You say goodbye and I You say goodbye and I say hello:say hello:

Transition from pediatric to Transition from pediatric to

adult careadult care

Dr Elizabeth TullisToronto Adult CF CentreUniversity of Toronto

Faculty DisclosuresFaculty Disclosures No conflicts of interest related to this talkNo conflicts of interest related to this talk

Advisory board:Advisory board: Novartis Novartis Gilead Gilead MpexMpex

Research grants:Research grants: GSK GSK Gilead Gilead VertexVertex

Learning ObjectivesLearning Objectives After this session, learners will be able to:After this session, learners will be able to:

1.1. Recognise the difference between pediatric and Recognise the difference between pediatric and adult models of careadult models of care

2.2. List the barriers to transition from pediatric to adult List the barriers to transition from pediatric to adult carecare

3.3. Understand strategies to promote successful Understand strategies to promote successful transitiontransition

TransitionTransition is a process is a process

TransferTransfer is the moment of change is the moment of change

Life is a Life is a transitiontransition

Many Many transfertransfer moments moments

Start high schoolStart high school Start college/universityStart college/university First jobFirst job Move away from homeMove away from home

What does transition really mean?What does transition really mean?

TransitionTransition

““the purposeful, planned movement of the purposeful, planned movement of adolescents and young adults with adolescents and young adults with chronic physical and medical conditions chronic physical and medical conditions from child-centred to adult-oriented from child-centred to adult-oriented health care systems”health care systems” American Society for Adolescent Medicine J Adoles Health 1993American Society for Adolescent Medicine J Adoles Health 1993

Did not really become an issue until Did not really become an issue until 1980s1980s

Recognised as important but no clear Recognised as important but no clear model for health care transitionmodel for health care transition

Models of CareModels of Care

Pediatric CarePediatric Care Family-centredFamily-centred Protective/nurturingProtective/nurturing PrescriptivePrescriptive Focus on development and growthFocus on development and growth

Adult CareAdult Care Independence (emotional and financial)Independence (emotional and financial) Autonomy for healthAutonomy for health CollaborativeCollaborative EmpoweringEmpowering

Pediatric setting not ideal for adult Pediatric setting not ideal for adult patientspatients

Parental-type relationship reduces Parental-type relationship reduces independenceindependence

Adult issuesAdult issues Sexuality, pregnancy, work, financial Sexuality, pregnancy, work, financial

concernsconcerns Disease-related adult complicationsDisease-related adult complications

Chairs too smallChairs too small

Transition is a positive stepTransition is a positive step

GraduationGraduation Rite of passageRite of passage

In illness, transition implies hope for futureIn illness, transition implies hope for future

Transition can be challengingTransition can be challenging

Obstacles to successful transitionObstacles to successful transition

AdolescentsAdolescents Reluctant to leave known and trusted staffReluctant to leave known and trusted staff Delay in developmental steps (self perception as dependent)Delay in developmental steps (self perception as dependent) Fear of unknownFear of unknown Closer to deathCloser to death

ParentsParents Reluctant to relinquish control & involvementReluctant to relinquish control & involvement Fear of unknownFear of unknown Reluctant to leave team that “kept child well”Reluctant to leave team that “kept child well”

Obstacles to successful Obstacles to successful transition……2transition……2

Pediatric CaregiversPediatric Caregivers Hard to “let go” Hard to “let go” Lack of trust in adult servicesLack of trust in adult services Funding issues due to decreased pt numbersFunding issues due to decreased pt numbers

Adult CaregiversAdult Caregivers No knowledge or interest in “pediatric” disease in adultsNo knowledge or interest in “pediatric” disease in adults No training in adolescent issues No training in adolescent issues Lack of administrative supportLack of administrative support Financial liabilityFinancial liability

Obstacles to successful Obstacles to successful transition ….. 3transition ….. 3

Structural and service issuesStructural and service issues

Poor communication between hospitals for transfer of Poor communication between hospitals for transfer of medical recordsmedical records

Insurance coverageInsurance coverage Lack of appropriate space Lack of appropriate space Lack of institutional support for health professionals Lack of institutional support for health professionals

