Citation
J Haem Pract 2016; 3(1):71-93. doi: doi:10.17225/jhp00059

Authors: Steve Chaplin

Steve Chaplin
Freelance medical writer

Abstract

The need to prepare children and young people with haemophilia for long-term care in the adult sector has long been accepted and is reflected in many national health care policies. Ideally, transition should be an individualised age- and development-appropriate process, through which each young person is empowered to self-manage, with support from their families and multidisciplinary team (MDT). It is widely recognised that young people who are not engaged in self-management frequently become nonadherent to therapy. For those with haemophilia, this can have a life-long impact on joint health and quality of life. In practice, anecdotal reports from individuals suggest that the transition process is often poorly planned, leaving them feeling lost and unsupported by the healthcare professionals who, until this point, have been core members of their support network. Rarely are the views of young people or their families sought regarding the outcome of their transition process. For those with less severe disease or rarer bleeding disorders, and for girls at the menarche, transition is often not addressed at all. This literature review forms the first part of a project that seeks to identify the outcome measures that can be used to drive a nurse-led initiative improvement in transition for young people with bleeding disorders, through changes in both working practices among health professionals and in the underpinning system, which enables them to put such changes into practice.

Acknowledgements

This article was commissioned as part of the Haemnet Transforming Transition programme, which is funded by a grant from the Burdett Trust for Nursing.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited

