Preferences for (Dis)Continuing Growth Hormone Treatment at Mid-Puberty in Patients with Transient Idiopathic...

The SEENEZ GH trial found no difference in near adult height (NAH) between patients with isolated idiopathic growth hormone deficiency (IIGHD) who continued or discontinued recombinant human growth hormone (rhGH) at mid-puberty after a sufficient GH retest. These findings support revision of the current guideline to recommend rhGH discontinuation for patients with a sufficient mid-pubertal retest result. To enable successful adaptation, insight into stakeholder preferences, perceived (dis)advantages, and factors influencing guideline implementation is crucial.

A qualitative study was conducted based on 25 interviews involving 26 participants, including patients with transient IIGHD, their parents, healthcare professionals, and organizational stakeholders. Participants were asked to assume there was no clinical difference between (dis)continuing rhGH. Interviews combined a structured impact analysis tool with open-ended questions.

Patients and parents generally preferred rhGH continuation, mainly for reassurance and reduced uncertainty. Patients valued discontinuation for reducing injection-related pain, whereas continuation aligned with personal treatment goals. Parents perceived rhGH continuation as reducing uncertainty. Healthcare professionals and organizational stakeholders favored discontinuation, citing cost-effectiveness, reduced workload, and ethical concerns about overtreatment; lower healthcare costs were the main perceived advantage. Facilitators for guideline revision included positive communication, clear and timely information, and sufficient implementation resources. Barriers included old habits among clinicians, limited awareness of new evidence among stakeholders, and a lack of strong drivers for change.

Patients and parents favored continuing rhGH, whereas professionals and organizational stakeholders preferred discontinuation. Given comparable NAH outcomes after a sufficient mid-pubertal GH retest, successful guideline revision requires clear communication, adequate resources, and involvement of patients and parents.