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Metrics and Guidelines

  • Alun WilliamsEmail author
  • Abigail Jenkins
Chapter

Abstract

The landscape of transition is complex and variable. There is variability at the level of individuals (whose transition needs may be quite different), at the level of service provision, and in the type of health and social care system. The ability to understand and measure these variables in the process of transition, and how that may relate to the outcome for individuals is important. Such metrics will begin to inform how best to tackle complexity and variation in all these areas. The direction of travel for many adults with long term childhood conditions is largely unknown.

The evidence base for current practice is weak but growing. Guidance needs to be widely applicable—to support a range of individual conditions and circumstances without being so vague as to be unhelpful. Key to informing guidance are outcomes reported by service users (whether patients, their families or others). We must remember that transition from paediatric to adult care needs to include health and social care, psychosocial development, and education. Trying to find a way of measuring process and outcomes will guide the further development of transition planning.

Keywords

Guidelines Outcome metrics Long-term outcomes Service planning Commissioning Transition Transfer 

Notes

Declaration

Both ARW and ARJ have had formal roles with NICE relating to transition. ARW is a current member of a NICE standing committee.

References

  1. 1.
    The Children and Families Act. http://www.legislation.gov.uk/ukpga/2014/6/contents/enacted. Accessed 31 Aug 2018.
  2. 2.
    Dodge JA, Lewis PA, Stanton M, Wilsher J. Cystic fibrosis mortality and survival in the UK: 1947–2003. Eur Respir J. 2007;29(3):522–6.CrossRefGoogle Scholar
  3. 3.
    MacKenzie T, Gifford AH, Sabadosa K. Longevity of patients with cystic fibrosis in 2000 to 2010 and beyond: survival analysis of the cystic fibrosis foundation patient registry. Ann Intern Med. 2014;161(4):233–41.CrossRefGoogle Scholar
  4. 4.
    Watson AR. Non-compliance and transfer from paediatric to adult transplant unit. Pediatr Nephrol. 2000;14:469–72.CrossRefGoogle Scholar
  5. 5.
    Harden PN, Walsh G, Bandler N, et al. Bridging the gap: an integrated paediatric to adult clinical service for young adults with kidney failure. BMJ. 2012;344:e3718.CrossRefGoogle Scholar
  6. 6.
    Oakeshott P, Hunt GM, Poulton A, Reid F. Open spina bifida: birth findings predict long-term outcome. Arch Dis Child. 2012;97(5):474–6.CrossRefGoogle Scholar
  7. 7.
    Oakeshott P, Reid F, Poulton A, et al. Neurological level at birth predicts survival to the mid-40s and urological deaths in open spina bifida: a complete prospective cohort study. Dev Med Child Neurol. 2015;57(7):634–8.CrossRefGoogle Scholar
  8. 8.
    Lorber J, Salfield SA. Results of selective treatment of spina bifida cystica. Arch Dis Child. 1981;56(11):822–30.CrossRefGoogle Scholar
  9. 9.
    McGuire EJ, Woodside JR, Borden TA, Weiss RM. Prognostic value of urodynamic testing in myelodysplastic patients. J Urol. 1981;126(2):205–9.CrossRefGoogle Scholar
  10. 10.
    Lapides J, Diokno AC, Silber SJ, Lowe BS. Clean, intermittent self-catheterization in the treatment of urinary tract disease. J Urol. 1972;107(3):458–61.CrossRefGoogle Scholar
  11. 11.
    Malakounides G, Lee F, Murphy F, Boddy SA. Single centre experience: long term outcomes in spina bifida patients. J Pediatr Urol. 2013;9(5):585–9.CrossRefGoogle Scholar
  12. 12.
    Stadler D. What has become of them? The careers of the physically handicapped—a model study (German). Rehabilitation (Stuttgart). 1984;23(3):120–3.Google Scholar
  13. 13.
    Court JM. Outpatient-based transition services for youth. Pediatrician. 1991;18(2):150–6.PubMedGoogle Scholar
  14. 14.
    American Academy of Pediatrics. Transition of care provided for adolescents with special health care needs. Pediatrics. 1996;98:1203.Google Scholar
  15. 15.
    Fiorentino L, Datta D, Gentle S, et al. Transition from school to adult life for physically disabled young people. Arch Dis Child. 1998;79:306–51.CrossRefGoogle Scholar
  16. 16.
    Transition from children’s to adults’ services for young people using health or social care services. https://www.nice.org.uk/guidance/ng43. Accessed 31 Aug 2018.
  17. 17.
    Developing and implementing the newcastle adolescent and young adult transitional care service. https://www.nice.org.uk/sharedlearning/developing-and-implementing-the-newcastle-adolescent-and-young-adult-transitional-care-service. Accessed 31 Aug 2018.
  18. 18.
    Transition from children’s to adults’ services. https://www.nice.org.uk/guidance/qs140. Accessed 31 Aug 2018.
  19. 19.
    Nagra A, McGinnity PM, Davis N, Salmon AP. Implementing transition: ready steady go. Arch Dis Child Educ Pract Ed. 2015;100:313–20.CrossRefGoogle Scholar
  20. 20.
    Implementing transition care locally and nationally using the ‘Ready Steady Go’ programme. https://www.nice.org.uk/sharedlearning/implementing-transition-care-locally-and-nationally-using-the-ready-steady-go-programme. Accessed 31 Aug 2018.
  21. 21.
    Brooks AJ, Smith PJ, Cohen R, et al. UK guideline on transition of adolescent and young persons with chronic digestive diseases from paediatric to adult care. Gut. 2017;66(6):988–1000.CrossRefGoogle Scholar
  22. 22.
    Jones AR, John M, Singh SJ, Williams AR. Transition from paediatric surgery: how many patients do we need to plan for? Ann R Coll Surg Engl. 2016;98(8):586–8.CrossRefGoogle Scholar
  23. 23.
    Jones AR, Williams AR, de Coppi P, Hannon E. Transition in oesophageal atresia. Presented at the annual congress of the British association of paediatric surgeons; 2017.Google Scholar
  24. 24.
    While A, Forbes A, Ullman R, et al. Good practices that address continuity during transition from child to adult care: synthesis of the evidence. Child Care Health Dev. 2004;30(5):439–52.CrossRefGoogle Scholar
  25. 25.
    Schrander-Stumpei C, Sinnema M, van den Hout L, et al. Healthcare transition in persons with intellectual disabilities: General issues, the Maastricht model, and Prader-Willi syndrome. Am J Med Genet C Semin Med Genet. 2007;145C(3):241–7.CrossRefGoogle Scholar
  26. 26.
    Kolhmainen N, McCafferty S, Maniatopoulous G, et al. What constitutes successful commissioning of transition from children’s to adults’ services for young people with long-term conditions and what are the challenges? An interview Study. BMJ Paediatr Open. 2017;1:e000085.CrossRefGoogle Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  1. 1.Department of Paediatric UrologyQueen’s Medical CentreNottinghamUK
  2. 2.School of MedicineUniversity of Leicester, George Davies CentreLeicesterUK

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