How Do We Organize Smooth, Effective Transfer from Paediatric to Adult Diabetes Care?

Abstract

Transition from paediatric to adult care is a major milestone in the life of a young person with diabetes, yet it is commonly poorly done. This finding is supported by the dearth of publications in the literature that particularly relate to transition in diabetes care. Other transitions occur at this time of life, for example: from parental supervision to growing independence and from secondary school to post-school options. Health professionals know, from anecdotal evidence, that this is the period when young people with diabetes ‘drop out’ of the system. They often have no specialist follow-up and attend only the primary care physician for insulin prescriptions. Then, inevitably, a problem occurs that cannot be managed by the family doctor, such as diabetic ketoacidosis or pregnancy, and the patient is finally referred to an adult unit. There are many contributing factors to poor transition but two major reasons are that members of this age group are classic non-attenders and, importantly, they have not been well prepared for the transition. Preparation is the key to success and this must include parents as well as the young person. Components of transition preparation include: self-advocacy, independent health care behaviours, sexual health, psychosocial support, education and vocational planning, and health and lifestyle (drugs, alcohol, etc.). Considerable differences exist between many of the paediatric and adult services, and this cultural shift has significant impact on the success or otherwise of transition. Paediatric care is often multidisciplinary, family focused, prescriptive and requires parental direction and consent. Adult care is often provided by a single doctor, is patient focused, more investigational and requires autonomous, independent skills on the part of the user. Young people and their families, unless well prepared, become confused and disillusioned with the adult system. To avoid this situation, there is a variety of solutions, including adolescent transition clinics attended by both paediatric and adult teams, a transition coordinator who is responsible for making the transfer as smooth as possible, etc. Unfortunately, the very nature of the group in question means that none of these solutions is perfect. In reality, transition is a process that takes place over a number of years and should not be considered an event. The transition process needs to begin in early adolescence, to foster independence and communication skills, and to incorporate health education.

Transition of Care and Health‐Related Outcomes in Pediatric‐Onset Systemic Lupus Erythematosus

“…Patients who required medical attention following discharge from pediatric care could not access it even when they experienced flares or ran out of medication. This replicates findings in transition cohorts of patients with sickle cell anemia (17) and diabetes mellitus (44), in which issues surrounding health insurance featured prominently. Maximizing accessibility to health care may diminish the financial difficulties surrounding transition and impact medical outcomes.…”

Evaluation of Patients’ Opinion and Metabolic Control after Transfer of Young Adults with Type 1 Diabetes from a Pediatric Diabetes Clinic to Adult Care

“…The HbA1c of the ‘drop-outs’ was higher than the average HbA1c prior to the transfer. Health professionals know, from anecdotal evidence, that this is the period when young people ‘drop out’ of the system or rarely visit a specialist [7,8,9,10,11, 23]. Bartsch et al[ 22] reported that 10% (n = 96, 18.9 years old) of the patients interviewed after transfer didn’t see a doctor and 24% never or less than once a year saw a physician.…”

“…The individual rather than the family approach or busy clinics full of elderly sick patients are often alienating for the young adult [7, 8]. Previous studies have shown that some patients drop out of the medical care system or their attendance rate decreases with consequent deterioration of metabolic control [9,10,11]. Therefore, effective care needs to encompass the various psychological, social and educational factors.…”

Transition of young adults with phenylketonuria from pediatric to adult care

“…Occurring often at the same time as other important steps of life (i.e. leaving the family to live independently, leaving or changing school, and starting work), transition may cause problems for young adults and their families (Schidlow and Fiel 1990;Callahan et al 2001;McGill 2002;Feillet et al 2010). The young adults have to deal with their own responsibilities in the adult outpatient clinic and they are forced to show personal initiative and independence in handling their disease.…”