Table 2 Proposed beneficial features

C Age banded clinic(s)

[47]

[48, 49]

Yes/No

If yes

Adolescent clinic

Joint clinic (shared staff)

Young adult clinic

A Meeting the adult team before transfer of care

[47]

[36, 50–54]

Yes/No

If yes

Joint clinic (shared staff)

Meet for introduction

S Active promotion of health self-efficacy

[55–59]

[60–70]

Have you received enough help to increase your confidence in managing your condition?

Do you have a policy/protocol for promoting health self-efficacy?

Scale 1-3

Enough help

Not enough help

Did not need help

TP A written transition plan

[58, 59]

[23, 63, 71]

Do you have a written plan that includes the plan for health care?

Do you aim for there to be a written transfer plan for every young person? Yes/No

Yes/No

P Parental involvement.

[58, 59]

[50, 60, 72, 73]

P(a) Has your parent/carer been consulted about and involved in your care.

P(c) Have been consulted about and involved in your child’s care?

Do you have a parental engagement policy?

Keeping parents engaged in their child’s care but with different responsibilities. Whilst the young person must separate from parents, total independence is not the aim. All young people will seek advice from parents. Some with CHN remain more dependent on parents than others.

Yes/No

P(b) Is this the right amount, too much or too little?

Yes/No

P(d) Is this the right amount, too much or too little?

K Key worker.

[10, 55, 58, 59, 74–76]

[22, 37, 77–80]

Have you got or had a key worker who works with you?

Do you have a policy for ensuring every young person has a key worker?

A single person the young person can approach to sort out any problems around health care?

Yes/No

Who is it?

Does not have to be formally allocated.

Yes/No

Does not have to be a health provider but must be able to influence health services.

M Services co-ordinator working at managerial level

[55]

[34, 49]

Is there are co-ordinator of transition and transition clinics? Yes/No

T Convenient coordinated care

[59]

[48]

In the clinics you attend, can you see a variety of professionals such as doctor, psychologist, therapist on the same day or place?

Do your follow up clinics offer a variety of professionals such as doctor, psychologist, therapist, dietician?

Yes/No/Not applicable

Yes/No

H Formal training, relevant to health condition, in wider life skills - education, relationships, health maintenance etc. Holistic approach with contacting of other agencies and if appropriate sign posting young person to other agencies as appropriate

[58]

[38, 81]

Yes/No

Do you provide life skills modules or ensure they are available from other providers?

Yes/No