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Improving Care for Children with Autism Spectrum Disorders: Lessons from Collaboration. James M. Perrin, MD Professor of Pediatrics, Harvard Medical School Director, Division of General Pediatrics MassGeneral Hospital for Children

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improving care for children with autism spectrum disorders lessons from collaboration

Improving Care for Children with Autism Spectrum Disorders:Lessons from Collaboration

James M. Perrin, MD

Professor of Pediatrics, Harvard Medical School

Director, Division of General Pediatrics

MassGeneral Hospital for Children

Director, Clinical Coordinating Center, Autism Treatment Network

disclosures
Disclosures

Director of the Clinical Coordinating Center for the Autism Treatment Network

Principal Investigator, Autism Intervention Research Network on Physical Health

Major center support from

Autism Speaks

Maternal and Child Health Bureau, Health Resources and Services Administration

autism spectrum disorders
Autism Spectrum Disorders

Complex neurobehavioral disorder(s) with many diverse manifestations

Cognition

Communication

Repetitive behaviors

Social interactions

Part of larger category of neurodevelopmental disorders

Current rates of ASD – 1:88 US children – 8-900,000 total

Neurodevelopmental disorders – at least 3 million in US

problems in care
Problems in Care

Early identification in pediatric care and community

Likely under-diagnosis of medical problems among children with autism

Barriers to communicating symptoms

Interpreting behaviors as inherent to ASD rather than arising from medical conditions

Access to comprehensive, family-centered, ongoing care

current treatments for children with asd
Current Treatments for Children with ASD

Intensive behavioral interventions

Good evidence that early intervention improves outcomes

Psychopharmacologic

Only specific indication: risperidone, aripiprazole

Treatment of co-existing conditions (ADHD, anxiety, other)

Specialized therapies (e.g., speech, occupational)

Numerous interventions with limited study

Little information to help families make choices or decisions

service network for children with asd
Service Network for Children with ASD

Fragmented

Variable (and often limited) access of parents to comprehensive and coordinated services

Diagnostic and evaluation services more available than ongoing treatment and follow up

Limited experience of many clinicians with ASD

Few clinical guidelines

Limited training

cystic fibrosis foundation model
Cystic Fibrosis Foundation Model

Standards for participating sites

Multidisciplinary staffing

Services for adults with CF

Peer review

Common data collection and patient registry

Quality assessment and improvement, with public (parent) disclosure

Development of clinical practice guidelines (and supporting evidence)

Active clinical research program

Results: dramatic improvement in lifespan and in quality of life

treating acute leukemia in 1960
Treating Acute Leukemia in 1960

Family support

Psychopharmacologic

Limited use of steroids

Treatment of co-existing conditions (infection, bleeding)

Numerous interventions with limited study

Little information to help families make choices or decisions

pediatric oncology collaboratives
Pediatric Oncology Collaboratives

Changing scientific beliefs

Common and carefully designed treatment protocols

Rapid enrollment of subjects from many sites

Tremendous improvement in survival and well-being

Vermont-Oxford Network

NICUs collaborating, comparing practices and outcomes

autism treatment network
Autism Treatment Network

Our Vision:

To improve the lives of all children with ASD and their families by making a high quality, comprehensive, and multidisciplinary continuum of care accessible within local communities

atn mission
ATN Mission

The mission of the Autism Treatment Network (ATN) is to promote a sustainable national system of community accessible programs offering state-of-the-art comprehensive and coordinated medical care for all children and adolescents with autism spectrum disorders (ASD), and to develop evidence and support the improvement of medical care for these children and their families

autism treatment network goals
Autism Treatment Network Goals

Quality: Improve the quality of medical care for children and adolescents with ASD

Access: Increase the availability of a comprehensive, coordinated, longitudinal care model for all children with ASD

Research: Advance the evidence base and research on medical issues in order to provide better care for children with ASD

Leadership: Become the leading clinical network on medical issues related to ASD

key network elements
Key Network Elements

Major infrastructure funding from consumer-driven philanthropy – Autism Speaks

Parent involvement in all sites and national parent council

common care standards
Common Care Standards

Agreement on initial evaluation of children with ASD

Common areas to assess

Willingness to collaborate on common care standards

guidelines development
Guidelines Development

Gastroenterology

constipation

Sleep

insomnia

Medication choice for ADHD symptoms

toolkits
Toolkits

Dental professionals toolkit

Sleep toolkit (parents)

Medication decision aid (parents)

Blood draw toolkits (professionals and parents)

