ESPE2022 Poster Category 2 Growth and Syndromes (44 abstracts)
1Division of Pediatric Endocrinology, Erasmus Medical Center (MC) Sophia Children’s Hospital, University Medical Center, Rotterdam, Netherlands; 2Department of Pediatrics, Albert Schweitzer Hospital, Dordrecht, Netherlands; 3Dutch Growth Research Foundation, Rotterdam, Netherlands
Introduction: Growth hormone (GH) treatment is essential for growth in children with GH deficiency. Also short children born small for gestational age (SGA), and children with syndromes like Turner Syndrome (TS), Noonan Syndrome (NS) and Silver Russel Syndrome (SRS) can benefit from GH treatment. For children with needle anxiety GH delivered by a jet device can be a solution for the daily subcutaneous treatment for many years. In 2021, a global recall of the only GH jet delivered device available was initiated.
Method: After the global recall 95 children from our pediatric endocrine clinic were forced to discontinue GH treatment with the jet delivered device. All parents and children received a video instruction on how to use the new device including written pedagogical instructions. If necessary, parents received telephone guidance afterwards or were invited to the outpatient clinic. Data on age, diagnosis and intervention to switch to a device with needle was collected.
Results: Ninety-five patients between 4 and 18 years of age used a jet delivered GH device. The median (range) age of the patients was 12 (4-18) years. Eighty-six (91%) patients switched to a GH device with needle. In fifty-five (64%) patients, a video instruction at home followed by telephone guidance was sufficient for an uncomplicated switch. An outpatient clinic appointment for pedagogical guidance was needed for 6/18 of the short children born SGA, 6/23 of the girls with TS, 4/38 of the children with GH deficiency, 1 patient with NS, 1 patient with SHOX deficiency and 1 SRS patient. In 12 children (14%) the intervention was unknown. Six children (6.3 %) with a median (range) age of 14 (12-17) years discontinued GH treatment at own initiative and didn’t switch to a new device. Another three patients were advised to stop GH treatment because they almost reached adult height (n=2) or because of increased risk developing a malignancy (n=1) (3.2%).
Conclusion: Most patients that used a jet delivered GH device continued GH treatment with a device with needle after the global recall. In the majority of children (64%), a video instruction at home followed by telephone guidance was sufficient for an uncomplicated switch to a device with needle. Twenty-one percent of patients needed pedagogical guidance at the outpatient clinic. The intervention was unknown in 14% of patients. Patient tailored specialized pedagogical guidance needs to be offered to those children with or being at risk to develop needle anxiety.