medwireNews: Researchers find that teenagers with endocrine disorders often have gaps in their knowledge of their condition and how to manage it, making them poorly prepared for transition to adult clinic.
Laura de Graaff (Erasmus University Medical Centre, Rotterdam, the Netherlands) and co-workers surveyed 57 children, who were at least 15 years old and under the care of a paediatric endocrinologist, prior to their first appointment at the institute’s young adult clinic.
The most common conditions were pituitary hormone deficiencies, Klinefelter syndrome, 46,XY differences of sex development and congenital adrenal hyperplasia. Children with diabetes were seen in a dedicated clinic and therefore not included in this study.
“In general, patients scored well on all self-management items”, the researchers report in Endocrine Connections.
Nevertheless, they found “room for improvement” in certain areas.
For example, 14% of participants said they did not know the name of their condition, and a larger 28% did not correctly name or describe it in the survey.
Two-thirds of the study participants had never seen their specialist healthcare provider without a parent or carer present, 30% did not know how to get in touch with their clinic for help and 70% did not know how to get out-of-hours assistance.
Also, 19% did not know what to do with their medication if they experienced vomiting or diarrhoea, 23% were unaware of the potential side effects of their medication and 30% did not know how to react if they experienced such side effects.
Of the 17 glucocorticoid users, 18% were unaware of the need to adjust their dose when ill or undergoing surgery, and why such adjustment is necessary. Moreover, 35% did not carry an emergency hydrocortisone injection, and 47% did not wear a medical alert bracelet or other means of communicating their use of hydrocortisone in an emergency situation.
The researchers found that the participants’ self-management skills were “only weakly related to non-modifiable factors”, such as age and sex. “Therefore we recommend focusing on other factors to improve transition readiness”, they say.
The team advises interventions such as individualised and repeated provision of medical information, use of transition checklists to detect knowledge gaps, and education focused on the detected deficiencies.
“These measures require relatively little effort and can help [adolescents and young adults] bridge the gap between paediatric and adult endocrinology”, they conclude.
By Eleanor McDermid
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Endocr Connect 2021; doi:10.1530/EC-20-0304