Transition in cystic fibrosisTransition in cystic fibrosis

Transition from pediatric to adult care is Transition from pediatric to adult care is considered part of standard practice considered part of standard practice CF Adult Care: Consensus Conference Report Chest 2004CF Adult Care: Consensus Conference Report Chest 2004

Both the American and Canadian CF Both the American and Canadian CF Foundations support transition to adult care Foundations support transition to adult care and have guidelines and policiesand have guidelines and policies

Well established multi-disciplinary model of Well established multi-disciplinary model of care for CF makes transition process easiercare for CF makes transition process easier

Transition in cystic fibrosisTransition in cystic fibrosis CF adults generally report no significant CF adults generally report no significant

concerns regarding transferconcerns regarding transfer

Surveys show patients satisfied with models Surveys show patients satisfied with models that have joint meeting(s) with pediatric and that have joint meeting(s) with pediatric and adult care providers prior to transferadult care providers prior to transfer

Parent’s concerns > Adolescent’s concernsParent’s concerns > Adolescent’s concerns

Pediatric caregiver’s concerns > Adult Pediatric caregiver’s concerns > Adult caregiver’s concernscaregiver’s concerns

Health team’s concerns > Patient’s concernsHealth team’s concerns > Patient’s concernsFlume et al Pediatric Pulmonology 2001Flume et al Pediatric Pulmonology 2001Anderson et al Pediatric Pulmonology 2002Anderson et al Pediatric Pulmonology 2002

Key elements for effective transitionKey elements for effective transition

Policy on timingPolicy on timing Flexible re transfer age, developmental milestones reached Flexible re transfer age, developmental milestones reached

Preparation and educationPreparation and education Transition starts at diagnosisTransition starts at diagnosis Understand disease and managementUnderstand disease and management Independent self care – recognising when sick & how to get Independent self care – recognising when sick & how to get

helphelp Teach skills of communication, problem solving, self Teach skills of communication, problem solving, self

advocacyadvocacy

Coordinated transfer process Coordinated transfer process Written plan Written plan Transition coordinatorTransition coordinator Transition clinics, overlap of careTransition clinics, overlap of care

Key elements for effective transitionKey elements for effective transition

Interested and capable adult serviceInterested and capable adult service Be an expert on the diseaseBe an expert on the disease Learn about normal development & adolescent Learn about normal development & adolescent

behaviourbehaviour

Administrative supportAdministrative support Medical summaryMedical summary Transfer of recordsTransfer of records Staffing resourcesStaffing resources

Evaluation of processEvaluation of process

Toronto transition program in CFToronto transition program in CF

~ 15-20 adolescents transfer to adult CF ~ 15-20 adolescents transfer to adult CF centre/yrcentre/yr

Transition starts at time of diagnosis with Transition starts at time of diagnosis with gradual shift of responsibility from parents to gradual shift of responsibility from parents to childchild

Transfer at 17-18 yrs (at school-leaving)Transfer at 17-18 yrs (at school-leaving) Pediatric RN and adult NP act as transition Pediatric RN and adult NP act as transition

coordinatorscoordinators

Transition rounds ~ 3 times/year where patients Transition rounds ~ 3 times/year where patients discussed with the pediatric and adult teamdiscussed with the pediatric and adult team

Example of “readiness for Example of “readiness for transition”transition” checklist checklist

Transition rounds : Transition rounds : Review of patients & handover of Review of patients & handover of

transition filetransition file

Toronto transition program in CFToronto transition program in CF Transition summary written by pediatric Transition summary written by pediatric

MD, nurse, dietitian, SW, physiotherapist MD, nurse, dietitian, SW, physiotherapist form the basis of adult centre chartform the basis of adult centre chart

““Transition clinics” to introduce adult team Transition clinics” to introduce adult team NP and MD attend clinic at pediatric hospitalNP and MD attend clinic at pediatric hospital

Transition booklet for patients/families & Transition booklet for patients/families & transition information on websitetransition information on website

Recognition at adult centre that true Recognition at adult centre that true adulthood not reached until age > 24 yrsadulthood not reached until age > 24 yrs

Transition booklet and CF Clinic Transition booklet and CF Clinic WebsiteWebsite

http://torontoadultcf.com

Advice to Adult CaregiversAdvice to Adult Caregivers First date - make a good first impressionFirst date - make a good first impression