Sample

Transition

References

  1. Srivastava A, Brewer AK, Mauser-Bunschoten EP, et al; Treatment Guidelines Working Group on Behalf of The World Federation Of Hemophilia. Guidelines for the management of hemophilia. Haemophilia 2013 Jan;19(1):e1-47. doi: 10.1111/j.1365-2516.2012.02909.x.
  2. Department for Education and Skills, Department of Health. Transition. Getting it right for young people. March 2006. (http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4132149.pdf; accessed 15 September 2015).
  3. Department of Health. Core document, National Service Framework for Children, Young People and Maternity Services. October 2004. (https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/199952/National_Service_Framework_for_Children_Young_People_and_Maternity_Services_-_Core_Standards.pdf; accessed 15 September 2015).
  4. Care Quality Commission. From the pond into the sea. Children’s transition to adult health services. June 2014. (https://www.cqc.org.uk/sites/default/files/CQC_Transition%20Report.pdf; accessed 15 September 2015).
  5. Beresford B, Cavet J. Transitions to adult services by disabled young people leaving out of authority residential schools. York: Social Policy Research Unit, University of York, 2009. (http://www.york.ac.uk/inst/spru/pubs/pdf/resident.pdf; accessed 15 September 2015).
  6. Clarke S, Sloper P, Moran N et al. Multi-agency transition services: greater collaboration needed to meet the priorities of young disabled people with complex needs as they move into adulthood. J Integrated Care 2011;19:30-40.
  7. Singh SP, Paul M, Ford T et al. Process, outcome and experience of transition from child to adult mental healthcare: multiperspective study. Br J Psychiatry 2010;197:305-12.
  8. Hovish K, Weaver T, Islam Z et al. Transition experiences of mental health service users, parents, and professionals in the United Kingdom: a qualitative study. Psychiatric Rehab J 2012;35:251-7.
  9. Gordon R. Diabetes transition: Assessment of current best practice and development of a future work programme to improve transition processes for young people. NHS Diabetes, August 2012. (https://www.diabetes.org.uk/Documents/nhs-diabetes/paediatrics/diabetes-transition-report.pdf; accessed 15 September 2015).
  10. National Institute for Health and Care Excellence. Transition from children’s to adult services for young people using health or social care services. Guideline scope. August 2014. (www.nice.org.uk/guidance/gid-scwave0714/resources/transition-from-childrens-to-adult-services-final-scope3; accessed 15 September 2015).
  11. Department for Children, Schools and Families, Department of Health. Transition: moving on well. A good practice guide for health professionals and their partners on transition planning for young people with complex health needs or a disability. February 2008. (http://www.bacdis.org.uk/policy/documents/transition_moving-on-well.pdf; accessed 15 September 2015).
  12. Royal College of Nursing. Lost in transition. Moving young people between child and adult health services. 2013. (https://www.rcn.org.uk/__data/assets/pdf_file/0010/157879/003227_WEB.pdf; accessed 15 September 2015).
  13. National Institute for Health and Care Excellence. The epilepsies in children and young people. NICE quality standard QS27. February 2013. (https://www.nice.org.uk/guidance/qs27; accessed 15 September 2015).
  14. National Institute for Health and Care Excellence. Attention deficit hyperactivity disorder. NICE quality standard QS39. July 2013. (https://www.nice.org.uk/guidance/qs39; accessed 15 September 2015).
  15. NHS England. Proposed congenital heart disease standards and service specifications: a consultation. 15 September 2014 to 8 December 2014. Reference Pack. September 2014. (https://www.engage.england.nhs.uk/consultation/congenital-heart-disease-standards/user_uploads/reference-pack.pdf; accessed 15 September 2015).
  16. NHS Improving Quality. Parents’ round table discussion. What will the parents say? February 2014. (www.nhsiq.nhs.uk/download.ashx-?mid=9190&nid=9192; accessed 15 September 2015).
  17. Beresford B. Making a difference for young adult patients. Practice prompts: key messages from research. Together for Short Lives, August 2013. (http://www.togetherforshortlives.org.uk/assets/0000/4954/TfSL_Making_a_difference_for_young_adult_patients_A5_Cards_x_12__FINAL_.pdf; accessed 15 September 2015).
