ESPE Abstracts (2023) 97 P1-343

ESPE2023 Poster Category 1 Pituitary, Neuroendocrinology and Puberty (73 abstracts)

Facilitating Transition of Care Into Adulthood in Brain Cancer Survivors With Acquired Pediatric Growth Hormone Deficiency: Insights From an Advisory Board

Craig Alter 1 , Margaret Boguszewski 2 , David Clemmons 3 , Georgiana Dobri 4 , Mitchell Geffner 5 , Nicky Kelepouris 6 , Bradley Miller 7 , Rich Oh 6 , Heidi Shea 8 & Kevin Yuen 9


1Children’s Hospital of Philadelphia, Philadelphia, USA. 2Federal University of Paraná, Curitiba, Brazil. 3University of North Carolina School of Medicine, Chapel Hill, USA. 4Weill Cornell Medicine, New York, USA. 5Keck School of Medicine, University of Southern California, Children’s Hospital Los Angeles, Los Angeles, USA. 6Novo Nordisk, Inc., Plainsboro, USA. 7University of Minnesota Medical School, M Health Fairview Masonic Children's Hospital, Minneapolis, USA. 8Children’s Medical Center Dallas, Dallas, USA. 9Barrow Pituitary Center, Barrow Neurological Institute, University of Arizona College of Medicine and Creighton School of Medicine, Phoenix, USA


Childhood cancer survivors (CCS), particularly brain cancer survivors, are at risk of developing growth hormone deficiency (GHD) due to hypothalamic-pituitary damage from direct tumor mass effects or treatment. Optimization of testing, long-term treatment, and monitoring during care transition from pediatric to adult endocrinology providers remain challenging. A group of endocrinology experts convened to discuss these challenges, the risks and benefits of GH therapy in CCS with GHD, and the importance of increasing collaboration between pediatric and adult care teams to ensure seamless continuity of care during this period. A panel of pediatric and adult endocrinologists convened in May 2022 for an advisory board meeting (sponsored by Novo Nordisk Inc.) to discuss ongoing challenges and provide strategies for optimal management of CCS with GHD. The advisors believe that some oncologists and adult endocrinologists remain concerned about continuing long-term GH therapy in CCS into adulthood given the possibility that GH therapy may facilitate cancer re-growth/spread. Additionally, patients and their families may lack understanding of the metabolic benefits of GH treatment at all ages. Other barriers to managing the transition phase may include loss of insurance coverage as patients age out of their parents’ plans and long waiting lists for endocrinology appointments leading to patient dropout. Advisors believe that daily GH treatment is well accepted by patients experiencing fatigue, weight gain, and neurocognitive issues, but patients with no discernible symptomatic improvement may have adherence issues. Advisors recommend creating a summary of research findings (tailored to different educational levels) regarding risks and benefits of GH treatment in cancer survivors to be dispensed to oncologists, endocrinologists, patients, and families. Increased collaboration between pediatric and adult care teams is key to facilitating transition of care. Advisors also suggested highlighting benefits and safety of GH treatment for insurance companies to potentially increase coverage. Lack of communication and understanding seem to be the greatest barriers in continuation of GH therapy during transition of CCS to adult care. Increased education for oncologists, endocrinologists, patients, families, and insurance companies may facilitate acceptance of GH treatment and better treatment decisions for patients.

Volume 97

61st Annual ESPE (ESPE 2023)

The Hague, Netherlands
21 Sep 2023 - 23 Sep 2023

European Society for Paediatric Endocrinology 

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