Endocrine Abstracts

Introduction: There are currently no recommendations on the assessment, investigation and follow-up for girls presenting with concerns regarding puberty with background of complex disability who are non-weight bearing.

Aim: Service evaluation (assessment, investigation and follow-up) of girls presenting with any of Central Precocious Puberty (CPP), Early Puberty (EP), Delayed Puberty (DP) or period management with background of immobility in context of complex disability.

Methods: Girls identified from two New Paediatric Endocrine clinics, 2016-2019. Information including age, pubertal status, diagnoses, medication, nutrition and fracture history was collected.

Minimal standards of care were established:

• Height/length, weight and pubertal assessment

• Biochemical assessment of puberty (Follicle Stimulating Hormone [FSH], Luteinising Hormone [LH] and oestradiol)

• Bone age and pelvic ultrasound (CPP/EP/DP only)

• Assessment of bone health (Dual X-ray Absorptiometry [DXA] +/- lateral spine x-ray, vitamin D and bone profile)

Results: 13 girls were included with background of immobility secondary to cerebral palsy (n=6), spina bifida (n=5) or other developmental delay (n=2). Median age was 9.5years (range: 0.9-15.0). Assessment of height/length was recorded in 6/13(46.2%), weight in 9/13(69.2%) and pubertal assessment in 10/13(76.9%) girls. FSH, LH and oestradiol were measured in 10/13(76.9%) girls. Bone age was performed in 7/7(100%) and pelvic ultrasound in 5/7(71.4%) girls presenting with CPP/EP/DP. 5/13(38.5%) girls had an assessment of bone health with either DXA (n=2) or spinal x-ray (n=3). Vitamin D and bone profile was measured in 7/11(53.8%) girls. All 13 girls were followed up at least once with final diagnoses CPP (n=2), EP (n=4), DP (n=1) and period management (n=4). Treatment was commenced in 10/13(76.9%): 7/10(70%) received Gonadotropin Releasing Hormone analogue, 2/10(20%) supplemental oestrogen, 1/10(10%) Tranexamic acid and Mefenamic acid.

Conclusions: A leaflet titled “Managing Puberty in Young Girls with Physical and Learning Disabilities’ was produced to provide information to parents and carers. A proforma was created to guide assessment of puberty and bone health in complex disability.