  18. Department for Education, Department of Health. 0 to 25 SEND code of practice: a guide for health professionals. September 2014
  19. National Network of Parent Carer Forums. What good integrated care looks like in transition. NNPCF Steering Group, August 2013. (https://docs.google.com/viewer?a=v&pid=sites&srcid=ZGVmYXVsdGRvbWFpbnxubnBjZnRlbXB8Z3g6MzZiMTM4MzFkZGExZmRhMw; accessed 15 September 2015).
  20. American Heart Association Congenital Heart Defects Committee of the Council on Cardiovascular Disease in the Young, Council on Cardiovascular Nursing, Council on Clinical Cardiology, and Council on Peripheral Vascular Disease. Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and medical and psychosocial issues: a scientific statement from the American Heart Association. Circulation 2011;123:1454-85.
  21. McLaughlin SE, Diener-West M, Indurkhya A et al. Improving transition from pediatric to adult cystic fibrosis care: lessons from a national survey of current practices. Pediatrics 2008;121:e1160-6.
  22. Begley T. Transition to adult care for young people with long-term conditions. Br J Nurs 2013;22:506, 508-11.
  23. Gravelle A, Davidson G, Chilvers M. Cystic fibrosis adolescent transition care in Canada: a snapshot of current practice. Paediatr Child Health 2012;17:553-6.
  24. Tuchman L, Schwartz M. Health outcomes associated with transition from pediatric to adult cystic fibrosis care. Pediatrics 2013;132:847-53.
  25. Raymond JK, Duke DC, Shimomaeda L, on behalf of the Harold Schnitzer Diabetes Health Center Transition Committee MA. Looking forward to transition: perspectives on transition from pediatric to adult diabetes care. Diabetes Manag (Lond) 2013;3(4):10.2217/dmt.13.27. doi:10.2217/dmt.13.27.
  26. Hilliard ME, Perlus JG, Clark LM et al. Perspectives from before and after the pediatric to adult care transition: a mixed-methods study in type 1 diabetes. Diabetes Care 2014;37:346-54.
  27. Garvey KC, Beste MG, Luff D et al. Experiences of health care transition voiced by young adults with type 1 diabetes: a qualitative study. Adolesc Health Med Ther 2014;5:191-8.
  28. Garvey KC, Wolpert HA, Laffel LM et al. Health care transition in young adults with type 1 diabetes: barriers to timely establishment of adult diabetes care. Endocr Pract 2013;19:946-52.
  29. Lotstein DS, Seid M, Klingensmith G et al. Transition from pediatric to adult care for youth diagnosed with type 1 diabetes in adolescence. Pediatrics 2013;131:e1062-70.
  30. de Beaufort C, Jarosz-Chobot P, Frank M, de Bart J, Deja G. Transition from pediatric to adult diabetes care: smooth or slippery? Pediatr Diabetes 2010;11:24-7.
  31. Singh SP, Paul M, Ford T et al. Transitions of care from Child and Adolescent Mental Health Services to Adult Mental Health Services (TRACK Study): a study of protocols in Greater London. BMC Health Serv Res 2008;8:135. doi: 10.1186/1472-6963-8-135.
  32. Iyer A, Appleton R. Transitional services for adolescents with epilepsy in the UK: a survey. Seizure 2013;22:433-7.
  33. Singh SP, Paul M, Ford T et al. Process, outcome and experience of transition from child to adult mental healthcare: multiperspective study. Br J Psychiatry 2010;197:305-12.
  34. Gibson F, Aldiss S, Cass H et al. Benchmarks for transition from child to adult health services. London South Bank University, Orchid and Great Ormond Street Children’s Hospital, 2014 (http://www.transitionstudy.co.uk/assets/benchmarksfortransitionfromchildtoadulthealthservicesfinal.pdf; accessed 15 September 2015).
  35. Together For Short Lives. Transition – A guide for clinical commissioning groups. April 2015. (http://www.togetherforshortlives.org.uk/professionals/resources/7959_transition_-_a_guide_for_clinical_commissioning_groups; accessed 15 September 2015).
  36. NHS England. CCG Outcomes Indicator Set 2014/15 - at a glance. December 2013 (www.england.nhs.uk/wp-content/uploads/2013/12/ccgois-1415-at-a-glance.pdf; accessed 15 September 2015).
  37. Department of Health. You’re welcome. Quality criteria for young people friendly health services. London. April 2011. (https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/216350/dh_127632.pdf; accessed 15 September 2015).
  38. Paul M, Street C, Wheeler N et al. Transition to adult services for young people with mental health needs: a systematic review. Clin Child Psychol Psychiatry 2015;20:436–57.
