children with medical complexity: a unique population with ... · children with medical complexity:...

Children with Medical Complexity: A Unique Population with Unique

Needs

Nancy Murphy MD, Professor and Chief, Division of Pediatric PM&R, University of Utah School of Medicine

Rishi Agrawal MD, MPH, Lurie and La Rabida Children's Hospital

Laurie Glader MD, Co-Director Cerebral Palsy and Spasticity Center, Boston Children's Hospital, Harvard Medical School

Eric Levey MD, Medical Director, Feeding Disorders Program, Kennedy Krieger Institute

AACPDM 2016 Breakfast Seminar BRK19

Disclosure Information BRK 19AACPDM 70th Annual Meeting | September 20-24, 2016

Speaker Name:

• Nancy Murphy MD

• Rishi Agrawal MD, MPH

• Laurie Glader MD

• Eric Levey MD

Disclosure of Relevant Financial Relationships

We have no financial relationships to disclose.

Disclosure of Off-Label and/or investigative uses:

We will not discuss off label use and/or investigational use in our presentation

Objectives

1. To define children with medical complexity (CMC) and identify the unique needs of these children and their families

2. To discuss functional approaches and goal-directed care for CMC and their families

3. To understand the value of comprehensive care programs for CMC

4. To apply functional and goal-directed approaches to high-value care for CMC, using 2 illustrative cases


Children with Medical Complexity:Who are they?

How are they different than children special healthcare needs?

Rishi Agrawal MD


Needs

- Substantial family-identified

service needs

- Significant impact on family (e.g.

financial burden)

Chronic Condition(s)

-Diagnosed (E.g. CCCs) OR

unknown, but suspected

- Severe and/or associated with medical fragility

Health Care Use

- High Resource Utilization

- Necessitating involvement of multiple service

providers

Functional Limitations

-Severe

-Often associated with technology

dependence

Cohen, Kuo, et al (2011) Pediatrics 127(3): 529-38


Identifying Children with Medical Complexity

• What is the purpose?• Clinical Program assignment

• Service allocation

• Research

• Policy Initiatives

• 2 categories of methods:• Patient Level (Bottom-Up)

• Administrative Data (Top Down)


Patient Level Identification

• Advantages• More detail available

• Can consider psychosocial factors

• Disadvantages:• Time Consuming

• Expensive

• 2 main methods• Program specific tools

• National Survey of Children with Special Health Care Needs


Program Specific Tools

• Locally developed tools • Complex Care Program eligibility

• Service eligibility (i.e. home care)

• Typically not validated

• Kuhlthau 2013 review of program common factors:• Condition, technology, hospitalization, family needs, social needs, specialists


Administrative Data

• CCC

• CRG

• NI

• TA

• PMCA


What are the unique medical, functional and social needs of CMC and their families?

Eric Levey MD


Common Medical Problems

• Technology dependence• Tracheostomy/ventilator• Gastrostomy/enteral tube feeds• Other: CSF shunts, intrathecal baclofen (ITB) pumps, vagus nerve stimulators

(VNS), colostomy and other ostomies

• Complex respiratory care: CPAP/Bi-PAP, airway clearance

• Severe neurologic disability

• Other• Congenital heart disease• Chronic kidney disease• Genetic disorders and syndromes


Medically Fragile (Frailty)

• Risk of acute decompensation due to illness or underlying condition

• Risk of developing associated and secondary problems due to underlying condition

• Risk of frequent and prolonged hospitalizations


Burden on Families• Time

• Direct care of child with medical complexity• Multiple appointments/provider visits• Time devoted to care coordination

• Financial strain• Co-insurance, co-pays, out-of-pocket expenses• Transportation• Time off from work/other compensation

• Mental health (stress, anxiety, depression)• Related to caregiving• Anxiety related to risk of acute decompensation• Financial-related

• Impact on relationships• Parent-parent• Parent-sibling(s)


Common Service Needs of CMC

• Multiple medical specialists• Rehabilitative or habilitative therapies• Specialized therapies• Special education & home teaching• Private-duty nursing• Home medical supplies and equipment• Specialized child care/day care• Respite care• Palliative care• Care coordination


Need for Care Coordination

• Between providers• Multiple specialists

• Home care

• Across settings• School, home, community

• During times of transition• Hospital to home

• Adolescent transition

• With onset of new problem(s)


Need for the Ultimate Medical Home


Shared-decision making and goal-directed care for care with CMC and their families

Laurie Glader, MD


Given the complex nature of caring for CMC, how can we provide efficient and meaningful care?


