Insights from an advisory board: Facilitating transition of care into adulthood in brain cancer survivors with acquired pediatric growth hormone deficiency

• Published in: Growth hormone & IGF research 2024-02, Vol.74, p.101573, Article 101573
• Main Authors: Alter, Craig, Boguszewski, Margaret, Clemmons, David, Dobri, Georgiana A., Geffner, Mitchell E., Kelepouris, Nicky, Miller, Bradley S., Oh, Richard, Shea, Heidi, Yuen, Kevin C.J.
• Format: Article
• Language: English
• Subjects: Childhood cancer survivor; Endocrine complications of cancer; Growth hormone deficiency; Growth hormone treatment; Long-term follow-up; Transition care
• ISSN: 1096-6374; 1532-2238; 1532-2238
• DOI: 10.1016/j.ghir.2024.101573

Children with growth hormone deficiency (GHD) face multiple challenges that can negatively impact the transition from pediatric to adult endocrinology care. For children with GHD resulting from brain cancer or its treatment, the involvement of oncology care providers and possible disease-related comorbidities add further complexity to this transition. An advisory board of pediatric and adult endocrinologists was convened to help better understand the unique challenges faced by childhood cancer survivors with GHD, and discuss recommendations to optimize continuity of care as these patients proceed to adulthood. Topics included the benefits and risks of growth hormone (GH) therapy in cancer survivors, the importance of initiating GH replacement therapy early in the patient's journey and continuing into adulthood, and the obstacles that can limit an effective transition to adult care for these patients. Some identified obstacles included the need to prioritize cancer treatment over treatment for GHD, a lack of patient and oncologist knowledge about the full range of benefits provided by long-term GH administration, concerns about tumor recurrence risk in cancer survivors receiving GH treatment, and suboptimal communication and coordination (e.g., referrals) between care providers, all of which could potentially result in treatment gaps or even complete loss of follow-up during the care transition. Advisors provided recommendations for increasing education for patients and care providers and improving coordination between treatment team members, both of which are intended to help improve continuity of care to maximize the health benefits of GH administration during the critical period when childhood cancer survivors transition into adulthood. •Effective transition from pediatric to adult endocrinology care is challenging.•Patients transitioning from childhood to adulthood often experience a care gap.•Patients with cancer-related growth hormone deficiency face even greater challenges.•Endocrinologists met to discuss the optimal management of childhood cancer survivors.•Collaborative, multidisciplinary approaches to ensure continuity of care are needed.