 2014 Adrenal insufficiency, Lancet 383 2152-2167
- Bancos et al. 2015 Diagnosis and management of adrenal insufficiency, Lancet 3 216-226
- Bornstein et al. 2016 Diagnosis and treatment of primary adrenal insufficiency, Journal of Clinical Endocrinology & Metabolism 101 364-389
- Quinkler et al. 2015 Mineralcorticoid substitution and monitoring in primary adrenal insufficiency, Best Practice & Research Clinical Endocrinology & Metabolism 29 17-24
- Quinkler et al. 2013 Adrenal cortical insufficiency: a life-threatening illness with multiple aetiologies, Deutsches Artzeblatt Int.110 882-888
- Allolio 2015 Extensive expertise in endocrinology: adrenal crisis, European Journal of Endocrinology 172 R115-R124
- Hahner et al. 2014 High incidence of adrenal crisis in educated patients with chronic adrenal insufficiency, Journal of Clinical Endocrinology & Metabolism 100 407-416
- Hahner et al. 2015 Timelines in the management of adrenal crisis - targets, limits and reality, Clinical Endocrinology 82 497-502
- Mitchell et al. 2014 Saving the lives of patients with adrenal insufficiency, Clinical Endocrinology 81 937-938
- Grossman et al. 2013 Therapy of endocrine disease: Perspectives on the management of adrenal insufficiency: clinical insights from across Europe, European Journal of Endocrinology 169 R165-R175
- Napier & Pearce 2014 Current and emerging therapies for Addison's disease, Current Opinion in Endocrinology, Diabetes & Obesity 21 147-153
- Johannson et al. 2015 Adrenal insufficiency: review of outcomes with current glucocorticoid therapy, Clinical Endocrinology 82 2-11
- Spasovski et al. 2014 Clinical practice guideline on diagnosis and management of hyponatremia, European Journal of Endocrinology 170 G1-G47
- Koetz et al. 2013 BclI polymorphism of the glucocorticoid receptor gene is associated with increased bone resorption in patients on glucocorticoid replacement therapy, Clinical Endocrinology 78 831-837
- Lebbe & Arlt 2013 What is the best diagnostic and therapeutic management strategy for an Addison's patient during pregnancy? Clinical Endocrinology 78 497-502
- Remde et al. 2016 Fertility and pregnancy in primary adrenal insufficiency in Germany, Hormone & Metabolic Research 48 306-311
- Napier & Pearce 2013 How should I approach standard endocrine evaluation in patients with coeliac disease?, Clinical Endocrinology 79 464-467
- Woods et al. 2015 Adrenal suppression in patients taking inhaled steroids is highly prevalent and management can be guided by morning cortisol, European Journal of Endocrinology 173 633-642
If you would like to recommend further articles for this reading list, please contact the website editorial team.
Photo icon courtesy of the Society for Endocrinology, taken at its BES 2015 conference.