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UWHC,

Nursing,

UW Health,Ambulatory Education,Educational Opportunities,Grand Rounds,Nursing Grand Round Presentation Video Archive 2012,Clinical Grand Rounds 2012,10/23/2012 - Challenges and Successes in Patient Transition from Pediatrics to Adult Specialty Care,Resources

Presentation

Presentation - UW Health, Ambulatory Education, Educational Opportunities, Grand Rounds, Nursing Grand Round Presentation Video Archive 2012, Clinical Grand Rounds 2012, 10/23/2012 - Challenges and Successes in Patient Transition from Pediatrics to Adult Specialty Care, Resources


1
Challenges and
Successes in Patient
Transition from Pediatrics
to Adult Specialty Care

Learning Objectives
 Illustrate the history and future of transitioning pediatric patients
with chronic special health care needs to adult specialty care,
including the organizational, state, and national efforts to improve
resources for patients and families.

 Explore challenges and successes of specialty care registered
nurses efforts to provide transition skills and goals for patients
and families through case studies.

 Propose innovative nursing interventions in addressing health
care transitions from pediatric to adult specialty care

2

3
Consensus Statement on Health Care
Transitions for Young Adults With Special
Health Care Needs
American Academy of Pediatrics, American Academy of Family Physicians,
American College of Physicians-American Society of Internal Medicine

The goal of transition in health care for young
adults with special health care needs is to
maximize lifelong functioning and potential
through the provision of high-quality,
developmentally appropriate health care
services that continue uninterrupted as the
individual moves from adolescence to
adulthood.

Pediatrics Vol. 110 No. Supplement 3 December 1, 2002 pp. 1304 -1306

Youth with special health care needs who
receive the services necessary to make
appropriate transitions to adult health care,
work and independence –
CSHCN age 12-17 years only

Nationwide Wisconsin
2005-06
2009-10

National Survey of Children with Special Health Care Needs
www.childhealthdata.org
41.2% 44.5%
40% 44.4%

State Title V
Children and Youth with Special Healthcare
Needs Program




To assure that children and youth with
special health care needs are:
Identified early
Receive high quality coordinated care
Families are supported
5

Advancing National Performance
Outcomes, by strengthening:
 Parent Leadership
 Medical Homes
 Health Insurance Coverage
 Screening and Identification
 Coordinated Services
 Transition to Adult Life

6

Transition Hub
 Partnership with AFCH
 Education and training
 Outreach to promote transition best
practice
 Web-based tool kit
www.healthtransitionwi.org (under
construction)

7


Contact information

 Kristin McArdle, MSW
890-7990
kmcardle@uwhealth.org

A nursing innovation in
the EMR for pediatric
transition-Pediatric
Sickle Cell Clinic

Sickle Cell Patient Transition
Goal
•promote a healthy and positive transition from
pediatric to adult hematology through sickle cell
transition guidelines that promote independent
medical self care
•transition begins in childhood with goals specific
to a patient’s age and development
•transition is a multi-disciplinary approach to care
that includes physician, nurse practitioner, nursing
and social work

Continuity of Care
•Transition guidelines are accessed through the EMR
•Guidelines are updated and reviewed at each clinic visit
•Transition goals are copied and pasted onto the after
visit summary
•Provide AVS to family/patient and fax to school
•Transition is not complete at a specific age; it is
directed by patient/family/provider output as well as
how well the patient meets the transition criteria





Future of Transition
 Transition begins at the first clinic visit for all children
and is revisited at every encounter
 EMR tab “transition” for all care providers to access
 Close communication between adult and pediatric
care team
 Adult hematology team notified in advance of
pediatric patients who are ready to transition,
including key facts about that patient’s health
 Visit to adult hematology clinic and introduction to
the team members


Challenges in Transition
 Parent/patient unwilling to transition
 Patient with severe disease involving
multiple hospitalizations making
transition difficult
 Lack of primary care
 Difficult psycho-social challenges-
missed appointments, lack of
transportation


Contact information
 Abby Roth, BSN, RN, CPHON
– 890-6581
– aroth@uwhealth.org


CANCER
SURVIVORSHIP –
PEDIATRICS

2012
 Progress:
– 1960 – children with ALL – 1% survival
– 2012 – five year survival for childhood
cancers – greater than 80%

