References

An integrated career and competency framework for children and young people's endocrine nurse specialists. 2018. https://tinyurl.com/yc9gklwz

Collin J, Whitehead A, Walker J Educating children and families about growth hormone deficiency and its management: part 2. Nurs Child Young People. 2016; 28:(2)30-36 https://doi.org/10.7748/ncyp.28.2.30.s23

Facilitating the adherence journey of children, adolescents, and adults on long-term growth hormone therapy

22 October 2020
Volume 29 · Issue 19

Abstract

Growth hormone deficiency in children and adolescents is treated with recombinant growth hormone injections, with the aim of helping patients reach a final height that falls within their genetically predicted adult height. While this treatment is very successful, overcoming issues of patient adherence is a challenge at each stage of the treatment journey, from early childhood to adulthood. An advisory board of senior endocrine nurses convened to discuss what strategies and tools work well in achieving adherence, and the best practices they identified—including the key strategies of choice, information, teamwork, and support—were presented at the 2016 meeting of The Endocrine Society. The advisers agreed that key steps to improve adherence include: patient/carer-centric endocrine nursing services, good-quality education and support, patient autonomy (where possible), broader treatment choice (in terms of device and self-injection), optimal follow-up from childhood to adulthood, and sharing of best practices.

Growth hormone is a well-established treatment for a variety of growth disorders including poor growth due to growth hormone deficiency, Turner syndrome, short stature in children born small for gestational age, Prader-Willi syndrome, and chronic renal insufficiency (Fisher and Acerini, 2013). In childhood and adolescence, the aim of growth hormone therapy is to increase height velocity to enable patients to reach a final adult height within their genetically predicted range. Growth hormone is also licensed for use in adults with growth hormone deficiency, a condition associated with reduced quality of life and energy levels, altered body composition, and reduced bone mineral density, among others (National Institute for Health and Care Excellence (NICE), 2003; 2010). Growth hormone treatment therefore often involves regular growth hormone injections for a number of years and, in some cases, for life.

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