Written healthcare transition plan|
Patients and families need an individualized care plan and timetable for transition. This plan should include treatment goals, a timetable for transfer, and ensure there is a consistency of approach between all health professionals.
The care plan should include information about target blood phenylalanine levels, expected frequency of home blood spot taking, educational needs and the training skills required by the patient.
Necessary knowledge and skills required for independent living|
This should include information about the low phenylalanine diet e.g. natural protein/phenylalanine allowance, dose of protein substitute, suitable low protein foods, meal planning and food preparation, ordering of dietary products on prescription, travel/holidays and eating away from home.
Patients should be encouraged to use apps to record blood phenylalanine levels, reminders for protein substitute intake and calculate their daily protein/phenylalanine intake.
They also need a good understanding of the possible effects of high blood phenylalanine levels on mood, cognitive and executive function.
Home blood taking/blood results|
Patients should learn to take home blood samples competently, order blood equipment and return samples according to agreed schedules.
Teenagers should discuss their own blood results directly with health professionals. Blood results could be sent by text, telephone, or by computer web sites (providing this is permitted by hospital IT privacy policies) to teenagers.
Consider overweight, body image, healthy lifestyle, exercise, extreme sports, smoking and its cessation, alcohol, recreational drugs, pregnancy, contraception, and genetics.
Psychological and social support|
Peer support, effective strategies to cope with bullying and feelings of social isolation should be explored.
Consider provision of ‘role model’ peer support, peer support groups, suitable and ‘monitored’ ‘facebook’ or internet chat sites.
Information and support are required regarding changes in financial allowances, grants, insurance or prescription charges.
Consider ‘supported’ summer camps for adolescents and adults to share and discuss issues that concern them.
Supporting the caregivers|
Involve parents/caregivers at all stages.
Give parents/caregivers information and listen to their concerns. They will need time to develop trust in the adult IMD team.
At the start of the transition process, information should be given to parents about the philosophy of transition, so they can prepare for the change from the paediatric to the adult team.
Consider other changes and events in a patient’s life: exams, school leaving, university commencement, and relationships. Consider developmental readiness.
Preparing for adult service|
Teenagers should be seen in clinic without parents/caregivers but still give parents the opportunity to discuss any concerns they may have.
The adult team should attend transition clinics and be introduced to the family and young adult from the age of 14 years.
A pre-transfer visit to the adult clinic may be helpful with at least one return visit made to the paediatric clinic to discuss concerns.
Ensure a member of the paediatric team attends the first few adult clinic visits to ensure continuity of care and a familiar face.