– Rare – less than 1% of cancer diagnosed
every year
– 12,060 children under 15 years of age will
be diagnosed with cancer in 2012
– 1:300 children will develop cancer during
childhood


Childhood Cancers
 What are the most common types of childhood cancers?
 The types of cancers that occur most often in children are different
from those seen in adults. The most common cancers of children
are:
 Leukemia
 Brain and other nervous system tumors
 Neuroblastoma
 Wilms tumor
 Lymphoma
 Rhabdomyosarcoma
 Retinoblastoma
 Bone cancer (including osteosarcoma and Ewing sarcoma)


Childhood Cancer
Survivors
 300,000 patients
– 35% - < 20 years
– 46% - age 20 – 40 years
– 18% - > 40 years


Late Effects
 2/3 – some long term effect

 1/3 – severe long term effect

Late Effects
 Neurocognitive function
 Endocrine/growth/fertility
 Cardiac
 Pulmonary
 Renal
 Gastroenterology
 Musculoskeletal
 Psychosocial/emotional
 Second malignancies

Late Effects
 Disease
 Age at time of treatment
 Gender
 Therapy
– surgery
– chemotherapy
– radiation therapy

Challenges with Transition
Who will provide appropriate
adult follow up
 Insurance concerns
 Parent/patient fearful about
transition


Caring for Life Clinic
 Established 1989
 Treatment summary
 Education
– knowledge of
history
– advocacy
 COG risk based, exposure related
guidelines to direct follow up care
– survivorshipguidelines.org
– Healthlink

Summary
 Date of diagnosis
 Sex
 Names of all chemotherapy received
– cumulative doses of anthracyclines, alkylators
and bleomycin
– chemotherapy route of administration and
intensity of dose (high dose vs standard dose)
 Radiation fields and total doses
 Relevant surgical procedures
 HSCT – graft versus host disease


Contact information
 Peggy Possin, BSN, RN
– 890-8389
– ppossin@uwhealth.org

33
Challenges with
Transition in Pediatric
Neurosurgery

Hydrocephalus & Spina Bifida
 New Patient Population
–VP Shunts with valves since the
1970’s
–30 years ago, Spina bifida patients not
live to adulthood

Old goal—simply survive

New goal—maximize potential

34

Cognitive Challenges, Pivotal
Healthcare Decisions
Parents: “she’s not your average. . .”

11 to 16 year olds with disabilities
report:
– more difficulty with decision making
– more difficulty making and
communicating with friends



35

Pediatric Multi-disciplinary Spina
Bifida Clinic
–Neuropsychology
–Neurosurgery
–Occupational Therapy
–Orthopedics
–Physiatry
–Physical Therapy
–Urology
–Vocational Therapy
– Imaging

36

Challenges
 No adult multi-disciplinary clinic
for referral
–Consensus—patient, family, providers
–Adult providers, “pediatric” problems
–Multiple appointments—missed work
–Multiple locations—time &
transportation
37

Case #1
 12 year old girl—VP Shunts
–Ex preemie
– IVH
–1 month old—1st shunt
–12 operations in 1st year
–75 operations at UW/AFCH
–3 to 4 shunts now
–2 Med flight trips
38

Case #1 (continued)
 Current issues
–Dad’s job—caregiver
–No PCP—epi pen
–School RN—truant or sick?
–Social Development
–Cognitive Development
–CR Monitor at home
–Moved closer to UW
–Patient and Family Centered Care




39

Case #1 (continued)
 Future
–Dad’s job?
–Child’s job?
–F8/4 with “Pediatric” neurosurgeon
–Adult Model of Care
40

Case #2
 28 year old man—Spina Bifida
–Lives with mom
–Wheelchair
–No job
–Mom attends to ADLs
–Mention transition—mom cries
–Few adult SB providers
–No multi-disciplinary clinic—multiple
trips
–Too late to transition?
41

Case #2 (continued)
 Return to clinic in 2013
 If hospitalized
–Adult hospital
–Adult model of care
–New providers—no established care
42

Case #3

 22 year old woman—Spina Bifida
–Graduated high school June, 2012
–No job
–No college
–Misses high school
43

