Preferences for (Dis)Continuing Growth Hormone Treatment at Mid-Puberty in Patients with Transient Idiopathic Isolated Growth Hormone Deficiency: A Qualitative Analysis
Authors' conclusion
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.
Study context
- Population
- Patients with transient isolated idiopathic GHD (isolated idiopathic growth hormone deficiency (IIGHD)), their parents, healthcare professionals and organizational stakeholders25 interviews
- Participants
- 26 patients
- Comparison
- Preferences for continuing vs discontinuing recombinant human growth hormone (rhGH) at mid-puberty
- Outcome
- Stakeholder preferences for (dis)continuing rhGH
Methodological detailsinterviews, structured impact analysis tool with open-ended questions, Participants were asked to assume no clinical difference between (dis)continuing rhGH
- Interviews
- Structured impact analysis tool with open-ended questions
- Participants were asked to assume no clinical difference between (dis)continuing rhGH
Main finding
As reported in the abstract
- Patients and parents generally preferred rhGH continuation, mainly for reassurance and reduced uncertainty
- Patients valued discontinuation for reducing injection-related pain; continuation aligned with personal treatment goals
- Parents perceived rhGH continuation as reducing uncertainty
- Healthcare professionals and organizational stakeholders favored discontinuation (cost-effectiveness, reduced workload, ethical concerns about overtreatment); lower healthcare costs the main perceived advantage
Further findings
Facilitators and barriers for guideline revision
- Facilitators: positive communication, clear and timely information, sufficient implementation resources
- Barriers: old habits among clinicians, limited awareness of new evidence among stakeholders, lack of strong drivers for change
Original publication
Preferences for (Dis)Continuing Growth Hormone Treatment at Mid-Puberty in Patients with Transient Idiopathic Isolated Growth Hormone Deficiency: A Qualitative Analysis. Horm Res Paediatr. Published 28 April 2026. doi:10. 1159/ 000552013
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