Mesa Redonda

Chronic Health Conditions: A vision for the US health care system

Heidi M Feldman MD PhDStanford University

November 19, 2010 10:15‐12:15

http://www.lpch.org/index.html

Main Points

• US health care system is not well organized to manage chronic conditions and disability

• Top priority for these individuals is inclusion and social participation

• Medicine/health supports this priority• Introduce ICF• Introduce chronic care model• Review priorities in US

Example

• Twins born at the limits of viability– Initial hospitalization for 5 months– Subsequent problems with feeding, growth, respiratory status

– Motor disability as toddler– Learning disability as school aged child– Mental health issues as adolescent– Yet, independent living and employment as an adult

Example

• Child with Down syndrome– Cardiac anomaly treated in infancy with surgery– Frequent otitis media, leading to tympanostomy tube placement

– Delayed language as toddler– Special education as school aged child and adolescent

– Supported employment and supervised community living as adult

Changing Demographics

• Marked increase in proportion of children with these conditions

• Increasing proportion of visits to MD relate to these conditions

• Organization of US health care is poorly suited to the needs of these children and their families

• We need to build medical‐educational‐social networks

Disability

• Condition lasting > 1 year• Requiring elevated services and supports• Presenting threats to function

– Actual functional compromise (activity limitations)– Requiring supports and/or services (medication, durable medical equipment, therapies) to maintain function

• Part of the continuum of life

Prevalence in US

• Has increased dramatically the result of improvements in health, medicine, technology

• 12.8% of children in the U.S. have “SHCN”• Additional 6% need care and not receiving it• Prevalence is higher among boys, school‐aged children, families with low incomes 

• 19% of families with children with special needs have more than one child with a special need

• About 50% of those with one disability have 2 or more disabilities

AAP, 2002

Impacts on the Child

• 90% of youth with life span conditions requiring elevated services now enter adulthood

• 45% lack access to a physician who is familiar with their health condition. 

• Many lack primary and specialty providers• High use of emergency system of care: 40% versus 25% of typical youth annually

http://www.medicalhomeinfo.org/health/trans.html#1

Impacts on the Adults

• 70% of adults with disabilities are unemployed

• They are 3 times more likely to live on income under US $ 15,000 (poverty levels) 

Impacts on Family

• 29.9% of families reported that the child’s condition caused family members to cut back or stop working

• 14.9% of families spent > 10 hours/week providing or arranging care

• Conditions likely to cause financial difficulties or change family activities

• Adverse outcomes concentrated among low income and uninsured

Van Dyck et al, 2004

Why the Need for a New Paradigm?

• Increased number of patients• Increased medical complexity of survivors of medical conditions and procedures

• Higher expectations for long‐term outcomes, want individuals to work, live independently

• Inadequacies of the old 20th century model– Fragmented, poorly coordinated; built for acute infectious disease

– Inefficient– Over‐ and under‐treatment– Safety concerns

Axioms for the New System

• Families and individuals are the true care providers; health care team consults, facilitates

• Physicians working alone cannot meet patients’needs

• Health care team requires many different professions

• Medical model cannot cover breadth of issues– Move away from diagnostic focus– Expand beyond goals of primary prevention or cure

Priority #1 ‐‐ Inclusion

• Definition: Opportunity for full participation in home, family, school and community.

• Must counteract the tradition of institutionalization

• Current movement in US began in 1960s with JFK who had sister with intellectual disability and mental health disorders– Funding for training health care providers, facilities– Deinstitutionalization

Why is Inclusion Important?

• Recognizes disability as part of the continuum of human experience

• Ethical and moral position—all individuals have worth

• Civil right• Promotes health, well‐being, self‐concept of individuals affected with these conditions

• Reduces costs and burdens to families and society

Priority #2 ‐‐ Productivity

• Definition: Able to function and contribute within the social group—family, school, community, employer. 

• Important to pair with inclusion to assure that inclusion consists of appropriate services and supports to assist function

• How to conceptualize function?

WHO Family of WHO Family of International ClassificationsInternational Classifications

ICDICD‐‐1010International Statistical International Statistical 

Classification of DiseasesClassification of Diseases & & Related Health ProblemsRelated Health Problems

ICFICFInternational ClassificationInternational Classificationof Functioningof Functioning,, DisabilityDisability

and Healthand Health

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

http://www.who.int/classifications/icf/training/icfbeginnersguide.pdf

Conceptual Model of the Conceptual Model of the ICF 2001ICF 2001

Body function&structureBody function&structure(Impairment)(Impairment)

ActivitiesActivities(Limitation)(Limitation)

ParticipationParticipation(Restriction)(Restriction)

Health Condition Health Condition ((disorder/diseasedisorder/disease))

