Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine
description
Transcript of Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine
![Page 1: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/1.jpg)
Julie A.Venci, MDInstructorDepartments of Medicine and PediatricsUniversity of Colorado, School of Medicine
Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine
![Page 2: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/2.jpg)
8:30 AM: 24 y/o female - Establish Care
8:20am: 24 year-old female – Establish Care
![Page 3: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/3.jpg)
24 y/o female- Establish Care
![Page 4: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/4.jpg)
24 y/o female- Establish Care
CP, non-verbal, mom gives
history, poor historian
- Born at 28 weeks, 6 months in
NICU
-Has a G-Tube, tracheostomy
-Hospitalized 4 times in the last
year- aspiration pna, sz
-Last saw pediatrician 3 years
ago.
-8 medications– needs refills;
all liquid suspensions.
-No medical records
-Exam- in wheelchair
![Page 5: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/5.jpg)
Objectives
•Define transition and the patient centered medical home
•Review how improved survival rates in childhood illnesses have changed how we practice medicine
•Understand the challenges of transition from multiple perspectives
•Present key elements to implementing a transition plan
![Page 6: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/6.jpg)
Transition Definition
“The purposeful, planned and timely transition from child and family-centered pediatric health care to patient-centered adult-oriented health care.”
Society for Adolescent Medicine, 1993
![Page 7: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/7.jpg)
TRANSITION
Patient Centered Medical Home
![Page 8: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/8.jpg)
Patient Centered Medical Home•Goals:
▫Better quality
▫Lower costs
▫Improved care experience
![Page 9: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/9.jpg)
![Page 10: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/10.jpg)
Children and Youth with Special Health Care Needs (CYSHCN)
“Those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health related services of a type or amount beyond that required by children generally.”
Department of Health and Human Services,
Health Resources and Services Administration
Maternal and Child Bureau
![Page 11: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/11.jpg)
Children and Youth with Special Health Care Needs (CYSHCN)• Asthma
• ADHD
• Diabetes mellitus
• Sickle cell disease
• Cerebral Palsy
• Cystic fibrosis
• Chronic kidney disease
• Inflammatory bowel disease
• Congenital heart disease
• Childhood cancer survivors
• Solid-organ transplant recipients
• Spina bifida
• Down syndrome
• HIV-AIDS
• Genetic and neuromuscular disorders
![Page 12: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/12.jpg)
Why Transition is Important
•Failure to recognize and plan transition may result in patients dropping out of care
•Poor transition processes are recognized to have a significant negative effect on morbidity and mortality in young adults with chronic health needs
![Page 13: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/13.jpg)
![Page 14: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/14.jpg)
No Longer Just a Childhood Illness
•~ 11.2 million children ( 15% of all US children) 0-17 years have special health care needs
▫500,000 CYSHCN turn 18 and enter adulthood in the US yearly
•Survival rates have increased for children with chronic illnesses
▫>90% survive beyond their 20th birthday
![Page 15: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/15.jpg)
Diagnosis Survival Info.
Childhood Cancers• 46% of survivors are 20-40 y.o.• 18% of survivors are > 40 y.o.
Cystic Fibrosis• Median survial 37 y.o.• 50% are > 18 y.o.
Congenital Heart Disease
• 85% reach adulthood• Over 1,000,000 living with CHD
Down Syndrome 55-year life expectancy
Hemophilia 60- year life expectancy
Sickle Cell Disease 66- year life expectancy
Spina Bifida > 80% reach adulthood
![Page 16: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/16.jpg)
Cystic Fibrosis Survival
![Page 17: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/17.jpg)
Consensus Statement on Health Care Transition 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
•Goal of Transition:▫ 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
![Page 18: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/18.jpg)
Healthy People 2020
•U.S. Dept. of HHS
•10-yr national goals to improve American health
•Increase % of children (including CYSHCN):
▫Receive care in family-centered, comprehensive, coordinated systems
▫Have discussed transition with health care provider
▫Have access to a medical home
![Page 19: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/19.jpg)
…So, how are we doing?
