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Principles of GoodTransition Care
– developing the essential link between paediatric and
adult care Chris Kelnar
Chair, RCPE Transition Steering Group
Professor of Paediatric EndocrinologySection of Child Life and Health
University of Edinburgh
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Setting the scene…
• >90% of children with chronic illness now reach adulthood
• Major potential impact on achievement of developmental milestones
• Puberty heralds increases in the prevalence of mental health problems and substance misuse
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What is transition?Adolescence:“A painful passage o’er a restless flood”
(William Cowper, 1731-1800)
Transition:“A purposeful, planned process that
addressesthe medical, psychosocial and educational
needsof adolescents…with chronic physical and
medical conditions as they move from childcentred to adult oriented health care
systems.”(Society for Adolescent Medicine 2003)
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Evidence / examples of good practice
• Young people’s health with chronic illnesses deteriorates and their engagement with health services lessens around the time of transfer to adult services (McDonagh DoH 2006; Nakhla et al JPEM 2008)
• Liaison between paediatric and adult services has evolved by serendipity or through the enthusiasm of individuals
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Better Health, Better Care: Hospital Services for Young People in Scotland http://www.Scotland.gov.uk/Publications/2009/05/07130749/0
http://www.rcpe.ac.uk/clinical-standards/guidance/transition-medicine.php
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Why is guidance needed?
• Bridging the gap between paediatric and adult health care
• How best to treat the increasing number of young adults surviving serious childhood diseases….
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Generic Issues
• Core principles• Education and independence• Ethical issues• Inequalities in health• Remote and rural issues• Fertility and sexual health
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Core Principles for Transition – 1
• Transition is not synonymous with transfer – it must begin early and be planned carefully
• Successful transfer as the culmination of a period of planned transition care
• A transition programme should allow flexibility in relation to the specialty, hospital or team
• Each hospital should have a transition policy setting down the principles of transition from paediatric to adult healthcare
• Ages at final transfer will vary, but it normally should take place in the late teens
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Core Principles for Transition – 2
• The transition process should extend beyond the day of discharge/transfer from paediatric services, with ongoing care received in the adult sector being of equivalent quality and intensity
• Adult healthcare professional involvement may improve patient satisfaction, clinic attendance and / or health outcomes
• The transition process should address specific health problems and how they affect the young person’s social, psychological, educational and employment needs and opportunities
• Young people must be involved in developing their transition programme to enhance their sense of control and independence
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Education and Independence
• For young people– Knowledge about their disorder / self-management skills / other related life issues (housing / employment / benefits etc)
– Dedicated education sessions• For parents / carers
– Changing status with autonomy - “letting go” / adult service provision
• For healthcare professionals– Complexity of transition (medical / maturational / educational)
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Ethical Issues• Beneficence and non-maleficence• Justice
– justice1 – society’s benefits and burdens (including health care interventions) should be distributed equitably in the population
– justice2 – cases that are alike, in relevant respects, should be treated similarly; cases that are different, in relevant respects, should be treated differently
• Respect for autonomy– When and how to enter transition and achieve autonomy
– Confidentiality and ethical dilemmas
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Health Inequalities• Impacts of deprivation and / or social exclusion– Train staff to identify those at high risk
– Transition co-ordinator (“Key worker”)– Young people and their families actively involved
– Cultural mediators (ethnic minority / traveller /gypsy communities)
– Communication between services and 1ry / 2ry care
– Develop adult services where ‘none’ exist (e.g. neurodisability)
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Remote andRural Issues
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Sexual Health and Fertility
• Risks of pregnancy / fear of infertility
• When / how to explain condition and its implications to boy- or girl-friends
• Contraceptive advice• Contexts for gynaecology services
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Exemplar conditions –patient-specific issues
(1)• Cystic fibrosis
– Joint clinics seeing patients together– Advance handover of comprehensive medical records
– Stressful!– Patient empowerment often unsettles parents
• Chronic renal disease– Individual assessments and planning– Vocational / career provision discussions– Information packs about adult services / visits to adult facilities
– Buddy system– Formal process to say “goodbye”
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Exemplar conditions –patient-specific issues
(2)• Type 1 Diabetes Mellitus
– Shared philosophy of care between children’s and adult teams
– Specific local protocols– transfer at a time of relative health stability
– Easy access to psychological support– Age-banded clinics for young adults– Age of transfer should depend on physical and emotional maturity as well as on local circumstances
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Exemplar conditions –patient-specific issues
(3)• Long-term Survivors of Cancer
– Multidisciplinary team in age-appropriate environments
– Risk stratification of follow-up needs
– “Late effects” nurse specialist for support and co-ordination
– Active engagement of young people in their care plans
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Recommendations – 1• Young people should be given the opportunity to be seen without their parents
• Transition services must address the needs of parents / carers, whose role in their child’s life is evolving at this stage
• Transition services must be multidisciplinary and multi-agency
• Optimal care requires that a sound co-operative working relationship is developed between adult and paediatric services, particularly where the young person has complex needs with multiple specialty involvement
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Recommendations – 2• The co-ordination of transitional care is critical, requiring an identified co-ordinator (‘key worker’) who supports the young person until he or she is settled within the adult system. This could be an adolescent nurse specialist, transition co-ordinator, community nurse, youth worker, etc
• Young people should be encouraged to take part in transition / support programmes and / or put in contact with other appropriate youth support groups
• The involvement of adult physicians prior to transfer supports attendance and adherence to treatment
• Transition services must undergo continued evaluation – no one model fits all
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Where next? – 1• Young people have a right to expect accessible, age-appropriate services and high quality healthcare at every stage in their patient journey
• Development of clear transition policies within local health plans
• Creating descriptions of local adolescent services for young people, their families and healthcare professionals
• Targeting research efforts into different models of care, with particular emphasis on addressing the inequalities challenge, and delivery of support to young people living in remote and rural areas
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Where next? – 2• Promoting good practice for early adoption by other teams, particularly where there is limited reliable research evidence
• Seeking appropriate outcome measures to assess the impact of changing models of care
• Adding an awareness of the special needs of young people to all health-related education curricula and training programmes
• Developing specialist training for the emerging roles in adolescent medicine
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Make It Happen: Challenges (1)
• Delivery of high quality age-appropriate health care: patient-centred, structured, consistent, well-understood
• Universal needs – but practical service restructuring / development, and resource implications, will vary between specialties, clinics and healthcare systems
• Challenges of inequalities and delivery of support in / to remote and rural areas
• Importance of multiagency (including education and employment), as well as multidisciplinary, working and communication
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Make It Happen: Challenges (2)
• Identifying key workers, who may be from a variety of disciplines / backgrounds, who make a positive difference to families’ experiences of healthcare especially when needs are complex
• Delivery of high quality care as locally as possible
• ‘Marginalised’ groups (ethnicity, deprivation, social exclusion, mental/physical handicap)
• Lack of some key adult services• To embed transition care as a key part of adolescent health provision
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The goals…• The time of transfer to adult services should be the culmination of a period of planned and coordinated transition care and guided by the choice and physical, emotional and social maturity of the young person
• To embed transition care as a key part of adolescent health provision