Care of the Child and Youth With Spina Bifida: Potential Roles of the Pediatric Primary Care Provider
| Time . | Concerns . | Actions . |
|---|---|---|
| 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 |
| Time . | Concerns . | Actions . |
|---|---|---|
| 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.