![Page 20: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/20.jpg)
National Survey of Children with Special Health Care Needs (NS-CSHCN):
• 2009-10 telephone survey of CYSHCN < 18 y.o.• Topics covered:
▫ Health and functional status
▫ Health insurance status and adequacy of coverage
▫ Access to health care — including types of health care services needed and any unmet needs for care
▫ Preventive medical and dental care, and specialty services received
▫ Family-centeredness of child’s health care and care coordination
▫ Access to Community-Based Services
▫ Transition to Adulthood
▫ Impact of child’s health on family
▫ Demographics of child and family
▫ Education, family structure, primary language spoken in the home
![Page 21: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/21.jpg)
40 42.1 Outcome successfully achieved Outcome not achieved
60 57.9
CSHCN age 12-17 years who receive services needed for transition toadult health care, work and independence
Nationwide vs. Colorado
![Page 22: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/22.jpg)
What are the challenges?
![Page 23: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/23.jpg)
Patient Challenges
•Many transitions at once:
▫Graduate HS, move away, new job
▫New relationships, new opinions about politics and religion
▫Choices about alcohol, tobacco, drugs, sexual activity
▫Focus on independence
![Page 24: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/24.jpg)
Family Challenges
•Close ties with pediatric caregivers
•Considered an adult at 18 y.o. privacy becomes an issue
•Lack of confidence in:
▫Young adult’s ability to adequately provide self-care
▫Adult medical team
![Page 25: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/25.jpg)
“If it is a child, they will give them the pain medicine without questions, but when you turn adult, it’s a different thing. Like you’re not really in pain, you just want medications.”
- Family member of a patient with Sickle Cell Disease
Reiss J, Gibson R, Walker R., Health Care Transition: Youth, Family, and Provider Perspective. Pediatrics. 2005; 115;112.
![Page 26: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/26.jpg)
Pediatric Care Team Challenges
•Tight bond with patient and family
•Limited contact with adult providers and services
•Lack of trust in adult healthcare system/providers
•Lack of training on how or when to start transition
![Page 27: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/27.jpg)
Institutional & System Challenges
•Aging out of treatment
• Insurance coverage/funding changes with age:▫ Limited options for personal health insurance
▫ Discontinued from parents’ health insurance
▫ Title V ends at 21
▫ Change in eligibility requirements: Supplemental Security Income (SSI), Medicaid
▫ Services funded by Medicaid decrease after 21
• Poor reimbursement for transition services
![Page 28: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/28.jpg)
Adult Care Team Challenges
![Page 29: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/29.jpg)
![Page 30: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/30.jpg)
Internists’ Perspectives
• Study goal: Understand concerns of adult providers regarding transition for young adult patients with childhood-onset conditions
• 2 stage mail survey from Aug. 2001-Nov. 2004:
▫Stage 1: Providers stated concerns regarding accepting care of transitioning young adult patients
▫Stage 2: Providers rated 45 items on a scale of how much the concern impacted ability to care for patient
![Page 31: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/31.jpg)
![Page 32: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/32.jpg)
Internists’ Transition Concerns
Systems issues
Patient’s psychosoci
al needs
Patient’s maturity
Family involveme
nt
Transition coordinati
on
My medical
Competency
![Page 33: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/33.jpg)
To review up to this point…
•CYSHCN are living longer and need a smooth, coordinated transition for improved health outcomes
•We are not doing a great job preparing patients for the transition to adult medicine
•As internists, we have a number of concerns and limitations when it comes to taking care of CYSHCN
![Page 34: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/34.jpg)
What should a transition plan look like?
TRANSITION
![Page 35: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/35.jpg)
• Expert opinion and consensus on practice-based implementation of transition for all youth beginning in early adolescence
• Roadmap for transition and decision-making algorithms for all youth beginning at 12 y.o.
![Page 36: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/36.jpg)
![Page 37: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/37.jpg)
Elements of Health Care Transition
1. Clinic Policies
2. Registry
3. Preparation
4. Planning
5. Transfer of care
6. Transition Completion
![Page 38: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/38.jpg)
1. Clinic Policies
•Pediatrics:
▫When will the transition process begin?
▫When is the transfer expected to happen?
•Adult Medicine:
▫What age will the clinic start seeing patient?
▫Outline of what to expect
![Page 39: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/39.jpg)
![Page 40: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/40.jpg)
2.Registry
•Pediatrics:
▫Identify transition-age youth, especially CYSHCN
▫Start by 12-14 y.o.