  39. Geerts E, van de Wiel H, Tamminga R. A pilot study on the effects of the transition of paediatric to adult health care in patients with haemophilia and in their parents: patient and parent worries, parental illness-related distress and health-related quality of life. Haemophilia 2008;14:1007-13.
  40. Steinkamp G, Ullrich G, Müller C et al. Transition of adult patients with cystic fibrosis from paediatric to adult care - the patients’ perspective before and after start-up of an adult clinic. Eur J Med Res 2001;6:85-92.
  41. Craig SL, Towns S, Bibby H. Moving on from paediatric to adult health care: an initial evaluation of a transition program for young people with cystic fibrosis. Int J Adolesc Med Health 2007;19:333-43.
  42. Rollo A, Salardi S, Ciavarella A et al. Transition from pediatric to adult care. Eight years after the transition from pediatric to adult diabetes care: metabolic control, complications and associated diseases. J Endocrinol Invest 2014;37:653-9.
  43. Markowitz JT, Laffel LM. Transitions in care: support group for young adults with type 1 diabetes. Diabet Med 2012 Apr;29(4):522-5.
  44. Holmes-Walker DJ, Llewellyn AC, Farrell K. A transition care programme which improves diabetes control and reduces hospital admission rates in young adults with type 1 diabetes aged 15-25 years. Diabet Med 2007;24:764-9.
  45. Cadario F, Prodam F, Bellone S et al. Transition process of patients with type 1 diabetes (T1DM) from paediatric to the adult health care service: a hospital-based approach. Clin Endocrinol (Oxf) 2009;71:346-50.
  46. Dolan L, Anderson A, Bell RA et al. Transition from pediatric to adult care for youth diagnosed with type 1 diabetes in adolescence. Pediatrics 2013;131:e1062-70.
  47. Sheehan AM, While AE, Coyne I. The experiences and impact of transition from child to adult healthcare services for young people with type 1 diabetes: a systematic review. Diabet Med 2014 Nov 18. doi: 10.1111/dme.12639.
  48. Mackie AS, Islam S, Magill-Evans J et al. Healthcare transition for youth with heart disease: a clinical trial. Heart 2014;100:1113-8.
  49. Huang JS, Terrones L, Tompane T et al. Preparing adolescents with chronic disease for transition to adult care: a technology program. Pediatrics 2014;133:e1639-46.
  50. Steinbeck KS, Shrewsbury VA, Harvey V et al. A pilot randomized controlled trial of a post-discharge program to support emerging adults with type 1 diabetes mellitus transition from pediatric to adult care. Pediatr Diabetes 2014 Nov 11. doi: 10.1111/pedi.12229.
  51. Haber MG, Karpur A, Deschenes N et al. Predicting improvement of transitioning young people in the partnerships for youth transition initiative: findings from a multisite demonstration. J Behav Health Serv Res 2008;35:488-513.
  52. Gravelle AM, Paone M, Davidson AG et al. Evaluation of a multidimensional cystic fibrosis transition program: a quality improvement initiative. J Pediatr Nurs 2015;30:236-43.
  53. Chaudhry SR, Keaton M, Nasr SZ. Evaluation of a cystic fibrosis transition program from pediatric to adult care. Pediatr Pulmonol 2013;48:658-65.
  54. Gilmer TP, Ojeda VD, Fawley-King K, Larson B, Garcia P. Change in mental health service use after offering youth-specific versus adult programs to transition-age youths. Psychiatr Serv 2012;63:592-6.
  55. Styron T, O’Connell M, Smalley W et al. Troubled youth in transition: an evaluation of Connecticut’s special services for individuals aging out of adolescent mental health programs. Child Youth Serv Rev 2006;28:1088–101.
  56. Johnston P, Bell PM, Tennet H et al. Audit of young people with type 1 diabetes transferring from paediatric to adult diabetic services. J Diabet Nurs 2008;12:106-8.
  57. Logan J, Peralta E, Brown K. Smoothing the transition from paediatric to adult services in type 1 diabetes. Practical Diabetes International 2006;23:106–108.
  58. Vidal M, Jansa M Anguita C et al. Impact of a special therapeutic education programme in patients transferred from a paediatric to an adult diabetes unit. Eur Diabet Nurs 2004;1:23–7.
  59. 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 doi: 10.1136/bmj.e3718.
  60. Prestidge C1, Romann A, Djurdjev O et al. Utility and cost of a renal transplant transition clinic. Pediatr Nephrol 2012;27:295-302.
  61. Kuchenbuch M, Chemaly N, Chiron C et al. Transition and transfer from pediatric to adult health care in epilepsy: a families’ survey on Dravet syndrome. Epilepsy Behav 2013;29:161-5.
