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Oregon Health & Sciences University
Chris Yedinak, DNP, FNP, MN, has no relevant conflicts of interest to report.
Nurses play a role in all phases of the life cycle of care for people with growth hormone deficiency (GHD), from assessment through diagnosis, treatment, and long-term follow-up. In this commentary, I discuss the day-to-day practicalities of managing this heterogeneous patient group and the skills and competences required of specialist endocrine nurses.
GHD can be congenital (resulting from genetic or structural abnormalities), acquired due to illness or injury to the hypothalamus and/or the pituitary gland, or idiopathic. In childhood, both congenital and idiopathic causes of short stature are treated with growth hormone replacement until adult height is achieved. Guidelines are published for the assessment and treatment of GHD in children by the Pediatric Endocrine Society.
Transition of Care
Adolescence is a time of transition both with respect to medical care (from pediatric to adult services) and in relation to the need for ongoing growth hormone replacement. Reassessment of GHD is recommended once adult height is achieved and growth plates are fused. At this time, and with normalization of GH levels, re-evaluation of the risks and benefits of continuing replacement therapy is recommended. The bid for self-determination and independence alongside the transition to college or employment raises adherence and other challenges. Self-injection, drug storage, and needle and syringe disposal pose a challenge and a potential stigma, particularly in certain settings, such as competitive intercollegiate sports. Patients and parents may need guidance and referral to resources to address these issues, and nurses who specialize in endocrine disorders can help connect them with the right kind of support.
In adulthood, GHD may be acquired or idiopathic and can result in significant disability. Symptoms include bone loss, poor muscle function, decreased strength and easy fatigue, difficulty with short-term memory, and alterations in body composition. Abnormalities in lipid profile, the development of insulin resistance, and weight gain can lead to higher cardiovascular risk. Both the Endocrine Society and the American Association of Clinical Endocrinology recognize adult GHD and have published guidelines for the assessment and treatment of GHD in adults.
GH Stimulation Testing
Provocative testing with growth hormone–stimulating agents is frequently needed to confirm GHD and often is performed by nurses. All tests require that the patient receive detailed preparation to ensure accuracy of the results. This includes an 8-hour fast, the placement of an IV catheter for interval blood draws (over 120 minutes), medication administration, and/or glucose rescue in the event of severe hypoglycemia. Testing is performed by administering either insulin, arginine, clonidine, L-dopa, or, more recently, macimorelin. The nurse frames patient expectations for the range of possible adverse events during testing (nausea, dizziness, dry mouth and a bad taste, headache) in a manner that avoids provoking anxiety while emphasizing available strategies to relieve discomfort, providing distraction and interventions as needed during the procedure.
GH replacement treatments, to date, have required daily SC injections until the welcome recent FDA approval of long-acting growth hormone replacement therapies for children and adults. Recombinant insulin-like growth factor 1 (IGF-1) also is approved for specific diagnoses. Pediatric nurses provide parent and child injection training and assessment of the child’s dexterity and readiness to transition to self-injections. Children are monitored for IGF-1 levels, height velocity, skeletal maturation, pituitary and adrenal response, hypoglycemia, and psychological adjustment.
Endocrine Nurses and GHD
The scope of practice for nurses involved in the care of people with GHD varies depending on credentials. In some countries and US states, doctoral and postmaster’s prepared nurses autonomously diagnose and treat or collaborate with physicians in the long-term care of patients with GHD. Registered nurses and licensed practical nurses participate in testing for GHD, insurance/treatment authorization, teaching parents and patients injection technique and medication administration, discussing adverse events, risks and benefits of treatment, monitoring of adverse events, and maintaining follow-up with patients.
Treatment outcomes are a synergy between evidence-based medical interventions and the patient’s ability to be consistent with therapy and follow-up. Best outcomes are more likely when there is shared decision-making and concordance between patients, family, and the medical team. The subsequent development of a care map or plan aims to achieve the best long-term outcomes, decrease the incidence of patients “lost to follow-up,” and minimize medication and medical time wastage. Nurses play a key role in plan development, execution, monitoring of outcomes, and plan adjustments.
How do nurses contribute to the care continuum for patients with GHD in your practice? Answer the polling question and join the conversation by posting a comment. For additional information and support for nurses who care for patients with GHD and other endocrine disorders, I encourage you to visit the Endocrine Nurses Society website.