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TABLE 3

Care of the Child and Youth With Spina Bifida: Potential Roles of the Pediatric Primary Care Provider

TimeConcernsActions
Fetuses (prenatal) Diagnosis Consult with diagnostic team 
 Lesion: type and location Review obstetric plan 
 Other central nervous system findings (hydrocephalus, Chiari II malformation) Review findings and implications with family 
 Other physical findings (orthopedic, other) Discuss options and plan 
 Maternal and family stress and anxiety Referral to spina bifida team 
 Family choices and plan Update primary care provider and other provider knowledge base 
  Family education and support 
  Communicate among family and all professionals 
Newborns Stabilization Consult obstetric and neonatal teams, neurosurgery, others specialists 
 Protection of lesion Family support 
 Examination Monitor head growth 
 Surgical closure Neonatal screening and newborn hearing assessment 
 Hydrocephalus Discharge planning 
 Motor function Primary care and specialty follow-up 
 Bowel and bladder function  
 Orthopedic conditions  
 Maternal/family anxiety and depression  
Infants General health status Health care per Bright Futures recommendations 
 Growth Referral to spina bifida team and support group 
 Development Referral to early-intervention program 
 Immunizations Monitor head growth and shunt function 
 Spina bifida-specific concerns: hydrocephalus and shunt function, bowel and bladder function, UTI Assess for feeding or swallow problems
Discuss latex precautions 
  Supplemental Security Income, Medicaid, and Medicaid Waiver 
Preschool-aged children General health status Health care per Bright Futures recommendations 
 Growth and development Follow-up with spina bifida team and support group 
 Spina bifida-specific concerns: vision and strabismus, motor function and mobility, hydrocephalus and shunt function, bowel and bladder function, UTI Obtain early-intervention assessment, individualized family service plan
Developmental team evaluation
Discuss social inclusion and activities 
  Bracing and ambulation 
  Activity and weight management 
  Dental referral 
  Toileting 
School-aged children General health status Health care per Bright Futures recommendations 
 Growth and development Follow-up with spina bifida team 
 Weight control and healthy diet School transition, service and support, Section 504/individualized education plan 
 Spina bifida-specific concerns: motor function and mobility, hydrocephalus and shunt function, bowel and bladder function, tethered cord Screen for attention-deficit/hyperactivity disorder, learning disabilities, and executive function disorders
Bullying and safety 
  Self-care and independence 
  Physical activities and social group participation 
  Neurology and physical therapy follow-up 
Teens General health status Adolescent health care per American Academy of Pediatrics recommendations 
 Weight control and healthy diet Confidentiality and private visits 
 Sexuality Birth control and folic acid 
 Psychosocial stressors Health care transition 
 Spina bifida specific concerns: motor function and mobility, tethered cord Self-care and independence 
 Developing independence Driving and transportation 
  Spina bifida teen support group 
  Educational and vocational planning 
Adults General health status Identify health care resources 
 Weight control and healthy diet Health insurance, Social Security Disability Income 
 Spina bifida specific concerns: motor function and mobility, bowel and bladder management, skin care and pressure sores Education and employment
Living situation
Spina bifida adult support group 
  Transfer to accessible adult health care 
TimeConcernsActions
Fetuses (prenatal) Diagnosis Consult with diagnostic team 
 Lesion: type and location Review obstetric plan 
 Other central nervous system findings (hydrocephalus, Chiari II malformation) Review findings and implications with family 
 Other physical findings (orthopedic, other) Discuss options and plan 
 Maternal and family stress and anxiety Referral to spina bifida team 
 Family choices and plan Update primary care provider and other provider knowledge base 
  Family education and support 
  Communicate among family and all professionals 
Newborns Stabilization Consult obstetric and neonatal teams, neurosurgery, others specialists 
 Protection of lesion Family support 
 Examination Monitor head growth 
 Surgical closure Neonatal screening and newborn hearing assessment 
 Hydrocephalus Discharge planning 
 Motor function Primary care and specialty follow-up 
 Bowel and bladder function  
 Orthopedic conditions  
 Maternal/family anxiety and depression  
Infants General health status Health care per Bright Futures recommendations 
 Growth Referral to spina bifida team and support group 
 Development Referral to early-intervention program 
 Immunizations Monitor head growth and shunt function 
 Spina bifida-specific concerns: hydrocephalus and shunt function, bowel and bladder function, UTI Assess for feeding or swallow problems
Discuss latex precautions 
  Supplemental Security Income, Medicaid, and Medicaid Waiver 
Preschool-aged children General health status Health care per Bright Futures recommendations 
 Growth and development Follow-up with spina bifida team and support group 
 Spina bifida-specific concerns: vision and strabismus, motor function and mobility, hydrocephalus and shunt function, bowel and bladder function, UTI Obtain early-intervention assessment, individualized family service plan
Developmental team evaluation
Discuss social inclusion and activities 
  Bracing and ambulation 
  Activity and weight management 
  Dental referral 
  Toileting 
School-aged children General health status Health care per Bright Futures recommendations 
 Growth and development Follow-up with spina bifida team 
 Weight control and healthy diet School transition, service and support, Section 504/individualized education plan 
 Spina bifida-specific concerns: motor function and mobility, hydrocephalus and shunt function, bowel and bladder function, tethered cord Screen for attention-deficit/hyperactivity disorder, learning disabilities, and executive function disorders
Bullying and safety 
  Self-care and independence 
  Physical activities and social group participation 
  Neurology and physical therapy follow-up 
Teens General health status Adolescent health care per American Academy of Pediatrics recommendations 
 Weight control and healthy diet Confidentiality and private visits 
 Sexuality Birth control and folic acid 
 Psychosocial stressors Health care transition 
 Spina bifida specific concerns: motor function and mobility, tethered cord Self-care and independence 
 Developing independence Driving and transportation 
  Spina bifida teen support group 
  Educational and vocational planning 
Adults General health status Identify health care resources 
 Weight control and healthy diet Health insurance, Social Security Disability Income 
 Spina bifida specific concerns: motor function and mobility, bowel and bladder management, skin care and pressure sores Education and employment
Living situation
Spina bifida adult support group 
  Transfer to accessible adult health care 

Concerns and actions are not intended to be limited to a single time period but should be addressed and readdressed as part of ongoing health care across the life span.

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