This is the current release of the guideline.

American Academy of Pediatrics (AAP) Policies are reviewed every 3 years by the authoring body, at which time a recommendation is made that the policy be retired, revised, or reaffirmed without change. Until the Board of Directors approves a revision or reaffirmation, or retires a statement, the current policy remains in effect.

Cerebral palsy

Counseling
Diagnosis
Management
Screening

Family Practice
Neurology
Nursing
Pediatrics

Advanced Practice Nurses
Allied Health Personnel
Health Care Providers
Health Plans
Managed Care Organizations
Nurses
Physician Assistants
Physicians

• To improve the overall quality of care of individuals with cerebral palsy and their families
• To review the aspects of care specific to cerebral palsy that a medical home should provide beyond the routine health maintenance, preventive care, and anticipatory guidance needed by all children
• To provide guidance on communication and comanagement with pediatric subspecialists and pediatric surgical specialists, therapists, and community developmental and educational teams
• To highlight the value of a primary care medical home from which care is initiated, coordinated, and monitored and with which families can form a reliable alliance for information, support, and advocacy from the time of diagnosis through the transition to adulthood

Children and youth with cerebral palsy and their families

Diagnosis/Screening

1. Developmental screening during well-child care, including persistence of infantile reflexes, delayed appearance of postural and protective reflexes, asymmetrical movements or reflexes, variations in muscle tone, and delays in emergence of motor milestones
2. Rigorous neuromotor examination and standardized instruments measuring neuromotor development
3. Dysmorphology or genetics consultation
4. Brain imaging
5. Gross Motor Function Classification System
6. Referral to a multidisciplinary neuromotor clinic or team

Management

1. Proactive care coordination
   • Monitoring, interpreting, and orchestrating comanagement with specialists and specialty teams
   • Communicating with therapeutic, educational, family-support, and other community resources
   • Advocacy with payers and providers
   • Pediatric ophthalmologic and audiologic consultation
2. Managing spasticity
   • Integrated physical therapy, orthopedic and orthotic management
   • Medication: benzodiazepines, including diazepam, clonazepam, and clorazepate dipotassium; dantrolene; baclofen; tizanidine hydrochloride; nerve and motor blocks and botulinum toxin
   • Dorsal rhizotomy
   • Nutrition management including gastrostomy tube feeding
   • Management of constipation and urologic difficulties
   • Dental care
   • Pain assessment and management
   • Neuropsychological and psychoeducational assessments
   • Counseling regarding complementary therapies including "hippotherapy" (therapeutic horseback riding); not recommended/unproven therapies such as hyperbaric oxygen, nutritional supplements, "patterning" techniques
3. Long term care
   • Scheduling visits
   • Physical accessibility of facilities
   • Documentation and insurance coding
4. Supporting children, youth, and families
   • Early intervention
   • Respite care
   • Planning for transition to adulthood
   • Financial planning

• Efficacy of intervention strategies on the overall quality of care of affected individuals and their families, on the well-being and realization of potential in children with cerebral palsy, and on family resilience and coping
• Efficacy of management of spasticity on deformity, function, pain, and ease of caregiving

Searches of Electronic Databases

Not stated

Not stated

Not stated

Not applicable

Review
Review of Published Meta-Analyses

Not stated

Not stated

Not applicable

A formal cost analysis was not performed and published cost analyses were not reviewed.