Don’t overwhelm at the beginningDon’t overwhelm at the beginning

Don’t criticize the pediatric team directly or indirectlyDon’t criticize the pediatric team directly or indirectly

Inspire confidenceInspire confidence Being good is important, being trusted is essentialBeing good is important, being trusted is essential

Learn about the individual patient – good communication Learn about the individual patient – good communication of medical information from pediatric caregiversof medical information from pediatric caregivers

Stress positives of transferStress positives of transfer

““Don’t transfer patient if end stage Don’t transfer patient if end stage disease”….disease”….

Prevent dignity of adulthood and making Prevent dignity of adulthood and making end of life decisionsend of life decisions

May not predict “end stage” well (ie may live May not predict “end stage” well (ie may live another 2- 5 years)another 2- 5 years)

If not transferred, give message that they If not transferred, give message that they are different from peers and not worth are different from peers and not worth transition as life too shorttransition as life too short

““Don’t transfer patient if psychosocial Don’t transfer patient if psychosocial issues”issues”

Sends message that transition is an option, Sends message that transition is an option, not a part of life.not a part of life.Do you say “Let’s delay John’s transfer to high school as Do you say “Let’s delay John’s transfer to high school as his parents are going through a divorce”?his parents are going through a divorce”?

If not transferred, give message that they If not transferred, give message that they are different from peers are different from peers

Careful and clear communication between Careful and clear communication between teams and lots of support is what is needed teams and lots of support is what is needed

Apprehension NOT a reason to Apprehension NOT a reason to delay transferdelay transfer

What can we improve ?What can we improve ? Increase opportunities for training of adult subspecialists in Increase opportunities for training of adult subspecialists in

CF CF fellowships fellowships site visits to established centressite visits to established centres courses at conferencescourses at conferences

Provide opportunities for health care team to learn about Provide opportunities for health care team to learn about adolescent health and transitional care adolescent health and transitional care workshops, courses at conferences, web learning workshops, courses at conferences, web learning

More efficient transfer of information More efficient transfer of information electronic medical recordselectronic medical records

Education of internists of coding strategies to improve Education of internists of coding strategies to improve reimbursement of time intensive casesreimbursement of time intensive cases

Summary of Key PointsSummary of Key Points

Different models of care in pediatric vs adult settingsDifferent models of care in pediatric vs adult settings

Transition of care to adult setting is standard of care in CFTransition of care to adult setting is standard of care in CF

Smooth transition possible if:Smooth transition possible if: Pediatric care givers supportivePediatric care givers supportive Interested and knowledgeable adult team Interested and knowledgeable adult team Transition program in placeTransition program in place

Recommended Reading/Additional ResourcesRecommended Reading/Additional Resources Reiss et al. Health care transition: Destinations unknown. Pediatrics Reiss et al. Health care transition: Destinations unknown. Pediatrics

2002;110:1307-13142002;110:1307-1314

McLaughlin et al. Improving transition from pediatric to adult CF care. Pediatrics McLaughlin et al. Improving transition from pediatric to adult CF care. Pediatrics 2008;121:e1160-e11662008;121:e1160-e1166

Reiss et al. Health Care transition: Youth, family and provider perspectives. Pediatrics Reiss et al. Health Care transition: Youth, family and provider perspectives. Pediatrics 2005;115:112-1202005;115:112-120

Yankaskas et al. CF Adult Care: Consensus Conference Report. Chest 2004;125:1S-Yankaskas et al. CF Adult Care: Consensus Conference Report. Chest 2004;125:1S-39S39S

Flume et al. programs of transition in CF centres: Perceptions of pediatric and adult Flume et al. programs of transition in CF centres: Perceptions of pediatric and adult program directors. Pediatric Pulmonology program directors. Pediatric Pulmonology 2001;31:443-4502001;31:443-450

Anderson et al. Transition programs in CF centres: Perceptions of patients. Pediatric Anderson et al. Transition programs in CF centres: Perceptions of patients. Pediatric Pulmonology 2002;33:327-331Pulmonology 2002;33:327-331

Thank YouThank You