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Endocrine Abstracts (2023) 90 RC3.6 | DOI: 10.1530/endoabs.90.RC3.6

ECE2023 Rapid Communications Rapid Communications 3: Pituitary and Neuroendocrinology 1 (6 abstracts)

Discontinuation of long-term growth hormone treatment in adults with severe growth hormone deficiency: A United Kingdom web-based survey of endocrine practice

Sherwin Criseno 1,2,3 , Helena Gleeson 1,3 , Andrew Toogood 1,3 , Neil Gittoes 1,2,3 , Annie Topping 4,5 & Niki Karavitaki 1,2,3


1University Hospitals Birmingham NHS Foundation Trust, Endocrinology, Diabetes and Metabolism, Birmingham, United Kingdom; 2University of Birmingham, Institute of Metabolism and Systems Research, Birmingham, United Kingdom; 3Centre for Endocrinology, Diabetes and Metabolism, Birmingham Health Partners, Birmingham, United Kingdom; 4University Hospitals Birmingham NHS Foundation Trust, Nursing, Birmingham, United Kingdom; 5University of Birmingham, School of Nursing, Institute of Clinical Sciences, College of Medical and Dental Sciences, Birmingham, United Kingdom


Introduction: In adults, treatment of growth hormone deficiency (GHD) with daily recombinant human growth hormone (GH) injections has shown to improve many clinical features associated with GHD. Currently, many adults with GHD receive GH indefinitely, even when they fail to report any obvious benefits from this treatment. Additionally, evidence on the impact of discontinuing long-term GH therapy is limited. We conducted a survey of UK endocrine clinicians (doctors and specialist nurses) between 01/06/2022 and 31/08/2022 to understand the current practice of offering GH treatment discontinuation in adults with GHD.

Methods: A web-based multiple-choice questionnaire was developed and administrated by an online platform Survey Monkey®. The survey was distributed to the UK Society for Endocrinology membership. It consisted of 15 questions with sections on demographics, number of adult patients treated with GH, number of adult patients on GH replacement therapy for more than 5 years and the current practice/criteria used by the clinicians when offering a period of GH treatment discontinuation.

Results: 102 endocrine clinicians completed the survey, majority of which were from England (n=91, 89%). Of the 102 participants, 65 (33 endocrinologists and 32 specialist nurses) indicated active involvement in managing adult patients with GHD. Amongst the 65 respondents, 27.7% (n=18) were routinely offering a period of GH discontinuation to patients who have been on treatment for a long time. However, only 6% (n=4) confirmed that that a clinical guideline/protocol was in use to guide the practice of GH treatment discontinuation in adults. 29.2% of clinicians (n=19) supported that GH treatment discontinuation should be routinely offered to adult patients with GHD on long-term treatment and a further 60% (n=39) would consider treatment discontinuation for long-term users of GH treatment whilst 9.2% (n=6) indicated discontinuation should not be offered. At post-discontinuation review, majority of clinicians would complete IGF-1 level measurement (84.6%, n=55), quality of life assessment by AGHD questionnaire (89.2%, n=58) and signs and symptoms assessment (75.4%, n=49).

Conclusions: This first survey of GH treatment discontinuation practice in the UK highlights areas of uncertainty amongst endocrine clinicians regarding the appropriateness of offering GH treatment discontinuation in adults with GHD who have been on long-term therapy. Although a significant number of clinicians consider GH treatment discontinuation could be routinely offered to adult patients, this survey highlights the need for research to assess the effects of GH treatment discontinuation in adults, to guide the development of evidence-based recommendations to inform clinical practice.

Volume 90

25th European Congress of Endocrinology

Istanbul, Turkey
13 May 2023 - 16 May 2023

European Society of Endocrinology 

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