ESE audit on management of adult growth hormone deficiency in clinical practice

Author:

Martel-Duguech Luciana1ORCID,Jorgensen Jens Otto L23,Korbonits Márta45,Johannsson Gudmundur67,Webb Susan M1ORCID,_ _,_ _,Adamidou F,Mintziori G,Arosio M,Giavoli C,Badiu C,Boschetti M,Ferone D,Ricci Bitti S,Brue T,Albarel F,Cannavo S,Martino G,Cotta O R,Carvalho D,Salazar D,Christ E,Debono M,Dusek T,García R,Ghigo E,Gasco V,Goth M I,Olah D,Kovacs L,Höybye C,Kocjan T,Mlekuš Kozamernik K,Kužma M,Medic Stojanoska M,Novak A,Miličević T,Pekic S,Milijic D,Perez Luis J,Pico A,Preda V,Raverot G,Borson-Chazot F,Rochira V,Monzani M L,Sandahl K,Tsagarakis S,Mitravela V,Zacharieva S,Zilatiene B,Verkauskiene R

Affiliation:

1. 1IIB-Sant Pau and Department of Endocrinology/Medicine, Hospital, Sant Pau, Universitat Autónoma de Barcelona, and Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBER-ER, Unit 747), ISCIII, Barcelona, Catalunya, Spain

2. 2Clinical Lead, Pituitary and Neuroendocrinology, European Society of Endocrinology, Starling House, Bristol, UK

3. 3Department of Clinical Medicine – The Department of Endocrinology and Diabetes, Arhus, Denmark

4. 4Adult Chair of the Endo-ERN Research & Science Workpackage and member of Endo-ERN Pituitary Thematic Group, London, UK

5. 5Endocrinology, William Harvey Research Institute, Barts and The London School of Medicine and Dentistry, Queen Mary University of London, Charterhouse Square, London, UK

6. 6Member of Endo-ERN Growth and Genetic Obesity Syndrome Thematic Group, Sahlgrenska Academy, University of Gothenburg, Göteborg, Sweden

7. 7Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Göteborg, Sweden

Abstract

Guidelines recommend adults with pituitary disease in whom GH therapy is contemplated, to be tested for GH deficiency (AGHD); however, clinical practice is not uniform. Aims (1) To record current practice of AGHD management throughout Europe and benchmark it against guidelines; (2) To evaluate educational status of healthcare professionals about AGHD. Design Online survey in endocrine centres throughout Europe. Patients and methods Endocrinologists voluntarily completed an electronic questionnaire regarding AGHD patients diagnosed or treated in 2017–2018. Results Twenty-eight centres from 17 European countries participated, including 2139 AGHD patients, 28% of childhood-onset GHD. Aetiology was most frequently non-functioning pituitary adenoma (26%), craniopharyngioma (13%) and genetic/congenital midline malformations (13%). Diagnosis of GHD was confirmed by a stimulation test in 52% (GHRH+arginine: 45%; insulin-tolerance: 42%, glucagon: 6%; GHRH alone and clonidine tests: 7%); in the remaining, ≥3 pituitary deficiencies and low serum IGF-I were diagnostic. Initial GH dose was lower in older patients, but only women <26 years were prescribed a higher dose than men; dose titration was based on normal serum IGF-I, tolerance and side-effects. In one country, AGHD treatment was not approved. Full public reimbursement was not available in four countries and only in childhood-onset GHD in another. AGHD awareness was low among non-endocrine professionals and healthcare administrators. Postgraduate AGHD curriculum training deserves being improved. Conclusion Despite guideline recommendations, GH replacement in AGHD is still not available or reimbursed in all European countries. Knowledge among professionals and health administrators needs improvement to optimise the care of adults with GHD.

Publisher

Bioscientifica

Subject

Endocrinology,General Medicine,Endocrinology, Diabetes and Metabolism

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