Process and systems: identified professional lead to ‘champion’ transition issues is needed.

Effective transition is dependent on inter-agency coordination. Professionals felt it was very important to involve general practice, community paediatricians and community therapists in transition care planning. Role of PHC in monitoring transition for YP warrants further examination and modelling. Adult services need to incorporate family dynamics and educational issues in the care of YP during and after transition.

Challenges and barriers:

1. Poor inter- and intra- agency coordination from perspective of professionals

2. The model least likely to meet YPs needs sees transition as a single transfer event to an unfamiliar clinic with completely new professionals whose views on condition management are different from the YPs previous practitioners.

3. Lack of adequate resources in relation to transition planning 4. Organisations failing to prioritise the process

5. Gaps in levels of integration between sectors in the health care system also created barriers to transition process

6. Rigid policies and protocols create inconsistencies in transition planning

In summary, transition should be participative, supportive and flexible process. Should respond to individual needs of YP. Professionals should develop a renewed focus on relationships and communication with YP. Needs to be appropriate balance between risk and autonomy in planning transition. Transition programme should have individualised preparation period that includes age- appropriate information and visits to adult services.

Limitations/weaknesses of review

As reported by authors

Paucity of primary good quality research.

Absence of good quality studies exploring adolescent experience of transition.

Any other comments Linked to Wilson et al, 2009. Detailed methods of the review found here.

Insufficient evidence from SR’s. Review was broadened re. transition and papers used from range of sources, e.g. descriptive reports, qualitative papers, case studies, policy docs and practice guides. This paper is the final in a series of 3 to review the evidence relating to the management of LTCs.

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Coyne IT, Breen M, Dempsey O, While A. 2012. A systematic review of the transition process for young people with cystic fibrosis. Journal of Cystic Fibrosis, 11, S139

Relevant to review questions: 2, 3 STUDY DESIGN:

Databases searched: CINAHL, EMBASE, PsychINFO, Pubmed Years searched: 2001 - 2011

Languages included: Not stated

REVIEW QUESTIONS: How is the (transition) process experienced by young people with chronic illness?

How does the transition process impact on young people’s health and wellbeing?

How is the transition process by all stakeholders? INCLUSION CRITERIA

POPULATION

e.g. age, sex, health condition, country

No inclusion criteria stated

-probably young people with chronic illness, especially but not exclusively cystic fibrosis

INTERVENTION/ COMPARATORS

No inclusion criteria stated - Transition process OUTCOMES No inclusion criteria stated.

- Probably experiences of young people, impacts on health and wellbeing, and process issues

STUDY DESIGNS No inclusion criteria stated.

7 qualitative and 10 quantitative studies on transition and cystic fibrosis were included.

FINDINGS Despite transition, young adults continue to be dependent on their parents for support and assistance. Some parents resist the more marginal role they are expected to play in clinical consultations which can lead to tensions in the young person/ clinician/ parent triad. Key facilitating factors: relationship with clinician, clinician’s attitude to transition, delivery of age appropriate care.

Barriers: treatment burden, forgetting of treatments, lack of perceived benefit of treatments.

Successful transition programs included orientation tours, information provision and familiar face in adult clinics.

Limitations/weaknesses of review

As reported by authors

None reported.

Any other comments Abstract only – need to contact authors for full report (authors contacted, full report not yet available).

Crowley, R., Wolfe, I., Lock, K., McKee, M. (2011) Improving the transition between paediatric and adult healthcare: a systematic review

Relevant to review questions: 1 STUDY DESIGN:

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Databases searched: MEDLINE, HMIC, PsychINFO and EMBASE

Years searched: Does not state (looks like between 1992 and 2010 from refs)

Languages included: Papers with an English title and abstract published in any language were considered

REVIEW QUESTIONS: Not specified clearly

Paper systematically reviews the evidence of the effectiveness of transitional care interventions in improving health outcomes in a broad range of conditions (any chronic, physical or mental illness or disability), in order to identify key features on which clinicians can base future services and research.

INCLUSION CRITERIA POPULATION

e.g. age, sex, health condition, country

A wide age range was included (11-25 years)

Children have chronic disease, mental illness or disability Countries not specified

8 studies examined services for patients with diabetes mellitus, one for cystic fibrosis and one for organ transplant recipients

INTERVENTION/ COMPARATORS

Studies were included if

 They involved a health service intervention during the period of transition from paediatric to adult care

 They evaluated changes in health outcomes following this transfer

 Outcomes were compared either between an intervention and control group or pre-intervention and post-intervention in a single group

OUTCOMES Health outcomes:

 Disease specific biochemical indicators, such as HbA1c or creatinine, and/or health service use, such as percentage of missed follow-up appointments

 More robust outcome measures included hospital admissions for diabetic ketoacidosis or prevalence of diabetic complications (nephropathy, retinopathy, hypoglycaemia)

 None involved long-term follow up of morbidity of mortality STUDY DESIGNS

 The studies varied in terms of overall study design, in the number and age range of participants, and the durations of intervention and follow-up.

 Eight studies attempted comparison between an intervention group and controls

 2 studies did not use any comparison group, but measured outcomes of a single group of patients pre-transfer and post transfer

FINDINGS  10 studies met the inclusion criteria, 6 of which showed statistically significant improvements in outcomes.

 All 6 interventions that resulted in significant improvements were in studies of patients with diabetes mellitus, with glycosylated haemoglobin level, acute and chronic complications, and rates of follow-up and screening used as outcome measures.

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intervention, directed at: the patient (educational programmes, skills training); staffing (named transition coordinators, joint clinics run by paediatric and adult physicians); and service delivery (separate young adult clinics, out of hours phone support, enhanced follow-up). Limitations/weaknesses of

review

As reported by authors

The review is limited by the poor methodological quality of the studies.

Analysis of the included studies was complicated by the multiple interventions delivered together without separate evaluation of different components and widely differing definitions and duration of interventions.

The heterogeneity of interventions, conditions and outcomes makes it very difficult to directly compare studies.

Any other comments

Dilek Y, Berna FE, Dilek K. 2011. Transition to adult for adolescent with chronic condition and strategies of nursing. Acta Paediatrica, International Journal of Paediatrics, 100, 131-132. Relevant to review questions: 1? & 3