All available via Autism Speaks/ATN website

patient registry
Patient Registry

>4,500 children and youth now enrolled

Increasing follow up data available

Can help to

Clarify and quantify current practices

Explore differences in practice and associations with outcomes

Assess performance characteristics of ATN

gi sleep and behavior
GI, Sleep, and Behavior

Children with sleep problems and/or GI symptoms

substantially higher scores on internalizing and subscales of the Child Behavior Checklist

significantly increased (daytime) irritability, lethargy, strereotypy (not GI), and hyperactivity on the Aberrant Behavior Checklist

quality of life
Quality of Life

Using the Pediatric Quality of Life Questionnaire (PedsQL™)

Children with ASD had much lower scores than children in normative sample and children with other chronic conditions, especially in

Social and emotional functioning

autism intervention research network on physical health
Autism Intervention Research Network on Physical Health

Funding from the Health Resources and Services Administration, beginning 2008

Builds on base of the ATN

Substantial investment in

Clinical research to answer the questions that parents raise

Efforts to standardize and improve practices

Encouraging younger investigators and clinicians

Disseminating findings to parent and clinical communities

air p studies 2008 2011
AIR-P Studies 2008-2011

Diet and Nutrition

  • Systematic Studies of Under and Overnutrition among Children with ASD
  • Iron Deficiency and Sleep Disorders in ASD

Sleep

  • Parent-Based Sleep Education Program for Children with Autism Spectrum Disorder
  • Relation of Sleep Disturbance in Autism Spectrum Disorder to Psychiatric and Behavioral Co-morbidities

Metabolism and Biomarkers

  • Prevalence of Creatine Deficiency Syndromes in Children with ASD
  • Maternal Cholesterol and Autism

Behavioral Outcomes

  • The Autism Impact Measure
air p renewal 2011 2014
AIR-P Renewal 2011-2014

Metformin Study

Iron and Sleep Study

Functional GI Study

GI Stress

ER Services

improving quality of care
Improving Quality of Care

Major initiative supported by the National Initiative for Children’s Healthcare Quality

Developing skills in continuous quality improvement

Adding measures of improvement in clinical status (e.g., sleep)

Improving the system of care (wait times, access)

measuring outcomes in neurodevelopmental disorders
Measuring Outcomes in Neurodevelopmental Disorders

Health Condition (disorder/disease)

Body function

& structure (Impairment)

Activities

(Limitation)

Participation

(Restriction)

Environmental Factors

Personal Factors

domains of assessment
Domains of Assessment

Clinical measures/indicators

Seizure frequency

Others

Functioning (in developmentally appropriate ways) (WeeFIM, PEDI, FSIIR)

Includes participation

Quality of life (PedsQL, CHQ, Disabkids)

Measuring views of consumers (or proxies)

Generic or specific QoL

Parent and child

medical home systematic review
Medical Home Systematic Review

33 articles from 30 distinct studies

6 RCTs

1 pre-post with comparison; 4 without

3 cohort

16 cross-sectional

Evidence for improved

Health status

Timeliness of care

Family-centeredness

Family functioning

Homer et al., Pediatrics, October 2008

the medical home and community service system
The Medical Home and Community Service System

Children and families receive services from many community sources

Education

Recreation

Transportation

Others

Medical home helps to coordinate key health-related services

slide33

Family-Centered Community-based System of Services

for Children and Youth with Special Health Care Needs (CYSHCN)

Perrin JM et al. Arch Pediatr Adolesc Med 2007;161:933-936.

chronic care model medical home components
Chronic Care Model/Medical Home Components

Patient registries, with severity assessment

Electronic health records

Care coordination

Patient information and involvement in decisions

Practice standards and decision support

Clinical teamwork

organizing and providing best care
Organizing and Providing Best Care

CF/leukemia models

Most care in centers of excellence (little in community primary care)

CF ~130 centers in North America

About 25,000 children with CF

About 900,000 children with ASD

Need for a different model of care

vision for the future
Vision for the Future

Every child with autism and other neurodevelopmental disorders can get comprehensive, coordinated, continuous care from a medical home in the community

Backup and (as needed) direct access to comprehensive subspecialty services (e.g., ATN center)

Consistent services across all sites

New and effective diagnostic and treatment methods – clear evidence for diet, sleep, metabolic, and other components of care

Answers to the questions that parents ask

what we need
What We Need

Model(s) that enhance primary care skills and involvement

Strong and available backup for (1o) physicians and parents

Effective communication

Payment to make the system work

the affordable care act helps
The Affordable Care Act Helps

Enhanced medical home

Improved payment for chronic care management

Support for team care in medical home

Essential benefits

Essential that they cover needed services!!

summary
Summary

Tremendous growth in rates of ASD and other neurodevelopmental disorders

Early intervention appears effective

Major impact on child lives and outcomes and parent quality of life

Need to organize services effectively and improve access

Importance of efforts in research, quality, and dissemination