Environmental Environmental FactorsFactors

Personal FactorsPersonal Factors

Function

• Represents the current situation– ICF Domains all have codes (b/s, d, e)– Granularity reflected in number of digits (1 to 4)

• Can be used for strengths and not simply needs or weaknesses

• Can be used to establish goals

Main Goal: Participation

• Domestic life• Interpersonal interactions and relationships

– Intimate– Familiar– Formal

• Major life areas– Education – Employment

• Community, social, civic life– Recreation and leisure– Religion and spirituality– Political life and citizenship

Transitional Goals: Activities

• Learning and applying knowledge• General tasks and demands• Communication

– Verbal– Non‐verbal

• Mobility• Self care

– Toileting– Dressing– Eating

Body Functions

• Mental functions– Intellectual– Sleep– Attention – Language

• Sensory functions• Voice and speech• Digestive system• Genitourinary functions

Environmental Factors

• Home and Family• Early intervention (birth to 3 years old)• Special education (3 to 21 years old)• Modifications of the natural and built environment

• Regular education, inclusion• Mental health services• Rehabilitation services (OT, SLP)• Financial services (Medicaid, SSI)

Priority #3 ‐‐ Healthy

• Health is defined in the context of inclusion and participation– Disability as neither illness and sickness– Multiple facets of health—wellness, acute problems, disability‐associated symptoms, anticipated natural history

– Health is not simply freedom from symptoms, also includes ability to be included and productive

– Key is that symptoms must not interfere with function at present or in future; secondary and tertiary prevention

• Framework for decision‐making

Requirements of Healthy

• Patient and family are knowledgeable• Appropriate and integrated health care team is in place

• Health systems capitalize on capabilities of the Information Age– Clinical information is well organized– Decision‐support readily available

• Health systems collaborate actively with community human service systems

Informed,  Informed,  Activated FamilyActivated Family

Productive Productive InteractionsInteractions

Community Community Resources & Resources & PoliciesPolicies

Health SystemsHealth Systems

Prepared, Prepared, Activated Activated 

Practice TeamPractice Team

Self Self management management 

supportsupport

Delivery Delivery System   System   DesignDesign

Decision Decision SupportSupport

Clinical Clinical Information Information SystemsSystems

Optimal Clinical & Functional OutcomesOptimal Clinical & Functional Outcomes

Improving Chronic Care Model

Implementing the Vision

• Comprehensive and integrated care plans• Regular assessment of current and anticipated function to establish appropriate goals, strategies

• Family‐ and person‐centered care• Effective care team• Care coordination• Anticipated needs, planned transitions

Comprehensive Care Plans

• Multi‐axial assessment– Life span and long‐term conditions– Acute, intermittent conditions– Developmental, mental health conditions– Family and environmental circumstances– Function

Assessment of Function

• Routine use of comprehensive tools– ABAS‐II– Vineland Adaptive Behavior Scales– Individual Educational Plans

• Establishing long‐term functional goals in terms of Participation

• High expectations

Family‐ and person‐centered care

• Ultimate goal setters are family and individual• Ultimate decision makers are family and individual

• Family‐ and person‐centered care requires– Complete and unbiased information– Family‐to‐family, person‐to‐person support– Counseling– Resources

Effective Care Team

• Medical sub‐specialists– MDs– Nurses

• Rehabilitation specialists– PT, OT, SLP, Rehab Counselors

• Mental health professionals• Social workers• Non‐health care professionals‐‐teachers• Community supports—coaches, religious leaders

Care Coordination

• Need models– Meetings– Effective written communication– Web‐sites

• Main Care Coordinator: Medical Home– Can primary care take this on?– What are current barriers?– How to overcome?

Summary

• We need new nomenclature for the expanding group of individuals with long‐term conditions requiring elevated services and supports

• Main goals are Inclusion, Productivity, and Health, in that order

• Implementing the vision will require new attitudes, systems, and especially care coordination

When you do things from your soul,you feel a river moving in you, a joy.

When actions come from another section,the feeling disappears.  ‐‐Rumi

Thank you.

Chronic Health Conditions: A vision for the US health care systemMain PointsExampleExampleChanging DemographicsDisabilityPrevalence in USImpacts on the ChildImpacts on the AdultsImpacts on FamilyWhy the Need for a New Paradigm?Axioms for the New SystemPriority #1 -- InclusionWhy is Inclusion Important?Priority #2 -- ProductivityWHO Family of International ClassificationsFunctionMain Goal: ParticipationTransitional Goals: ActivitiesBody FunctionsEnvironmental FactorsPriority #3 -- HealthyRequirements of HealthyImplementing the VisionComprehensive Care PlansAssessment of FunctionFamily- and person-centered careEffective Care TeamCare CoordinationSummaryThank you.