Background: Adrenal insufficiency (AI) is a rare disorder in the paediatric population. Patients are at risk of an adrenal crisis (AC), which comprises hypotension, acute abdominal symptoms, reduced consciousness, hypoglycaemia, hyperkalaemia and hyponatremia. Immediate administration of parenteral hydrocortisone is essential to prevent AC progression but delays may occur when health attendants are unaware of the underlying AI diagnosis. Medical jewellery is a non-verbal way of communicating an AI diagnosis in an emergency. It provides medical information on a recognisable emblem attached to a bracelet or necklace and additional information is available via telephone. While use of such a service is recommended, the extent which it is adopted by patients is unknown.
Aim: The aim of this study was to assess the use of medical jewellery among patients aged 25 years and under with AI in Australia.
Methods: Data on the age, sex, diagnosis and treatment for each eligible subscriber were extracted from the largest medical jewellery database on 17 September 2018. Subscription rates were calculated using 2017 Australian population data.
Results: There were 666 patients with AI in the database but only 358 (53.8%) had an active (up to date) subscription, corresponding to a subscription rate of 43.7/million or approximately 14.6% of the estimated patient population. The majority (66.5%, n=238) had primary AI; 82 (22.9%) had secondary AI; and 38 (10.6%) patients could not be classified. Congenital adrenal hyperplasia (CAH) was the most frequent diagnosis (n=153, (42.7%)), corresponding to a subscription rate of 18.7/million or 28.9% of the estimated number of patients with CAH. The mean age of subscribers was 15.9 (SD=5.8) years, with only 18 (5%) patients aged under 5 years. More females (n=199, 55.9%) than males were active subscribers and subscription rates differed significantly by geographic area. Inactive (lapsed) subscriptions increased with age and were highest in the 20-25 year age group.
Discussion: This is the first study examining the uptake and maintenance of a medical jewellery subscription service in young people with AI. Utilisation was lower than recommended. Uptake increased with age but was associated with higher levels of lapsed subscriptions. Females used jewellery more than males. Geographic differences suggest that local factors also influence subscribing. High levels of lapsed subscriptions indicate the need for ongoing reinforcement of AC preventive education.
19 - 21 Sep 2019
European Society for Paediatric Endocrinology