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Medical ID jewelry often lacks clear instructions for adrenal insufficiency
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Only 4.8% of patients with adrenal insufficiency who use medical identification jewelry clearly indicate on their emblem the need for urgent parenteral hydrocortisone in the event of an adrenal crisis, potentially jeopardizing the ability to receive proper assistance in an emergency, according to a cross-sectional analysis published in Clinical Endocrinology.
“Although the use of medical identification jewelry is recommended for patients with adrenal insufficiency to assist in the prevention and treatment of an adrenal crisis, the results of this study indicate that this advice is taken up by only a modest proportion of patients,” R. Louise Rushworth, MBBS, PhD, FAFPHM, an adjunct professor and medical epidemiologist at the School of Medicine, Sydney, and the University of Notre Dame Australia, told Endocrine Today. “Patients with secondary adrenal insufficiency have a lower uptake than those with primary adrenal insufficiency despite their risk of an adrenal crisis approaching that people with primary adrenal insufficiency.”
In a cross-sectional analysis, Rushworth and colleagues analyzed data from 1,955 patients with adrenal insufficiency aged at least 20 years with an active subscription to a large medical jewelry provider (MedicAlert) as of September 2018. The researchers calculated subscription rates by adrenal insufficiency subtype, geographic area, age and sex using relevant population data.
The overall subscription rate was 105.79 per million, representing approximately one-third of the estimated 300 per million patients with adrenal insufficiency in the population, according to researchers. Among subscribers, 57.4% had primary adrenal insufficiency and 15.1% had a diagnosis of congenital adrenal hyperplasia. The overall subscription rate for patients with primary adrenal insufficiency was 61.72 per million, or 61.7% of the approximately 100 per million patients with primary adrenal insufficiency in the Australian population, according to researchers.
Researchers observed considerable differences in subscription rates based on geographic region, patient age and sex. Western Australia had an overall subscription rate (247 per million) that was more than four times higher than Victoria, the state with the lowest subscription rate (60.87 per million; P < .0001). Patients aged 60 to 69 years had the highest subscription rate (165.15 per million), whereas patients aged 30 to 39 years had the lowest rate (47.23 per million; P < .001). Additionally, most subscribers reporting primary adrenal insufficiency were women (69%).
The researchers found that hydrocortisone was the most common replacement therapy (41.6%), followed by cortisone acetate (25.6%) and prednisone (16.3%). They noted that few patients — only 4.8% — clearly mentioned the need for urgent parenteral hydrocortisone in the event of severe illness.
Rushworth said most patients who used medical identification jewelry did not have clear emergency instructions inscribed on the emblem, and that this may lead to delays in administration of hydrocortisone in an emergency.
“Guidelines recommend that patients with adrenal insufficiency who are at risk for adrenal crisis should wear medical identification jewelry as a form of nonverbal communication in an emergency,” Rushworth said. “These should be recommended by the treating doctor, and adherence should be encouraged and reviewed regularly. The jewelry should be inscribed with clear instructions for emergency treatment, for example: ‘Adrenal insufficiency. Give IM 100 mg hydrocortisone.’” – by Regina Schaffer
For more information:
R. Louise Rushworth, MBBS, PhD, FAFPHM, can be reached at the University of Notre Dame Australia, 32 Mouat St., Fremantle WA 6160, Australia; email: louise.rushworth@nd.edu.au.
Disclosures: The authors report no relevant financial disclosures.
Perspective
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Saleh Aldasouqi, MD, FACE, ECNU
This study by Rushworth and colleagues is an eye opener to clinicians; it is surprising that the rate of wearing medical alerts is this low among patients with adrenal insufficiency.
The reason for the low rate of adherence to wearing medical alert jewelry is multifactorial, as elucidated in the study. One factor is embarrassment (or the fear of stigma) related to health conditions. The study reports that adherence to wearing the jewelry can be improved by education and support; however, a major factor is perhaps the inadequate education by health care providers. While this issue has not been well studied, our own anecdotal observation has suggested this. In our endocrine clinics at Michigan State University, we have observed a low rate of clear instructions for patients with adrenal insufficiency in regard to the recommendation to wear medical alert jewelry.
Since the rate of wearing medical alert jewelry is so low in adrenal insufficiency, it is reasonable to propose alternatives to jewelry as medical alert tools. Nicolas Kluger, MD, PhD, and I have studied the phenomenon of medical alert tattoos (Kluger N; Aldasouqi S, et al. Presse Med. 2013; doi:10.1016/j.lpm.2012.04.009.).
Our research focused on diabetes tattoos, but it can also be applicable to patients with adrenal insufficiency, because the concept is the same. This alternative tool becomes more meaningful when we notice that Rushworth’s study showed that the rate of wearing medical alert jewelry is lowest in the younger population; it is conceivable that this age group may be more open to the tattoo option.
In case reports, case series and review articles that we published, we observed that patients who opted for medical alert tattoos stated that their motivations largely stemmed from the fact that they may forget to wear the medical alert jewelry as well as the accruing costs of jewelry, which are not durable. Another concern that I can add which argues for the advantages of medical alert tattooing compared to jewelry is that in the case of traffic accidents, it is possible that jewelry may get broken or detached from the body. We called for standardization of medical alert tattoos to be most helpful to EMS personnel. We also called for proper licensing of tattooing in view of potential complications.
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