Case #3
 Return to clinic in 2013
 If hospitalized?
–Adult hospital
–Adult model of care
–New providers—no established care
44

Nursing Considerations
–Parents in decision making—included in
rounds in AFCH

–Expect pushback from parents

–Patients without typical growth &
development—separation,
independence

–Parents assist with ADLs

–Contact the Pediatric RNs

45

46
Contact information
 Lisa McLennan, BSN, RN
–Pediatric Neurosurgery
–Spina Bifida Clinic Coordinator
–Office: 890-6942
–Pager: 8735



Transition for the
Child with Spinal
Muscular Atrophy

What is SMA?
 Caused by SMN1 gene deletions or mutations
decreasing levels of SMN protein
 1 in 50 in the United States are carriers
 Autosomal recessive genetic disorder
 1 in 6,000 to 10,000 children are born each
year with SMA
 Results in loss of nerves in the spinal cord
 Proximal weakness greater than distal


Types of SMA
Wide range of physical function
Type 0 Decreased movements in utero
Type 1 Never Sit Independently
Type 2 Can sit with support
Cannot walk independently
Type 3 Walk independently


 OT/PT
 Vocational Counseling
 Dietary
 Respiratory Therapy
 Social Work
 MDA

Neuromuscle Disorder Clinic
 Pulmonology
 Orthopedics
 Neurology
 Cardiology
 Palliative Care
 Rehab Medicine





Things to Consider
 Children with SMA have normal intellect
 Sensory nerves are not affected, can’t
move but still feel pain
 Typically as children grow, they become
more physically independent, SMA is a
progressive disease and these children
will become more physically dependent

Things to Consider
 Nearly half of children diagnosed with
SMA Type I in the United States will
die before age 2
 Most will die of respiratory failure
 With aggressive respiratory care, we
anticipate many children with SMA
Type I to live past 2 years old


Things to Consider
 We see families at AFCH from
across the country
 As children live longer, it can be a
challenge to find adult providers
that are comfortable taking over
care

Challenges
 Each birthday is bittersweet for
families
 Each year increases physical
dependence
 Each year intellectual/cognitive
development progresses


Challenges
 Many children with SMA I require their
parents/caregivers to interpret their
speech
 Parents’ involvement and advocacy is
a major reason their children are alive
 Managing Expectations

Great Tools on Hand
 Booklets on transition are available on the
Pediatric Pulmonary Center website
www.uwppc.org/publications
 Provides age specific checklists of
discussion points for providers and
children with a Neuromuscle Disorder
 Starts at age 8 years old

Moving Forward
 Prepare families
that kids can and
will live and grow
 Increase focus
and education on
growth and
development


Moving Forward
 Encourage
recognition of
developmental
milestones and
need for social
independence

Moving Forward
 Adjust transition
guidelines to age
appropriate
activities
 Remember the
child during all
discussions

Gwen Judson BSN, RN, CPN
Coordinator for the Neuromuscle Disorder Clinic
gjudson@uwhealth.org
608-890-7337

61
Primary Care
Transition

62
Adolescent Clinic
Overview

 Patient population
• 12-23 years old





Initiation of Transition
 12 year physical
• Handouts for parents and youth
• Emphasis
• Youth to begin to take more responsibility
• Parent asked to leave the room for part of visit

63



Continued Transition
 18 year physical
• Continue as primary care provider
• May need to see university health
services occasionally
• Chronically ill youth may begin transition
at this time
66

Completion of Transition

 23 year physical
• New stage in life, time to transition
• Discuss with patient their needs/wants
for help with transition
67

Case Study 1
• 22 year old female
• H/o type 2 diabetes and obesity
• Hesitant to transition
• Transitioned specialty care first, then
primary care


68

Case Study 2
 23 year old female
• H/o fibromyalgia, migraines, BPD, mood
disorder, suicidal behavior
• Transitioned primary care during crisis

69

Thoughts for the future
 Importance of nursing for transition
• Assess for transition readiness
• Educate patients and families
• Encourage independence
• Facilitate care between providers

70

Contact information
Maria Standiford, BSN, RN
 263-6421
MStandiford@uwhealth.org
71