•Adult Medicine:
▫Identify young adults by level
of complexity
▫Monitor health care needs
![Page 41: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/41.jpg)
3. Preparation – Pediatric Team
•Prepare patients/family for success in adult care system & envision a future:▫ Visits without parents▫ Discuss illness, meds,
troubleshooting▫ Self-management skills
•Assess Readiness:▫ Transition Readiness Assessment
Questionnaire (TRAQ): 2 domains: self management and self
advocacy Identifies areas for more education
![Page 42: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/42.jpg)
![Page 43: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/43.jpg)
3. Preparation – Adult Team
•Discuss how to use/access services in adult model of care
•Continue to assess and address gaps in knowledge and skills
▫TRAQ
![Page 44: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/44.jpg)
4. Planning – Pediatric Team
•Health Care Transition Action Plan:▫Checklist of goals/expectations
prior to transfer•Portable Health Summary:
▫Chronological account of patient’s past and current medical problems
•Emergency Plan:▫Actions to be taken during
urgent/emergent events
![Page 45: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/45.jpg)
![Page 46: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/46.jpg)
![Page 47: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/47.jpg)
4. Planning – Adult Team
•“Get acquainted” visit
▫Up to one year before transfer
•Continue to use and update:
▫HCT Action Plan
▫Portable medical summary
▫Emergency care plan
![Page 48: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/48.jpg)
4. Planning – Team Discussion
•Insurance
•Guardianship
•Community resources
![Page 49: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/49.jpg)
5. Transfer of Care – What age?
•For most, between 18-21 y.o.
•Other factors to consider:
▫Is the patient medically stable?
▫Is the illness terminal?
▫Has transition readiness been assessed?
▫What skills are still needed to make a successful transition?
![Page 50: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/50.jpg)
5. Transfer of Care
•Pediatrics:
▫Direct communication with adult PCP and team
▫Transition package: Transfer letter
Health summary
•Adult Medicine:
▫Review history and talk to referring physician
▫Introduce patient to clinic
![Page 51: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/51.jpg)
6. Transition Completion
•Pediatric PCP and team remains a resource for adult PCP/team
![Page 52: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/52.jpg)
What are the future needs?
![Page 53: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/53.jpg)
Education and Training
•Pediatrics:
▫How to plan and implement transition
•Adult Medicine:
▫Adolescent rotation
▫Training: Insurance, guardianship, billing
▫Disease/condition specific guidelines: Grand Rounds
More in adult journals
![Page 54: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/54.jpg)
Institutional and Systems Support
•Recognition that transition planning is a necessary and important aspect of quality health care
•Funding for transition planning/resources
▫Ancillary staff to serve as liaison and coordinator of transition: Removes burden from 1 provider
![Page 55: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/55.jpg)
Research and Advocacy
•Identify best practices and cost-effectiveness for transition planning:
▫Show that transition programs or planning improves health outcomes, patient quality of life and savings for institutions.
•Adequate private and/or public health insurance to pay for transition services
![Page 56: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/56.jpg)
What we are doing at DH?
•Westside Pediatrics- Denver Health:
▫Center for Medicare and Medicaid Innovation (CMMI) grant
▫Patient Registry: Identifying current CYSHCN in the clinic, 18-
19 y.o. who need to be transitioned
Goal is to start transition planning by 14 y.o.
![Page 57: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/57.jpg)
Resources
•Family Voices:
▫Training: Insurance, billing and coding, medical record keeping
•Got Transition
•Specialty Clinics:
▫Adult Congenital Heart Disease Clinic
▫Denver Adult Down Syndrome Clinic
▫Special Care Clinic- Children’s Hospital Colorado
![Page 58: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/58.jpg)
“ Optimal health care is achieved when every person at every age receives health care that is medically and developmentally appropriate.”
A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs. Pediatrics 2002; 110;1304
THANK YOU!
![Page 59: Lost in Transition: Bridging the Gap Between Pediatric and Adult Medicine](https://reader036.fdocuments.us/reader036/viewer/2022062517/56813d0b550346895da6be62/html5/thumbnails/59.jpg)
Thank You!
•Tricia Mestas, RN, Westside Pediatrics- Denver Health
•Cynthia Peacock, MD, Baylor
•Laura Pickler, MD, Childrens Hospital Colorado
•Susan Cassell, Family Voices Colorado.
•Holly Batal, MD, Denver Health