RIESGOS DE LA NAVEGACIÓN Capítulo I

facilitating factors

Research question two: What do ATN health care team members perceive as facilitators to a successful transition to adult care?

Intrinsic characteristics included emotional maturity and the ability and motivation to function independently. External factors included a strong social support system, uninterrupted health insurance benefits, available transportation system and stable housing. Characteristics of adult clinics associated with successful transition are:

 A single contact person assists the adolescent in transition

 The new provider is introduced to the adolescent at the start of the transition process

 Comprehensive services are provided including primary care, pharmacy and dental services

 Psychosocial services such as case management, mental health and support groups are provided

 Flexibility is provided as the adolescent adjusts to the adult clinic environment

 The staff are culturally competent and LGBT friendly

 Follow-up is facilitated by the case manager from the pediatric clinic

 Adult providers deliver age and developmentally appropriate care for the adolescent

 Communication between providers from the adolescent and adult sites is shared and timely

Key issues for young people Not reported. Recommendations for

successful transition

Not reported Any negative impacts

reported?

Yes/ No

Individual/ organisational etc.

no

Limitations/weaknesses of study

As reported by authors

Potential limitations included researcher bias, a social desirability bias in the key informants and a lack of generalizability.

Any other comments

Irvine T, Srinivasan R, Casson DH et al. Assessing the value of a pre-transfer meeting in IBD transition services. Gastrointestinal Nursing 2010; 8 (7): 19-25

Country: UK

Relevant to review questions: 1, 3 Study design: cross-sectional survey Method of data collection

e.g. 15 Semi structured interviews & 2 focus groups

Semi-structured postal questionnaire given to 66 families (35 responded).

INTERVENTION Description of model/ intervention

Structured approach:

 To introduce the concept of transition by age 13-14 years

 To time transition as per individual patient needs

 A ‘pre-handover’ meeting at the paediatric hospital for the families to meet the new adult team with the paediatric team present. This meeting is an open forum and an opportunity for individual case discussion, queries and

128

support before transfer.

 A comprehensive clinical summary from the paediatric hospital to the adult hospital before transfer

 First hospital appointment at the adult centre with the paediatric team in the clinic room providing an interactive handover

 Handover to adult services at the end of the clinic appointment

 Continued support as desired in individual instances. General approach: transfer young people after their GCSE exams, once they are 16 years and older. Transition arrangements have been established with the adult hospital. Topics discussed at a pre- handover meeting held with all families include: young people being in the driving seat concerning all decision making; similarity of therapeutic approach between adult and paediatric practices; the fact that parents will not be able to stay overnight during inpatient admissions; appointments and clinic systems; telephone access to nurse specialists; differences in treatment practices; less choice with blood sampling; enteral feed regimen differences for Crohn’s disease; research and experimental treatment differences.

The pre-transfer meeting is held one month before the handover clinic and lasts one hour. It is a group discussion led by an adult gastroenterologist, nurse specialist and dietician. At the end of the session there is an opportunity to talk informally with members of the team.

Theoretical model (if given) None given. Condition

e.g. diabetes

Inflammatory bowel disease (IBD)

Comparator? None

Setting Transition between paediatric services at Alder Hey Children’s NHS Foundation Trust, Liverpool and the Royal Liverpool University Hospital (adult centre).

Who delivered it? Introduction by paediatric gastroenterologist, the led by adult gastroenterologist, nurse specialist and dietician.

POPULATION

Target recipients (who it was

aimed at) e.g. age, sex, health condition

Young people (adolescents) who had been through the transition process between Alder Hey and RLUH from 2003 – 2008. 66 families were contacted, 35 returned the questionnaire (53% response rate). Outcomes for individuals:

List outcomes, how each was measured (e.g. scale), who measured it and when it was measured.

Patient information:

 Did you attend the pre-transfer meeting? (Yes/ No)

 Did you have enough information regarding the move to the adult hospital? (4 point ordinal scale)

 Do you think you had the opportunity to discuss any changes as a result of transition to adult services at the pre- transfer meeting? (Yes/ No/ Don’t know)

 Do you feel the pre-transfer meeting increased or reduced your anxieties about your transfer? (3 point ordinal scale/ do not recall)

Patient satisfaction:

 How satisfied were you about meeting the adult team prior to seeing them at the handover clinic? (4 point ordinal scale)

129

appointment at the adult hospital? (Yes/ No)

 How helpful was it to you that members of the paediatric team were at your first clinic appointment? (3 point ordinal scale)

Suggestions:

 Do you feel there should have been others involved in your care present? (Yes/ No/ Don’t know)

 Subjective comments.

Clinical/ health outcomes 33/ 35 were satisfied or very satisfied with meeting the adult team prior to seeing them at the handover clinic (p<0.0001)

31/ 35 felt they were given enough information about the move (p<0.0001)

30/ 35 felt they had opportunity to discuss change (p<0.0001) 22/ 35 felt the pre-transfer meeting reduced their anxiety about transfer (p<0.0877)

31/35 felt the right people were present at the first adult appointment (p<0.0001)

32/ 35 found it fairly or very helpful to have members of the paediatric team at the first adult appointment (p<0.0001)

Suggestions for future transition:

GPs and dietitians should form a part of the transition process. Creation of an email forum for young people to make contact and share information and experiences.

Service delivery,

organisational outcomes.

List outcomes

None reported.

Whose perspective? List whose views, if any, are reported (e.g. patients, parents, caregivers)

Patients and carers.

Costs/economic matters

State whether paper contains any economic info.

No.

Key process issues - Barriers None reported. Key process issues –

facilitating factors

None reported.

Key issues for young people Provision of adequate information Opportunity to discuss change

Reduction in perceived anxiety about the transfer Recommendations for

successful transition

Pre-transfer meeting, facilitating an opportunity to meet the adult team before the first clinic visit, and offering families the opportunity to meet other families with the same condition.

Any negative impacts reported?

Yes/ No

Individual/ organisational etc.

No – although it increased anxiety for a few.

Limitations/weaknesses of study

As reported by authors

Questionnaire not validated.

Response rate of 53%; no drop out analysis was undertaken.

Potential ‘Hawthorne effect’: patients and carers may have been pleased to receive attention from researchers.

130