Module 1: Chronic Illness in Children; Children with Special Health Care Needs; Youth Transition

Question 1

The six elements of the Chronic Care Management (CCM) framework (Chronic Care Model)

Answer 1

Healthcare organization
Delivery system design
clinical Decision support
clinical Information systems
Self-management support
Community resources

HD DISC

Question 2

Self-management support

Answer 2

Interventions to facilitate patient self-Monitoring,
Medication adherence, healthy Lifestyle
decisions, and positive Coping skills

Help them CLiMMe

Question 3

Delivery system design

Answer 3

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)

Question 4

Clinical decision support

Answer 4

Interventions to reduce Variations in care, increase Adherence to guidelines, and increase accessibility of Specialist Expertise

VASE of decisions

Question 5

Clinical information systems

Answer 5

Use of information technology to support population management, monitor change implementation

Question 6

Community resources

Answer 6

Interventions to facilitate access to community programs that support disease self-management or address social needs

Transparency in screening & referral process

Question 7

Healthcare organization

Answer 7

Changes to provider organizations, regulating agencies, and payers that incentivize and remove barriers to improvement efforts

Question 8

What are the four roles of a practicing primary care provider in the context of IDEA?

Answer 8

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

Question 9

Decision-making is important in the context of pediatric chronic illness because children
and families need to

Answer 9

make decisions about burdensome and complex treatments on a regular
basis, and children must eventually learn how to make such decisions independently.

Question 10

Decision-making about chronic
illness management occurs in the
context of

Answer 10

significant developmental
change and individual and/or
family differences.

Looking through the family’s lense: Family-Centered Care

Question 11

The concept of decision-making
involvement (DMI) captures both
the

Answer 11

relational and developmental
aspects of decision-making and
allows for various ways for children
to be involved, regardless of capacity.

Question 12

The acknowledgment of the role of parents is critical because research has revealed that

Answer 12

children and adolescents want parental input about health-related decisions‍ and that decision-making authority, without support or guidance, can be burdensome.

Question 13

Specific strategies to facilitate children’s involvement include

Answer 13

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

Question 14

Children & Youth with Special Healthcare Needs (CYSHCN) as defined by HHS & MCHB

Answer 14

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

Question 15

Key Management Points r/t CYSHCN

Answer 15

Early ID/intervention
Realistic Developmental Impact & Milestones
Counseling for Child and/or Family; emotional support
School/agency involvement

Question 16

Prevention of Special Needs Conditions

Answer 16

Prenatal Care
Genetic Counseling PRN
Environmental Health

Question 17

ACA Benefits to CYSHCN

Answer 17

Children on parent’s HCP until 26
No denial with pre-existing conditions
Covers palliative care w/o forgoing potentially curative care

Question 18

IDEA benefits to CYSHCN

Answer 18

Special Ed must be available for free in public schools

Question 19

ADA & Section 504 benefits to CYSHCN

Answer 19

Reasonable accomodations in school, environmental and IEP

Question 20

Title V

Answer 20

Provides assistance w/ medical care and social services (school-to-work, babies can’t wait, etc).

Question 21

Goals of Medical Home with Children requiring Chronic Care

Answer 21

2/47 all-encompassing primary care
Transition to Adult
Adress quality of life issues

Question 22

Chronic illness education for parents should be…

Answer 22

Holistic, multivariate, and ongoing

Question 23

Med management and analysis

Answer 23

SCRiPT:
Side effects
Contraindications
Right medication, dose, frequency, route, and duration
Pediatric considerations
Transmission of information

Question 24

Consultation vs Referral

Answer 24

Ask for input on the care I provide vs send patient to someone more specialized for care

Question 25

The process of HCT can be divided

into 3 stages:

Answer 25

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

Question 26

Health care transition (HCT) is

Answer 26

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

Question 27

Several barriers to HCT

Answer 27

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.

Question 28

HCT Readiness Tools such as TRAQ & the UNC STARx investigate topics such as

Answer 28

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

Question 29

HCTRC HCT Model - 6 Core Elements

Answer 29

1 Transition policy
2 Transition and tracking and monitoring
3 Transition readiness
4 Transition planning
5 Transfer of care
6 Transfer completion

Question 30

Active planning for the termination of services will begin

Answer 30

at least a year prior to the transfer of care

Question 31

Regardless of the improvements a specific practice chooses to undertake to improve the transition process, important elements include

Answer 31

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.

Question 32

On the basis of expert opinion (level D), health care transition (HCT) preparation is a process that should start around

Answer 32

10 to 12 years of age for adolescents and young adults (AYA) with chronic conditions.