  62. Felsenstein S1, Reiff AO, Ramanathan A. Transition of care and health-related outcomes in pediatric onset systemic lupus erythematosus. Arthritis Care Res 2015 May 4. doi: 10.1002/acr.22611.
  63. Summers SJ, Elliott S, McAdams S et al. Urologic problems in spina bifida patients transitioning to adult care. Urology 2014;84:440-4.
  64. Wiener LS, Zobel M, Battles H et al. Transition from a pediatric HIV intramural clinical research program to adolescent and adult community-based care services: assessing transition readiness. Soc Work Health Care 2007;46:1-19.
  65. Andemariam B, Owarish-Gross J, Grady J et al. Identification of risk factors for an unsuccessful transition from pediatric to adult sickle cell disease care. Pediatr Blood Cancer 2014;61:697-701.
  66. Freyer DR, Kibrick-Lazear R. In sickness and in health: transition of cancer-related care for older adolescents and young adults. Cancer 2006;107(7 Suppl):1702-9.
  67. Schwartz LA, Daniel LC, Brumley LD et al. Measures of readiness to transition to adult health care for youth with chronic physical health conditions: a systematic review and recommendations for measurement testing and development. J Pediatr Psychol 2014;39:588-601.
  68. Department of Health, NHS Careers. NHS Career Planner for Nurses. Lead nurse. (http://nursingcareers.nhsemployers.org/browse-segments/first-contact-access-and-urgent-care/level-8-management/lead-nurse.aspx; accessed 17th August 2015).
  69. Kelly D. Theory to reality: the role of the transition nurse coordinator. Br J Nurs 2014;23:888, 890, 892-4.
  70. Jurasek L, Ray L, Quigley D. Development and implementation of anadolescent epilepsy transition clinic. J Neurosci Nurs 2010;42:181-9.
  71. Joint Commissioning Panel for Mental Health. Guidance for commissioners of mental health services for young people making the transition from child and adolescent to adult services. Volume two: Practical mental health commissioning. March 2012. (https://www.rcpsych.ac.uk/pdf/JCPMH%20CAMHS%20transitions%20%28March%202012%29.pdf; accessed 15 September 2015).
  72. Children and Young People’s Health Outcomes Strategy. Report of the Children and Young People’s Health Outcomes Forum. July 2012. (https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/216852/CYP-report.pdf; accessed 15 September 2015).
  73. Brodie I, Goldman R, Clapton J. Mental health service transitions for young people. SCIE Research briefing 37. Social Care Institute for Clinical Excellence, May 2011. (http://www.scie.org.uk/publications/briefings/briefing37/; accessed 15 September 2015).
  74. Social Care Institute for Excellence. Mental health service transitions for young people. SCIE Guide 44. November 2011. (www.scie.org.uk/publications/guides/guide44/files/guide44.pdf; accessed 19th August 2015).
  75. Heery E, Sheehan AM, While AE et al. Experiences and outcomes of transition from pediatric to adult health care services for young people with congenital heart disease: a systematic review. Congenit Heart Dis 2015 Feb 9. doi:10.1111/chd.12251.
  76. Gray WN, Resmini AR, Baker KD et al. Concerns, barriers, and recommendations to improve transition from pediatric to adult IBD care: perspectives of patients, parents, and health professionals. Inflamm Bowel Dis 2015;21:1641-51.
  77. Plevinsky JM, Gumidyala AP, Fishman LN. Transition experience of young adults with inflammatory bowel diseases (IBD): a mixed methods study. Child Care Health Dev 2015;41:755-61.
  78. Department of Health. Self care – a real choice. 2005. (http://webarchive.national archives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4101702.pdf; accessed 19th August 2015)
  79. Sattoe JN, Bal MI, Roelofs PD et al. Self-management interventions for young people with chronic conditions: a systematic overview. Patient Educ Couns 2015;98:704-15.
  80. Department of Health. Your health, your way. A guide to long term conditions and self care. Information for healthcare professionals. April 2009. (http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_097586.pdf; accessed 19th August 2015)
  81. American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians; Transitions Clinical Report Authoring Group, Cooley WC, Sagerman PJ. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 2011;128:182-200.
