Transitional Issues

1. Dr Paul Rolfe Consultant Paediatric Anaesthetist Cambridge University Hospitals NHS Foundation Trust Transitional Issues

2. Transition Process • Importance recognised for some time by Health, Education and social care • Fairly well developed by some medical disciplines • Perioperative care lags behind • Transition is not a specialist topic, it’s for everyone • We only see a “snapshot” • Health requirements of the young person in the broader context of family, relationships , education, work and social care Lam P-Y, Fitzgerald BB, Sawyer SM. Young adults in children’s hospitals: why are they there? Med J Aust2005; 182: 381-384

3. Transition is… “ a purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young people with chronic physical and medical conditions as they move from child-centred to adult oriented health care systems.” Based on Blum RW, Garell D, Hadgman CH et al. Transition from child-centred to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adol Health 1993: 14; 570-6.

4. Benefits of Well Managed Transition • Uninterrupted co-ordinated health care • Reduced psychological distress and anxiety • Significantly improved disease control • Prevention of medical catastrophe/premature death • Better follow up • Improved documentation of transitional issues • Vanelli M, Caronna S, Adinolfi B et al. Effectiveness of an uninterrupted procedure to transfer adolescents with type 1 diabetes from the paediatric to adult clinic held in the same hospital: eight year experience with the Parma protocol. Diabetes NutrMetab2004; 17: 304-308 • Flume PA, Taylor LA, Anderson DL et al. Transition programs in cystic fibrosis centers: perceptions of team members. PaediatrPulmonol 2004; 37: 4-7 • Reid GJ, Irvine MJ, McCrindle BW et al. 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; 113: 197-205

5. Adolescent Development • Vulnerable period with rapid Biopsychosocial changes • Development of abstract thinking, personal identity, “bullet proof” – increased health risk • Decision making • Discussion of risk • Relevance of timing of puberty • Only period we don’t deal directly with adults • ‘Resilience’

6. Transitional Care • Getting it right for children and young people (Sir Ian Kennedy 2010) • Commissioning a good child health service (RCGP March 2013) • Transition: getting it right for young people (DH 2006)

7. Kennedy Report 2010 • Transition is a “phenomenon created by the system” • Care from an organisational perspective rather than the needs of the child being care for. • Young person’s needs evolve but services change abruptly at arbitrary points • “Transition” often amounts to “transfer” • Experience “disruptive discontinuity”

8. Important Aspects of Transitional Planning • Professional and Managerial Attitudes • Differing perspectives clinicians • Appropriate environment • Effective dialogue between clinicians, managers, commissioners and other agencies • User consultation • Agreed policies on timing • Preparation period • Education programme

9. Communication • Clear Co-ordinator • Administrative support • Information transfer • Personal Health Record • Health Passports • “Fail Safe” mechanisms • Monitoring • Transition checklists • Ensure primary care involvement

10. Models of delivery

11. On Trac – Taking Responsibility for Adolescent/Adult Care THEMES: Self-advocacy Independent health care behaviours Sexual Health Social supports Educational/Vocational/Financial planning Health & Lifestyle

12. Relevance to Anaesthesia • Wider context of anaesthesia • Intensive care medicine • Obstetrics • Pain medicine • Operating theatre

13. Relevance to Anaesthesia • Wider context of anaesthesia • Intensive care medicine • Obstetrics • Pain medicine • Operating theatre If transitional care relates to ensuring a young persons needs are met within an adult orientated health care system then what are the challenges for us in the perioperative setting?

14. Case illustration 19 year old man (weight 33kg) Cerebral Palsy and global developmental delay Femoral osteotomy. Initial plan to care for in paediatric setting DOSA – admitted to adult orthopaedic ward as children's ward had no capacity Adult trained orthopaedic surgeon Adult trained anaesthetist No regional techniques Adult recovery care – severe pain PCA morphine regimen prescribed 6 hours later found unresponsive with RR 6 Mother had been activating PCA Given naloxone and sent to PHDU

15. Case illustration 19 year old man (weight 33kg) Cerebral Palsy and global developmental delay Femoral osteotomy. Initial plan to care for in paediatric setting DOSA – admitted to adult orthopaedic ward as childrens ward had no capacity Adult trained orthopaedic surgeon Adult trained anaesthetist No regional techniques Adult recovery care – severe pain PCA morphine regimen prescribed 6 hours later found unresponsive with RR 6 Mother had been activating PCA on son’s behalf Given naloxone and sent to PHDU Environment Service constraints Familiarity / Confidence Training / Support Technical ability Appropriate techniques Parental involvement Nurse/Carer expectations Education / training Patient assessment Clear communication

16. Themes that emerge • Familiarity with childhood disease • Technical and training issues • Paediatric vs adult care • Transitional policies for perioperative care Brennan LJ, Rolfe PM. Transition from pediatric to adult health services: the perioperative care perspective. PediatricAnesthesia2011: 21: 630-635

17. Familiarity with childhood disease • Congenital vs. Acquired • ↑ survival rates in conditions once limited to childhood • Move from familiar paediatric setting to a hospital with more adult orientated perioperative care • Potential solutions include • Flexible working at paediatric centres • Joint programmes at adult hospitals • Collaborative working e.g. neurosurgical centre • Urgent surgery away from base hospital • Disparity of transition arrangements of parent speciality and perioperative care • Family and young person as ‘expert’ in their condition Survey: Evidence of collaborative working in 79% centres

18. Technical and Training issues • Differing approaches between adult and paediatric anaesthetist • Regional anaesthesia • Under anaesthesia or awake? • Paediatric proportions • Analgesic regimens • Opioids • Epidural • Strategies for difficult airway management • Equipment • Training in appropriate technique • Pain Assessment • Cognitive impairment • Early warning scores • Recognition of the deteriorating patient • Ensuring an appropriate environment

19. Paediatric vs. Adult care • Aspects of perioperative care • Appropriate presence of parents and families • Equivalent support to that of play therapists • Inhalational induction • Topical local anaesthesia to facilitate intravenous induction • Sedative premedication • Appropriate environment • Important to recognise the benefits of adult orientated care

20. Transitional policies • Perioperative care lags behind other specialties • Transition plan in place by age 14 • Vital that there is anaesthetic input into transition planning, even if this is to advise on the degree of expertise required. • Flexible, safe and appropriate • Manage local and national service constraints • Outside of the UK, lack of affordable health care insurance Survey: A specific policy covering perioperative care was present in only 5% of hospitals. However transitional arrangements were thought to be adequate in 64%

21. Final thoughts • Transition is hugely important for all young people • The challenge for perioperative care • Consider best use of local (regional) services • Reconcilling the disparity of the transition arrangements of a parent specialty and anaesthesia • Collaborative working • Embrace flexibility – greater individualisation • Challenge rigid pathways and procedures Email: paul.rolfe@addenbrookes.nhs.uk