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The evidence base for transition is bigger than you might think
  1. Janet E McDonagh1,
  2. Janine Hackett2,
  3. Marie McGee3,
  4. Tauny Southwood3,4,
  5. Karen L Shaw4
  1. 1Centre for Musculoskeletal Research, University of Manchester, Manchester, UK
  2. 2Department of Occupational Therapy, University of Derby, Derby, UK
  3. 3Department of Rheumatology, Birmingham Children's Hospital NHS Foundation Trust, Birmingham, UK
  4. 4Department of Health and Population Sciences, University of Birmingham, Birmingham, UK
  1. Correspondence to Dr Janet E McDonagh, Centre for Musculoskeletal Research, University of Manchester, Stopford Building 2nd Floor, Oxford Rd, Manchester M13 9PT, UK; janet.mcdonagh{at}manchester.ac.uk

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We would like to congratulate Nagra et al1 on their impressive work and the impact of Ready Steady Go programme on raising the profile of transitional care in the NHS.

The checklists that provide the foundation for the Ready Steady Go programme were originally developed in 2002–2003, following an extensive national needs assessment, funded by Arthritis Research UK and involving young people across the UK and all major stakeholders.2–4 These checklists (originally called individual transition plans) were based on the needs identified, the core principles of early, mid and late adolescent development, the national school curriculum and the Ontrac programme in Canada.5 The checklists formed an integral component of one of the first evidence-based programme of transitional care in any chronic illness, and involved 10 UK rheumatology centres and 308 young people and their parents,6 which included an objective evaluation of the programme and reported positive benefits.7

Since this time, the checklists have been used in the rheumatology service at Birmingham Children's Hospital8 irrespective of condition and in various other specialties both nationally and internationally. The adolescent rheumatology team received a BUPA clinical excellence award in 2005 in recognition of this work, with specific focus on translating research into practice. The checklists are reviewed regularly and updated to address new or emergent aspects of adolescent life (eg, cybersafety).

We wholeheartedly agree with Nagra and other researchers in this area9–11 that young people with long-term conditions are first and foremost young people. As such, our checklists have provided a core set of generic items to which specialties can also add condition specific issues. However, unlike the Southampton experience, we have not found the checklists fit for purpose for young people with learning disability and/or significant cognitive impairment. As such, we have adopted the ‘My Life My Health’ plan, originally developed by The Transition Pathway Partnership in 2008 for use with such young people and their families.12

As described by Nagra et al,1 it must be stressed that the plans are but one component of the transitional care programme which in Birmingham includes a weekly adolescent clinic and various therapy-led initiatives including peer support and self-management residential trips,13 mentoring, a suite of developmentally appropriate leaflets (eg, disclosure, pain, pacing, sleep hygiene), group activities to address self-esteem, body image, vocational planning and leisure and so forth.

It is important to acknowledge that successful implementation of any transitional programme requires effective communication within and between multidisciplinary teams. Indeed, team climate has been reported to be an important determinant of transitional care quality.14 In Birmingham, a multidisciplinary team communication template (referred to as ‘The Transition Plan’ on the Southampton website but not mentioned in the paper) was developed by JH (occupational therapist) in response to the challenges of communicating progress of individual young people across a large multidisciplinary team as well as between teams. This document was the basis of preclinical and postclinical team meeting consultations to ensure that skills are built on at consecutive hospital visits and these sessions are tailored to meet the young person's needs and inform future interventions.

An omission in the current report is reference to the training needs of staff charged with implementing the Ready Steady Go programme. Unmet training needs in adolescent health have been identified across disciplines in both paediatric and adult care.15–17 Undertaking a training needs assessment is therefore an important prerequisite before implementing any programme like Ready Steady Go, to ensure that staff are appropriately supported with adequate signposting and knowledge of referral pathways in order to address any issue which the young people raise. This is particularly relevant to the more generic adolescent health aspects such as sexual health, mental health and substance use. Such practices are core to any adolescent service and embedding screening tools such as HEADSSS into transitional care services.18

Checklists serve as a useful trigger for engaging young people in conversation, for identifying young people at risk, for promoting opportunities for increasing self-management and facilitating continuity and tracking of young people through the transition process. There are increasing numbers being reported in the literature,19 ,20 but again, this evolving research is not referenced in the current report. Regardless of the tools being used, it is important to note that they rarely assess mastery of knowledge and skills, and thus it is important to check a young person's actual competency (which may be different to their perceived competency). Indeed, Fredericks et al21 reported that young people had poor adherence despite high self-perceived competency in self-management. Likewise, autonomy in one area does not necessarily correlate with autonomy in another.9

There is unlikely to be a one-size-fits-all model for transitional care, but implementation of programmes like Ready Steady Go programme will certainly support better quality of care and increase awareness that developmentally appropriate healthcare for young people extends beyond physical health. The plea from Allen and Gregory in 2009 is worth restating—‘Rather than asking how best to manage transition, we might ask how best to meet the needs of young people with diabetes [or any other long term condition] at this stage of the life course’.22

References

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Footnotes

  • Contributors All authors were involved in preparing this paper and approved the final draft prior to publication.

  • Funding The original research of the authors to which this letter primarily refers to refs. 2–4, 6, 7 was funded by the Arthritis Research UK.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; internally peer reviewed.

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