Exploring the Care of Medically Complex Children

Transcription

1 Exploring the Care of Medically Complex Children Disclosure Wisdeen Wu, DO April 14, 2017 Wisdeen Wu, D.O. has no relationships with commercial companies to disclose. Learning Objectives At the end of this presentation the participant will be able to: 1. Recognize and classify a child with medical complexity 2. Describe medical home model and support services needed to support a medically complex child 3. Discuss ways of improving care for these children Children with Complex needs Other terms: Children with medical complexity (CMC), children with special health care needs (CSHCN), complex chronic conditions (CCC) Definitions: Condition expected to last longer than 12 months More than 2 organ systems Technology dependence Medication dependence Complex medical decision making (surgeries, goals of care) Children with Complex Needs Maternal and Child Health Bureau defines children with special health care needs (CSHCN) as those who have or are at increased risk for chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally. Reference: earn/ns CSHCN/data 1

2 Children with Complex needs Classification Growing population and proportion of pediatric care Goals of optimizing child s health, function, and quality of life Benefit from a comprehensive medical home model or care coordination Classification CMC Palliative Hospice CMC CCC numbers Last 6 months Clinic visits: > 700 Unique patients ~350 Most patients seen once every 6 months Hospice Palliative 2

3 Serving South Texas Sampling of Underlying Diagnoses Anoxic brain injury Congenital hydrocephalus Severe Cerebral palsy Septo optic dyplasia Mitochondrial disorders Muscular Dystrophies Spina Bifida VACTERL Cornelia De Lange Syndrome Treacher Collins syndrome DiGeorge syndrome Chromosomal abnormalities (Trisomy 18, Trisomy 21) Congenital Heart with complications Financial impact Medical Home They are high resource utilizers of medical system: Hospitalizations and ER visits Specialist and clinic visits Medical equipment Home based services nursing care and therapies Medical Neighborhood Medical Home Routine preventive care/well child care Specialty referrals (and prioritization) Medical equipment Medication management Nursing support services Therapy services School services 3

4 Preventive Care Preventive Care Vaccinations Growth/nutrition Using specific growth charts Disease Surveillance Published guidelines for Down Syndrome, Turner Syndrome, Williams syndrome, Neurofibromatosis, Cornelia de Lange, etc Mobility Wheelchair Adapted car seat Lift system Stander Orthotics Feeding Gastrostomy tube (what size and type) Feeding pump Syringes or feeding bags Respiratory Oxygen, pulse oximeter Nebulizer machine Suction machine Tracheostomy Ventilator Cough assist Vest Elimination Urinary catheters Colostomy Urostomy 4

5 Medication Management Updating medications at every encounter (hospitalization, discharge, clinic visits) Updating dosages Reviewing interactions Prior Authorizations Home remedies Nursing support Private duty nursing (PDN) Skilled nursing Provider care services School support Special education 504 plan Adaptive equipment School nurse support Medications Intermittent care (like colostomy or catheterization) Dietary adjustments Community Support Syndrome specific support group Online support groups Sibling support groups Family Religious groups Camps Resident education Acknowledge challenges in caring for this population Extending learning experiences Continuity 5

6 Quality Measures 1. Primary care 2. Patient/family centered care 3. Chronic care 4. Coordination of care 5. Transition of care Transition care to adult providers Community support and networking Parent navigators Written emergency care plan Our CCC team How to refer Physicians/Providers Nurse case managers Social Worker Dietician YOU How to refer Call KIDS (5437) for intake interview Secure health message in Sunrise Phone call References Kuo DZ, Houtrow AJ, AAP Council on Children with Disabilities. Recognition and Management of Medical Complexity. Pediatrics. 2016; 138 (6):e Cohen EC, Kuo DZ, Agrawal R, et al. Children With Medical Complexity: An Emerging Population for Clinical and Research Initiatives. Pediatrics. 2011; 127 (3): Child and Adolescent Health Measurement Initiative (2012). Who Are Children with Special Health Care Needs (CSHCN). Data Resource Center, supported by Cooperative Agreement 1 U59 MC from the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). Available at Accessed April 6, Bexar County Quickfacts. Accessed April 6, What is Medical Home? National Center for Medical Home Implementation. Accessed April 8, Elias ER, Murphy NA, and Council on Children with Disabilities. Home Care of Children and Youth with Complex Health Care Needs and Technology Dependencies. Pediatrics. 2012; 129 (5): Parent Guide for Feeding Tube Awareness Foundation. Accessed March 17,

7 References Thanks! Genetics home reference. Accessed April 9, Online Mendelian Inheritance in Man. Accessed April 9, Unique: Understanding Chromsome Disorders. Accessed April 9, Bogetz JF, Bogetz AL, Bergman D, et al. Challenges and Potential Solutions to Educating Learners About Pediatric Complex Care. Academic Pediatrics. 2014; 14 (6): Sbrocchi AM, Millar C, Henin C, et al. Complex care core curriculum for pediatric postgraduate trainees: Results of a North American needs assessment. J of Pediatric Rehab Med: An Interdisciplinary Approach. 2015; 8: Chen AY, Schrager SM, Mangione Smith R. Quality Measures of Primary Care of Complex Pediatric Patients. Pediatrics. 2012; 129 (3):