Action For Adrenal Disease

 

Watch online Saturday April 16 at 1:00 PM eastern at https://plus.google.com/events/cpjbd8celcbfgngp8und662s198?hl=en

Secondary Adrenal Insufficiency and Addison's Disease can be deadly, mostly because of the lack of education and awareness. We have lost too many and need to be proactive in preventing unnecessary deaths! Join us as we educate on what these diseases are, how easily they can become deadly and preventive measures we can all take to help this community. Brought to you by the National Adrenal Disease Foundation, with speakers who have personal experience with these diseases.

Our program will include:

Senior Administrator Nichole Klute Rushton••• of the Addison’s Disease Support Group (https://www.facebook.com/groups/addisons.support/) on Facebook, will speak in detail about the unfortunate adrenal insufficient patients who have tragically passed, reminding us that the danger of loss of life is a reality for every person with adrenal insufficiency who doesn’t receive the vital hormones they need

Administrator Debby Hunter ••• of the Living With Addison's Disease Support on Facebook (https://www.facebook.com/groups/LivingWithAddisonsDisease/) who will give us tips on how we can approach our local emergency facilities and hospitals with information about adrenal insufficiency and its care in a crisis situation. She will also share her own personal experience with going through an adrenal crisis.

Deputy Sheriff Chris Spires••• who will speak on life as the husband of an Addison’s disease patient, and share with us how the law enforcement community views adrenal insufficient patients

Melanie Wong ••• National Adrenal Disease Foundation (http://www.NADF.us) Executive Director, who will speak about the recent tragic losses, and the vital importance of reminding the medical community about adrenal insufficiency, as well as NADF’s latest project to get NADF Adrenal Crisis Care posters displayed in every emergency room facility in the United States.

Adrenal Insufficiency Patients Require More Education on Adrenal Crisis

Greater efforts to educate patients with adrenal insufficiency and their families about prevention of adrenal crisis may be necessary, according to data presented at the American Association of Clinical Endocrinologists (AACE) 24th Annual Scientific & Clinical Congress.

Additionally, the researchers, who looked at patients treated for adrenal insufficiency, found that many are not being adequately trained or equipped to deal with an adrenal crisis.

“These patients can crash and we are not doing enough to help prevent problems,” study investigator Nitika Malhotra, MD, endocrinologist in Lansing, Michigan, said. “We did this study because we think this is a big problem.”

Malhotra, who presented the study findings at the meeting, explained that patients with adrenal insufficiency are at risk for developing adrenal crisis, and it is now estimated that 8% of patients with adrenal insufficiency are hospitalized for adrenal crisis each year.

The problem, according to Malhotra, is that far too many patients are failing to receive crises prevention education. Moreover, they are not receiving emergency glucocorticoid kits.

“All of the families need to be taught and that is not happening,” Malhotra said in an interview with Endocrinology Advisor. “It will reduce the morbidity and mortality and the hospitalization, and it may improve the quality of life of patients too.”

For their study, Malhotra and her colleagues collected data from patients with adrenal insufficiency who were seen at a single institution between March 2009 and March 2014.

The investigators conducted a retrospective chart review and examined age, gender, causes of adrenal insufficiency, glucocorticoid dose, and monitoring for hyponatremia and hyperkalemia. They also looked at postural blood pressure, crises prevention education for glucocorticoid dose adjustments during stress, and whether patients had a Medic Alert ID or a parenteral glucocorticoid kit. 

The researchers identified 85 patients (29 males and 56 females) with adrenal insufficiency. Of these patients, 33 patients had primary adrenal insufficiency (38.8%) and 52 had secondary adrenal insufficiency (61.2%). The mean age of the patients was 55.8 years.

Among the 85 patients, 23 (27%) had postural blood pressures checked — five of whom were positive (21.7%). Seventy-seven patients (90.6%) were monitored for electrolytes, and 41 patients (48.2%) were on steroid doses above 20 mg per day.  

