Endocrine Abstracts

Background: Current guidelines recommend that susceptible patients should be tested and treated for AGHD. Still, it is not universally recognised as a distinct entity and reimbursement of GH replacement therapy is not available in some countries.

Aim: 1) to record current practice of AGHD management throughout Europe and benchmark it against existing guidelines, 2) to evaluate educational status of health care professionals.

Patients and Methods: Practicing endocrinologists were encouraged by ESE to complete an electronic questionnaire with aggregated data of AGHD patients diagnosed and/or treated in 2017–2018.

Results: Twenty-nine centres from 17 European countries and one from Australia participated with 2148 AGHD patients including 30% of childhood onset. The aetiology included non-functioning pituitary adenoma (26%), craniopharyngioma (14%) and genetic/congenital mid-line malformations (14%). Centres reported a maximum of 254 and a minimum of 9 patients, of which 71% were treated with GH. The percentage of treated patients ranged from 100% to 0 in countries, where GH treatment was not publically reimbursed at study entry; however, variability was observed between centres within the same country. Eighty-four percent of GH treatments were still on-going at the end of the study period. The main reasons for interruption were adverse events (22%, in 37% due to new cancer or tumour recurrence), administrative reasons (13%), lack of compliance (12%) and lack of positive effect (11%). Low adherence to guidelines was observed in many countries regarding diagnostic tests, cut-off values for GH, treatment initiation and/or transitioning. In 64%, no quality-of-life (QoL) questionnaire was reported. Requirements for treatment initiation beyond a biochemical test included, in some centres, patient compliance (72%), impaired QoL (45%),severe fatigability (35%), central obesity (10%), and age <65 years (10%). A common major cause of dissatisfaction was low AGHD awareness by non-endocrine health care professionals, and extent and quality of post-graduate AGHD curriculum training.

Conclusion: Despite available guidelines on AGHD since 2007 recommending GH replacement in adult hypopituitary patients, there are still countries in Europe where AGHD substitution therapy is not reimbursed. Knowledge among professionals and health administrators of adult GHD should be improved in order to optimize care of adults with hypopituitarism and GHD.