Blog: Family Connections with Pediatrics
Cerebral palsy (CP) is the most common motor disorder of childhood. CP affects movement, senses, cognition, communication, behavior, and can lead to medical issues, such as seizures, breathing problems, feeding issues, and pain. Care is complex, layered and costly for families and providers.
Published in this month’s Pediatrics is a complete clinical report (10.1542/peds.2022-060055), and executive summary (10.1542/peds.2022-060056) document, ‘Providing a Primary Care Medical Home for Children With Cerebral Palsy’. It provides a guide to detection of CP; how to work with specialists caring for children with CP; how to manage the range of needs for a child with CP; and primary care for children with CP.
What is in the report and summary?
The clinical report gives an overview of CP, dives into the meaning of specific terms, lays out key aspects of the need for an integrated approach to care, and identifies gaps in and barriers to care.
The report creates a map, starting with how to identify CP and moving through all aspects of care throughout childhood. The report points out major ‘stops’ on the journey to provide a medical home for a child with CP, including:
Learning About Your Child’s Diagnosis
- Screening, monitoring, and diagnosis
- Prognosis: how CP might affect your child’s health and life.
- “Anticipatory guidance, health promotion, and prevention:” how to prevent disease and improve health. Topics include:
- How do you keep your child safe in motor vehicles?
- What kind of dental care does your child need?
- How do you make sure that nobody hurts or abuses your child?
- Intervention Planning
- What does your child need?
- How can you get help to make sure your child gets what they need? Examples include prescriptions or letters of medical necessity)
- Specific Interventions
- What are the different types of therapies and treatments? One example is early intervention.
- What is the evidence for these different types of therapies and treatments?
Medical Home Needs
- Orthotics and Durable Medical Equipment
- Adaptive Recreation
- Other Therapies, including proven and unproven alternative therapies
- Care Coordination
Different Types of Care
- Cognition and Learning
- Communication, Speech, and Language Delay
- Behavior and Mental Health
- Epilepsy and seizures
- Sensory Impairments- vision, hearing
- Pulmonary and Breathing Problems
- Sleep
- Nutrition, Growth and Gastrointestinal Problems
- Types of feeding
- Drooling
- Constipation
- Urinary Problems
- Bone Health
- Strengthening and Tone Management
- Orthopedic Considerations, including discussion of hips, spine, and scoliosis
- Pressure Injuries
- Pain
- Palliative Care
- Family Support
- Puberty and Sexual Health
Adult Care
- Health Care Transition and Transfer of Care to Adult Medical Care
There are also a few images and tables that explain some of the topics in the report as well as links to resources.
How can you use this executive summary and clinical report?
- If your child has CP or you think they may have CP, read this report. It is long but you can read the specific topics that relate to what your child is going through or needs.
- If there are parts of it that relate to the care of your child with CP, take this to your child’s doctor and use it to start talking about what you are seeing or concerns you have. It can be a good guide to help you work together to build each block of the medical home for your child with CP.
- If you are a part of a medical home project as a family leader, advisor, or partner with your state Title V or in a health system, bring this report. It creates a complete guide of how to make the promise of medical home real for all children, families, and health-care teams.
