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Table 1 Definitions of the nine proposed beneficial features

From: How well do services for young people with long term conditions deliver features proposed to improve transition?

Age-banded clinic. An intermediate clinic setting such as a young person’s clinic or a young adult team. In child health services, it would mean that children less than about 14 years would not be at the clinic. In adult services, it would mean adults over 24 years of age would not be at the clinic.
Meet adult team before transfer. This could be in a joint clinic where child health and adult healthcare professionals consult together; or an adult clinician might visit the child clinic to be introduced; or the young person might have been taken to the adult clinic by their key worker or child healthcare professional to meet the adult clinician(s).
Promotion of health self-efficacy. The young person is asked ‘Have you received enough help to increase your confidence in managing your condition?’ To fulfil this PBF, the clinic should have a written policy about how they provide information and encourage the young person to take responsibility for their health and give them information about their condition.
Written transition plan. This should be created some time before transfer. It should include plans for wider aspects of transition, not just the arrangements for transfer to adult health services. The young person should have a copy of it and it should be reviewed at each appointment and updated as necessary.
Appropriate parent involvement in their child’s care, but with changing responsibilities. Parent and young person are asked separately if they think the level of involvement is appropriate. Involvement concerns what happens in the clinic (parent being present or not and who does the talking).
Key worker. This is a single person known to the young person whom they can easily contact or go to if there were any problems of co-ordination or misunderstandings that needed to be sorted out. The role could cross into education and social services. Whilst a clinic may have a policy to ‘appoint’ a key worker, this needs to be negotiated with the young person who may report it to be someone else they feel most comfortable with.
Coordinated team. Some young people need to see a team of people; for example, those with diabetes may need to see doctor, nurse, dietician, and psychologist. Those with cerebral palsy may need to see doctor, physiotherapist, and orthopaedic surgeon. The members of these teams need to work and communicate well together, and demonstrate to the young person and family that this is happening. Coordination of appointments on the same day is one demonstration of such coordination.
Holistic life-skills training about education, gaining employment, finances, housing, social relationships, sexual health, substance misuse, mental health etc. as well as health maintenance. The young person is asked whether they have had any formal life-skill training offered relevant to their long term condition. The health service may not provide such training but during consultations staff should inquire about such matters and make referrals to other agencies as needed.
Transition manager for clinical team. This person may not be known to the young person, but should facilitate good working relationships between adult and child services; ensure appropriate materials are available (such as health education or the transition plan); and will monitor that the young person has a suitable appointment in adult services and whether the appointment is kept.