Variability in models of care delivery for CMC

• Medical Home

• Tertiary care based programs• Condition specific

• Comprehensive complex care

• Common themes • Identification of the range of needs

• Team communication

• Delegation of responsibility


Whatever we do, it must be meaningful: family centered care

• Shared decision making results in alignment of care provided and care desired by patient and family

• Associated with • Improved QOL

• Reduction of non-beneficial care

• Positive family outcomes

• Cost reduction


Discussing goals of care: best practices Share prognostic information

• How do you see your child’s condition?

• How do you handle information?

Understand fears• Are there symptoms that concern you?

• Are you worried that your child is suffering?

Understand goals• What do you hope for?

• Optimize health?

• Time at home?

• Comfort?

.

Elicit decision-making preferences• How do you make decisions?

• Who is involved?

Explore sources of support and strength• Social world

• Faith and spirituality

• Concrete resources

Bernaki RE, Block SD. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med. 2014 Dec; 174(12):1994-2003

Acknowledgment: Pediatric Advanced Care Team, Boston Children’s Hospital

Mapping priorities


International Classification of Functioning, Disability and Health (ICF)


http://www.who.int/classifications/icf/en/

Integrating the ICF into a complex care approach

• Prior discussion at AACPDM and Complex Care SIG

• Categorical considerations• Health condition and associated medical concerns

• Functional status

• Participation

• Environmental factors that impact health, function and participation• Technology

• Family systems

• Team management

• Specific personal factors (transition, access to health care insurance, etc.)


Management and decision-making

Identify the range of issues across categories

Determine priorities

Delegate responsibility

Maintain documentation system

Repeat …!

Value-Driven CareGood care doesn’t have to be expensive.

Nancy Murphy, MD


US Healthcare and CMC

• CMC account for less than 1% of all US children, but also for more than 30% of all pediatric healthcare costs; 5% of CMC account for 50% of total costs (Berry 2014)

• CMC account for 47% of Medicaid’s spending on all pediatric hospital care, and for 71% of the 30-day unplanned readmissions

• Hospitalizations for CMC increased by 32% (2004-09) (Berry 2013)• Despite high expenditures, families of CMC report low satisfaction

with health care (Kuo et al, 2015) • Fee-for-service models of payment do not offer value


Value = Outcome per Cost

• Cost = direct medical costs + direct nonmedical costs (out of pocket expenses, travel to hospital) + indirect costs (lost productivity)

• How do we measure Outcome?• 70% of CMC families report financial hardship and 50% report social

hardship (Thompson et al, J Peds 2016); Is hardship a cost driver?• Post-acute care is underutilized (Berry et al, JAMA Peds 2016)• CMC experience widely different patterns of utilization• Complexity = high risk for error (low value)


Value of Comprehensive Care for CMC

• Consultative, tertiary care hospital based program saw $10.7M reductions in charges (Gordon 2007)

• Primary comprehensive care model reduced Medicaid costs by $6,250/child/year (Mosquera 2014)

• 586 CMC over 7 years in consultative, tertiary care hospital based program saw cost reductions of $116M (Murphy)


Solutions

• Understand that CMC need high value health care, responsive to longitudinal needs

• Recognize the unique needs of CMC and their families

• Implement intensive inpatient and outpatient comprehensive care in team-based models of goal directed care

• Promote safety, rapid access to appropriate care, and continuity across acute inpatient, post-acute and outpatient settings

• Palliative care, post-acute care, telehealth, and strong parent-provider partnerships support value driven systems

• Design, implement and measure outcomes for models of care


Case 1: 5 yo boy with quadriplegic CP(Glader, Agrawal)

• Ambulates with maximal assistance in gait trainer over level surfaces

• Emerging hip dysplasia

• Eats well but growth is slowing down

• Single mom believes that he will outgrow his “slow” development and be “normal”

• Sleep is poor

• Not enrolled in school (just needs more time until he is ready)


Discussion

• Functional approaches to care

• Propose a discussion with family on goals of care

• Anticipated outcomes (value): will more care yield more outcomes?

• Ethical considerations


Case 2: 17yo female with leukodystrophy(Levey, Murphy)

• Functional dependencies in all domains

• Declining respiratory function with recurrent pneumonias and impaired airway clearance

• 78% ideal body weight despite maximally tolerated enteral feedings

• Neuromuscular scoliosis with chronic pain

• Parents request all available interventions


Discussion

• Functional approaches to care

• Propose a discussion with family on goals of care

• Anticipated outcomes (value): will more care yield more outcomes?

• Ethical considerations


Final Points

• CMC have complex functional, medical and psychosocial needs

• Goal-directed care brings highest outcome per cost (value)

• Comprehensive care programs offer opportunities to provide high-value care for CMC but are not sustainable in a fee-for-service system; prospective payment approaches best support care for CMC


children with medical complexity: a unique population with ... · children with medical complexity:...

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