medwireNews: Dutch researchers have identified key logistic failures that may lead to adolescents with endocrine disorders failing to transition successfully from paediatric to adult tertiary care.
“We provide practical recommendations for patients, paediatric and adult endocrinologists that require relatively little effort and may prevent these dropouts”, say Laura de Graaff (Erasmus University Medical Center, Rotterdam) and colleagues.
The team reviewed medical records for 387 patients older than 15 years of age who were attending the paediatric endocrine outpatient clinic at the Erasmus University Medical Centre in 2013–2014.
Altogether 131 of the adolescents (58% female) were due to transition to adult care at the same hospital at a mean age of 17.7 years. Among patients who attended a first adult care appointment, 11% missed one or two appointments and 4% three or more appointments, while 25% of patients did not attend an adult care appointment within 2 years of their last paediatric clinic visit.
Girls were slightly less likely to attend their first adult care appointment than boys (73 vs 78%) and younger adolescents were less likely than older individuals to attend (60% of patients <16 years vs 22% of 16–18-year-olds and 29% of over 18-year-olds).
The researchers also note that patients who dropped out appeared more likely to have gonadal disorders and cancer, and less likely to have pituitary disorders, than patients who transitioned to adult care but emphasize that “patient numbers were too small to draw any firm conclusions.”
Just one of the 131 transition patients required a hospital stay and/or emergency care for their endocrine condition in the 2 years after transitioning, perhaps because “sub-optimal management” of many chronic endocrine conditions does not require this type of care, the authors observe.
The affected patient had more than two hospital stays for Addison’s disease after not observing hydrocortisone stress instructions and experiencing adrenal crises during stressful events.
Investigating the reason why the 33 patients did not complete their planned transition to adult care, de Graaff et al found that 73% of them had not received an invitation for an adult care appointment. Of these 24 patients, 33% did not have a “ready for transfer” note in their medical records, 33% had a “ready for transfer” note but a letter of referral to the adult endocrinology department was not sent, and in 29% of cases the letter was sent but an appointment was not made by the adult care department.
“This strongly [suggests] that logistic failures are responsible for a large part of the dropouts”, they write, but admit that psychosocial aspects of transition are also “important”.
Writing in Endocrine Connections, the researchers say that in 2017 a young adult clinic was launched at the Erasmus University Medical Centre, allowing paediatric and adult endocrinologists to meet with the patients and caregivers at time of transfer, with a transition coordinator employed to remain in contact with the patient and prevent loss of follow-up.
The team also advises that to prevent logistic issues leading to adolescents dropping out of care, paediatric endocrinologists should call patients within a few months of their final visit to check that an adult care appointment has been made; adult endocrinologists should review letters from paediatric endocrinologists to check for required actions; and that patients, parents or caregivers should be told to inform the hospital if no adult care appointment invitation is received.
By Lynda Williams
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