  82. Lindvall K, Colstrup L, Wollter IM et al. Compliance with treatment and understanding of own disease in patients with severe and moderate haemophilia. Haemophilia 2006;12:47-51.
  83. Gray WN, Holbrook E, Morgan PJ et al. Transition readiness skills acquisition in adolescents and young adults with inflammatory bowel disease: findings from integrating assessment into clinical practice. Inflamm Bowel Dis 2015;21:1125-31.
  84. Beal SJ, Nye A, Marraccini A et al. Evaluation of readiness to transfer to adult healthcare: what about the well adolescent? Healthc (Amst) 2014;2:225-31.
  85. Okumura MJ, Ong T, Dawson D et al. Improving transition from paediatric to adult cystic fibrosis care: programme implementation and evaluation. BMJ Qual Saf 2014;23 Suppl 1:i64-i72.
  86. Asp A, Bratt EL, Bramhagen AC. Transfer to adult care – experiences of young adults with congenital heart disease. J Pediatr Nurs 2015; July 18 doi: 10.1016/j.pedn.2015.05.025
  87. Gibson-Scipio W, Gourdin D et al. Asthma self-management goals, beliefs and behaviors of urban African American adolescents prior to transitioning to adult health care. J Pediatr Nurs 2015 Jul 10. pii: S0882-5963(15)00212-2. doi: 10.1016/j.pedn.2015.06.012.
  88. Gorter JW, Stewart D, Cohen E et al. Are two youth-focused interventions sufficient to empower youth with chronic health conditions in their transition to adult healthcare: a mixed-methods longitudinal prospective cohort study. BMJ Open 2015;5:e007553. doi: 10.1136/bmjop-en-2014-007553.
  89. Ferris ME, Cuttance JR, Javalkar K et al. Self-management and transition among adolescents/young adults with chronic or end-stage kidney disease. Blood Purif 2015;39:99-104.
  90. Annunziato RA, Arrato N, Rubes M, Arnon R. The importance of mental health monitoring during transfer to adult care settings as examined among paediatric transplant recipients. J Paediatr Child Health 2015;51:220-2.
  91. Mitchell F. Facilitators and barriers to informed choice in self-directed support for young people with disability in transition. Health Soc Care Community 2015;23:190-9.
  92. van Staa A, Sattoe JN. Young adults’ experiences and satisfaction with the transfer of care. J Adolesc Health 2014;55:796-803.
  93. Molter BL, Abrahamson K. Self-efficacy, transition, and patient outcomes in the sickle cell disease population. Pain Manag Nurs 2015;16:418-24.
  94. Javalkar K, Fenton N, Cohen S et al. Socioecologic factors as predictors of readiness for self-management and transition, medication adherence, and health care utilization among adolescents and young adults with chronic kidney disease. Prev Chronic Dis 2014 Jul 10;11:E117. doi: 10.5888/pcd11.140072.
  95. Fernandes SM, O’Sullivan-Oliveira J, Landzberg MJ et al. Transition and transfer of adolescents and young adults with pediatric onset chronic disease: the patient and parent perspective. J Pediatr Rehabil Med 2014;7:43-51.
  96. Hanna KM, Weaver MT, Stump TE et al. Readiness for living independently among emerging adults with type 1 diabetes. Diabetes Educ 2013;39:92-9.
  97. Gravelle AM, Paone M, Davidson AG et al. Evaluation of a multidimensional cystic fibrosis transition program: a quality improvement initiative. J Pediatr Nurs 2015;30:236-43.52.
  98. Styron T, O’Connell M, Smalley W et al. Troubled youth in transition: An evaluation of Connecticut’s special services for individuals aging out of adolescent mental health programs. Children and Youth Services Review2006;28:1088–101.
  99. Crowley R, Wolfe I, Lock K, McKee M. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child 2011 Jun;96(6):548-53.
  100. An I. Pharmacology aspects during transition and at transfer in patients with epilepsy. Epilepsia 2014 Aug;55 Suppl 3:8-11.
  101. Bindels-de Heus KGCB, van Staa A, van Vliet I, Ewals FVPM, Hilberink SR. Transferring young people with profound intellectual and multiple disabilities from pediatric to adult medical care: parents’ experiences and recommendations. Intellect Dev Disabil 2013 Jun;51(3):176–89.
  102. Reid GJ, Irvine MJ, McCrindle BW, Sananes R, Ritvo PG, Siu SC, Webb GD. Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects. Pediatrics 2004 Mar;113(3 Pt 1):e197-205.
  103. Duguépéroux I, Tamalet A, Sermet-Gaudelus I, Le Bourgeois M, Gérardin M, Desmazes-Dufeu N, Hubert D. Clinical changes of patients with cystic fibrosis during transition from pediatric to adult care. J Adolesc Health 2008 Nov;43(5):459-65.

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