Joeri Vliegenthart1, Iris Vernooij1, Eric van der Hijden2, Stefan Schuiling3, Edmond Rings4, Erica van den Akker1, Danielle van der Kaay1, on behalf of the SEENEZ Growth Hormone Consortium Other members of the SEENEZ Growth Hormone Consortium include B. Bakker, A. M. Boot, C. de Bruin, M. Finken, J. C. van der Heyden, A. C. S. Hokken-Koelega, H. J. van der Kamp, E. G. van Mil, T. C. J. Sas, D. A. Schott, P. van Setten, S. Straetemans, V. van Tellingen, R. N. H. Touwslager, A. S. P. van Trotsenburg, P. G. Voorhoeve, J.M. Wit5
(1) Pediatric endocrinology, Erasmus University Medical Centre, Sophia Children’s Hospital, Rotterdam, Netherlands.
(2) Talma Instituut, Faculty of Social Sciences, VU University Medical Center, Amsterdam, Netherlands.
(3) Zorgevaluatie en Gepast Gebruik, Diemen, Netherlands.
(4) Pediatrics, Erasmus University Medical Centre, Sophia Children’s Hospital, Rotterdam, Netherlands.
(5) .
Background
The prospective SEENEZ GH trial found no significant difference in near adult height (NAH) between isolated idiopathic growth hormone deficiency (IIGHD) patients who continued or discontinued recombinant human growth hormone (rhGH) at mid-puberty after a sufficient GH retest. Understanding stakeholder preferences is key for guideline adaptation.AimTo explore perceived advantages and disadvantages of discontinuing rhGH and stakeholder preferences, and to identify facilitators and barriers for guideline revision.
Methods
In this qualitative study 25 interviews with 26 participants were conducted (patients, caregivers, healthcare professionals, organizational staff). Interviews were transcribed and coded for analysis. Each participant completed an impact analysis tool. Open-ended questions were asked to gain additional insights. Responses from the impact analysis tool were analyzed to determine individual preferences. Data from these assessments were pooled to identify overall trends within each group.
Results
Patients and caregivers favored continuation for reassurance and reduced uncertainty. Healthcare professionals and organizational stakeholders preferred discontinuation, citing cost-effectiveness, reduced workload, and ethical concerns regarding overtreatment. Facilitators for guideline change include clear communication, timely information, and adequate resources (time and money). Barriers include old habits among doctors, limited knowledge of new evidence, and lack of a driving force for change.
Conclusions
Within the context of comparable NAH between transient IIGHD patients who continue or discontinue rhGH treatment, patients and parents/caregivers prefer continuation of rhGH treatment, whereas healthcare professionals and employees from healthcare organizations prefer treatment discontinuation. A guideline revision requires clear and timely information, adequate resources and key drivers to help with (de)implementation.