SFEBES2022 Poster Presentations Adrenal and Cardiovascular (66 abstracts)
Bone health optimisation and patient education in adult congenital adrenal hyperplasia patients
Sajnin Zaman 1 , Afifa Riaz 1 , Emma Bremner 1 , Marry Barrowcliffe 1 , Carole Robinson 1 , Jawahar Pathi 1 , Shailesh Gohil 1 , Ragini Bhake 1 , Miles J Levy 1,2 & Narendra L Reddy 1,2
1University Hospitals of Leicester NHS Trust, Leicester, United Kingdom; 2University of Leicester, Leicester, United Kingdom
Introduction: Decreased bone mineral density (BMD) is a concern in Congenital adrenal hyperplasia (CAH) given life-long glucocorticoid treatment. We undertook a quality improvement project (QIP) to optimise bone health for all adult CAH patients under our care in line with Endocrine Society CAH Guidelines.
Method: Retrospective case notes and electronic records’ review was undertaken to identify CAH patients in University Hospitals of Leicester (UHL). Following actions were undertaken as part of QIP: 1) CAH education (website information, CAH leaflet) 2) Steroid safety education (Glucocorticoids stress dosing, emergency Hydrocortisone, sick day rules, medic alert bracelet, Emergency steroid card) 3) CAH biochemistry 4) Bone health assessment (Bone profile, Vitamin D, DEXA) 5) Osteoporosis education (smoking cessation, exercise, Vitamin D) 6) Quality-of-life assessment (SF-36 questionnaire) 7) FRAX tool patient questionnaire to estimate fracture risk. 8) Genital examination for testicular adrenal rest tumors (TART)
Results: n=92 CAH patients treated in UHL until June 2022; n=76 patients (46F;20M) information was available; n=41 patients currently under follow-up. Mean age: 39 years; Mean BMI 28.1 kg/m2. 33/41 (80%) had prior DEXA but only 42% in preceding 3 years: 16% treated osteoporosis, 25% osteopenia, 59% normal BMD. Of the invited 41 patients to attend CAH education clinic, 15/41 (11F: 4M) have attended so far. 12/41 (30%) are on supra-physiological glucocorticoid dose. 4/11 females menopausal; 3/11 primary amenorrhea. 3/15 had fragility. 12/15 (80%) are on Calcium and vitamin D supplements, rest were commenced on Vitamin D replenishment regimen. All 15 of them admitted to be compliant with steroids as evidenced by stable androgens.
Learning points: 1. Bone health evaluation, treatment & patient education is a vital aspect of CAH management
2. DEXA scan should be undertaken every 3 years
3. Preventive measures for Glucocorticoid-induced osteoporosis should be educated.
4. Optimising steroid dose should be considered.
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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