Peer Review

Not stated

1. Be aware of risk factors associated with cerebral palsy and incorporate neuromotor screening into routine developmental surveillance.
2. Provide prompt referral for early-intervention services for all children with alterations in motor development without waiting for diagnostic confirmation of cerebral palsy.
3. Partner with parents in the pursuit of a diagnosis and a culturally effective discussion of its implications for health, development, and family life.
4. Include screening for sensory impairments in the care plan for all newly identified children with cerebral palsy; brain imaging should be performed when appropriate.
5. Consider referral to a geneticist or pediatric neurologist in the presence of dysmorphic features, positive family history, or any atypical clinical characteristics.
6. Make your office a medical home that includes services such as care coordination, a written care plan, patient and family education, parent-to-parent referral, and advocacy.
7. After the definitive diagnosis of cerebral palsy, begin comanagement with a multidisciplinary neuromotor team and schedule regular chronic condition management visits in addition to regular preventive medical care.
8. Manage spasticity by using a "ladder" approach, starting with the least invasive interventions and adding treatments as needed.
9. Maintain vigilance for the new onset of comorbid conditions such as seizures, cognitive or learning disabilities, nutritional complications, etc.
10. Advocate with parents to school personnel about appropriate educational and therapeutic strategies including: physical, occupational, and speech therapy; nursing; and adaptive and assistive technology.
11. Be aware of and make timely referrals to community and state agencies providing support and services to which the child and family may be entitled.
12. Be a sensitive and useful resource for families in their exploration of complementary and alternative interventions for cerebral palsy.
13. Solicit feedback from families of children with cerebral palsy about the care and services provided in your office and how they could be improved.
14. Assess the quality of your medical home services for children with cerebral palsy and engage in systematic, incremental efforts to improve them.
15. Begin planning for the transition to adulthood with the child and family as early as possible, but no later than 12 years of age.

None provided

The type of evidence supporting each recommendation is not specifically stated.

• Primary care management of cerebral palsy provides an opportunity to implement the medical-home model and improve the overall quality of care of affected individuals and their families.
• Prevention of orthopedic complications, the achievement of alternative means of communication, the optimization of motor skills, and the close monitoring of nutrition and growth have positive effects on the well-being and realization of potential in most children with cerebral palsy. In addition, early responses to family-support needs may enhance resilience and coping and equip families with some of the "marathon skills" that caring for their child may require.
• Active and careful management of spasticity is important to decrease or prevent deformity, promote function, alleviate pain, and increase the ease of caregiving.

Adverse side effects of medications/treatments:

• Dantrolene - hepatotoxicity, weakness, gastrointestinal distress
• Tizanidine hydrochloride - sedation, dry mouth, hypotension
• Benzodiazepines (diazepam, clonazepam, clorazepate dipotassium) - sedation
• Baclofen - sedation
• Intrathecal baclofen - drug-related (hypotonia, weakness, nausea, vomiting, alteration in bowel and bladder function) and device-related (seroma, infection, catheter problems) complications. The most serious complication may result from overinfusion, usually related to programming errors, which may cause respiratory suppression and reversible coma.
• Gastrostomy tube feeding: excessive weight gain

The guidance in this report does not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate.

An implementation strategy was not provided.

Living with Illness

Effectiveness
Patient-centeredness

Not applicable: The guideline was not adapted from another source.

2004 Oct

American Academy of Pediatrics - Medical Specialty Society

American Academy of Pediatrics

Committee on Children With Disabilities, 2003-2004

Committee on Children With Disabilities, 2003-2004 Members: Adrian D. Sandler, MD (Chairperson); J. Daniel Cartwright, MD; John C. Duby, MD; Chris Plauche Johnson, MD, MEd; Lawrence C. Kaplan, MD; Eric B. Levey, MD; Nancy A. Murphy, MD; Ann Henderson Tilton, MD; W. Carl Cooley, MD (Past Committee Member); Theodore A. Kastner, MD, MS (Past Committee Member); Marian E. Kummer, MD (Past Committee Member)

Liaisons: Beverly Crider, Family Voices; Merle McPherson, MD, MPH, Maternal and Child Health Bureau; Linda Michaud, MD, American Academy of Physical Medicine and Rehabilitation; Marshalyn Yeargin-Allsopp, MD, Centers for Disease Control and Prevention

Staff: Stephanie Mucha, MPH

Not stated

This is the current release of the guideline.

American Academy of Pediatrics (AAP) Policies are reviewed every 3 years by the authoring body, at which time a recommendation is made that the policy be retired, revised, or reaffirmed without change. Until the Board of Directors approves a revision or reaffirmation, or retires a statement, the current policy remains in effect.

None available

None available

This NGC summary was completed by ECRI on November 18, 2004. The information was verified by the guideline developer on January 3, 2005. This summary was updated by ECRI Institute on May 8, 2007, following the U.S. Food and Drug Administration advisory on Zanaflex (tizanidine hydrochloride).

This NGC summary is based on the original guideline, which is subject to the guideline developer's copyright restrictions. Please contact the Permissions Editor, American Academy of Pediatrics (AAP), 141 Northwest Point Blvd, Elk Grove Village, IL 60007.