However, the researchers found that only 57 patients (67.1%) had received steroid dose adjustment instructions. In addition, only 29 patients (34.1%) had a Medic Alert ID, and only 17 patients (20%) were setup with emergency parenteral glucocorticoid kits.

Even though this study has many inherent limitations, Malhotra said, it appears that the preventive strategies for adrenal crisis in patients with adrenal insufficiency are not being consistently followed.

Patient education is paramount for achieving a successful prevention strategy for adrenal crisis, and endocrinologists have a responsibility to make sure that all patients with adrenal insufficiency have a Medic Alert ID and access to emergency glucocorticoid kits, according to Malhotra.

Furthermore, she said families should receive adequate education about parenteral steroid administration and steroid dose adjustments in stressful situations.

At her institution, Malhotra said, endocrinologists are introducing an automated electronic alert in their electronic medical records to determine if this electronic prompt will improve adherence.

Reference

1. Malhotra N et al. Abstract #102. Presented at: American Association of Clinical Endocrinologists (AACE) 24th Annual Scientific & Clinical Congress; May 13-17, 2015; Nashville, Tenn.

From http://www.endocrinologyadvisor.com/aace-2015/adrenal-crisis-in-adrenal-insufficiency/article/415123/

Severe fatigue, decreased physical activity in patients with Addison’s disease

van der Valk ES, et al. Clin Endocrinol. 2016;doi:10.1111/cen.13059.

Dutch adults with primary adrenal insufficiency reported abnormal or severe fatigue, reduced physical activity and significantly reduced quality of life vs. healthy controls, according to recent survey results.

In a cross-sectional study, Eline S. van der Valk, MD, of Amphia Hospital in Breda, the Netherlands, and colleagues also found that patients with Addison’s disease reported physical activity levels that were significantly lower than those reported by other Dutch chronically ill patients.

“The clinical relevance of the impaired [quality of life] and increased fatigue found in our study is supported by the size of the differences in scores and the restriction in physical activity in patients with [Addison’s disease], an important activity in daily life,” the researchers wrote. “Physical inactivity could be very detrimental in [Addison’s disease] because the prevalence of other cardiovascular risk factors is already increased, and it has been demonstrated that patients with [Addison’s disease] have an up to twofold increased mortality rate from [CVDs].”

Researchers analyzed survey data from 328 Dutch adults with Addison’s disease on stable glucocorticoid replacement therapy with hydrocortisone or cortisone acetate (mean age, 53 years; 223 women; mean duration of disease after diagnosis, 15.6 years). Participants attended outpatient clinics at University Medical Center Utrecht and Radboud University Nijmegen Medical Centre, or were members of the Dutch Association of Addison and Cushing Patients. They completed general and health-related quality of life (Short Form 36; Checklist Individual Strength) and physical activity questionnaires. Scores were compared with a random sample of 1,718 adults who completed a Dutch National Health Survey (controls).

Within the cohort, 53% of participants had isolated Addison’s disease; 74.1% received hydrocortisone therapy; 25.9% received cortisone acetate therapy; 87.2% received fludrocortisone therapy; and 23.2% received dehydroepiandrosterone replacement therapy.

Researchers found that 45.7% of participants with Addison’s disease met the standard of physical activity (Dutch standard of healthy physical exercise, defined as moderately intensive physical exercise for 30 minutes daily 5 days per week; “Fitnorm,” defined as 20 minutes of intensive physical exercise at least 3 days per week) vs. 67.8% of controls (P < .01). Researchers found 61% of participants with Addison’s disease reported abnormal fatigue, and 43% reported severe fatigue. Mean fatigue scores were significantly higher vs. controls (mean difference, 32.6; 95% CI, 24-41).

In both men and women with Addison’s disease, researchers found that quality of life scores in all component summaries were significantly decreased compared with controls, particularly in participants aged 65 years and younger. – by Regina Schaffer

Disclosure: The researchers report no relevant financial disclosures.

From http://www.healio.com/endocrinology/adrenal/news/online/%7Ba8914384-d40e-41ab-aa1c-134d856d2edd%7D/severe-fatigue-decreased-physical-activity-in-patients-with-addisons-disease