Module 1: Chronic Illness in Children; Children with Special Health Care Needs; Youth Transition Flashcards
The six elements of the Chronic Care Management (CCM) framework (Chronic Care Model)
Healthcare organization Delivery system design clinical Decision support clinical Information systems Self-management support Community resources
HD DISC
Self-management support
Interventions to facilitate patient self-Monitoring,
Medication adherence, healthy Lifestyle
decisions, and positive Coping skills
Help them CLiMMe
Delivery system design
Interventions to promote Proactive/planned
care, Accessibility, and Team-based care
PAT delivery
(Interdisciplinary coordinated plan of care; planned visits; division of labor, empowered staff; use of care managers, patient advocates, resource specialists; telephone follow-up; home visits, community health workers)
Clinical decision support
Interventions to reduce Variations in care, increase Adherence to guidelines, and increase accessibility of Specialist Expertise
VASE of decisions
Clinical information systems
Use of information technology to support population management, monitor change implementation
Community resources
Interventions to facilitate access to community programs that support disease self-management or address social needs
Transparency in screening & referral process
Healthcare organization
Changes to provider organizations, regulating agencies, and payers that incentivize and remove barriers to improvement efforts
What are the four roles of a practicing primary care provider in the context of IDEA?
Identifying children in need of EI or SE
Sharing information with EI/school personnel
Meeting with EI/school personnel/parents (improving medication compliance and monitoring, behavioral outcomes, parent satisfaction, and avoidance of restraint situations)
using EI/school info in medical diagnostic or treatment Planning
MISPlan
Decision-making is important in the context of pediatric chronic illness because children
and families need to
make decisions about burdensome and complex treatments on a regular
basis, and children must eventually learn how to make such decisions independently.
Decision-making about chronic
illness management occurs in the
context of
significant developmental
change and individual and/or
family differences.
Looking through the family’s lense: Family-Centered Care
The concept of decision-making
involvement (DMI) captures both
the
relational and developmental
aspects of decision-making and
allows for various ways for children
to be involved, regardless of capacity.
The acknowledgment of the role of parents is critical because research has revealed that
children and adolescents want parental input about health-related decisions and that decision-making authority, without support or guidance, can be burdensome.
Specific strategies to facilitate children’s involvement include
Turntaking (eg, teaching and encouraging the children to take turns when speaking)
Directly asking the children for information about
symptoms or treatment routines
Soliciting questions from the children about decisions to be made
Asking the children for their opinions or concerns about a proposed treatment change
Checking for the children’s understanding about their illness and treatment regimen
Children & Youth with Special Healthcare Needs (CYSHCN) as defined by HHS & MCHB
1+ chronic physical/behavioral/emotional conditions requiring health+ services of a type/amt greater than the average child
Eligible for fed/state assistance
Need for services, not diagnosis
15.1% of children, 25% of outpatient visit
Key Management Points r/t CYSHCN
Early ID/intervention
Realistic Developmental Impact & Milestones
Counseling for Child and/or Family; emotional support
School/agency involvement
Prevention of Special Needs Conditions
Prenatal Care
Genetic Counseling PRN
Environmental Health
ACA Benefits to CYSHCN
Children on parent’s HCP until 26
No denial with pre-existing conditions
Covers palliative care w/o forgoing potentially curative care
IDEA benefits to CYSHCN
Special Ed must be available for free in public schools
ADA & Section 504 benefits to CYSHCN
Reasonable accomodations in school, environmental and IEP
Title V
Provides assistance w/ medical care and social services (school-to-work, babies can’t wait, etc).
Goals of Medical Home with Children requiring Chronic Care
2/47 all-encompassing primary care
Transition to Adult
Adress quality of life issues
Chronic illness education for parents should be…
Holistic, multivariate, and ongoing
Med management and analysis
SCRiPT: Side effects Contraindications Right medication, dose, frequency, route, and duration Pediatric considerations Transmission of information
Consultation vs Referral
Ask for input on the care I provide vs send patient to someone more specialized for care
The process of HCT can be divided
into 3 stages:
1) setting the stage: initiation of HCT services and transition readiness assessment
2) moving forward: ongoing provision of HCT services, and
3) reaching the goal: transfer of care and transition to
adulthood
Health care transition (HCT) is
the purposeful, planned movement of adolescents and young adults (AYA) with chronic physical and medical conditions from child-centered care to the adult-oriented health care system
Several barriers to HCT
First, it may be DIFFICULT for patients and their family members TO TRUST a new provider or ADAPT to a new practice.
Second, in adult-focused care, patients are expected to be more autonomous, so PARENTS may NOT always be ENGAGED (or welcomed) in the decision-making process.
Third, when AYA transfer to adult-focused health care, it is important that they and their family members are adequately PREPARED.
HCT Readiness Tools such as TRAQ & the UNC STARx investigate topics such as
Managing Medications/Treatment
Tracking Health Issues/Disease Understanding
Appointment Keeping/Ability to Use Health Resources
Talking with Providers/Communication w/ Physician
Managing Daily Activities/Self-Management Skills
HCTRC HCT Model - 6 Core Elements
1 Transition policy 2 Transition and tracking and monitoring 3 Transition readiness 4 Transition planning 5 Transfer of care 6 Transfer completion
Active planning for the termination of services will begin
at least a year prior to the transfer of care
Regardless of the improvements a specific practice chooses to undertake to improve the transition process, important elements include
1) getting HCT buy-in from patients and staff,
2) developing clearly defined goals, and
3) defining outcomes and/or metrics of interest to the group.
On the basis of expert opinion (level D), health care transition (HCT) preparation is a process that should start around
10 to 12 years of age for adolescents and young adults (AYA) with chronic conditions.
