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TABLE 4

Primary Care Interventions Typically Provided to Children and Teenagers With Spina Bifida

Fetuses (prenatal) 
    Counsel families in planning and decision-making 
    Provide information on spina bifida 
    Options and assistance with family choices 
    Consult with obstetric, neonatal, and neurosurgical teams 
    Prenatal (fetal)/postnatal surgery 
    Discuss postnatal planning and treatment 
    Family support 
Newborns 
    Postnatal care and stabilization 
    Surgical repair of spinal lesion 
    Monitoring and surgery for hydrocephalus 
    Family support 
    Referral to multidisciplinary spina bifida term 
    Primary and specialty follow-up 
Infants 
    Provide early and frequent follow-up 
    Monitor hydrocephalus 
    Provide routine and diagnostic-specific primary care 
    Give family and sibling teaching and support 
    Discuss recurrence risk and prevention 
    Refer to early-intervention program 
    Communicate and coordinate with the spina bifida team 
Toddlers 
    Preventive and well-child care 
    Developmental monitoring 
    Mobility 
    Growth and weight management 
Preschool-aged children 
    Transition from early-intervention program to preschool program 
    Ambulation and mobility 
    Bowel and bladder program 
    Social inclusion 
School-aged children 
    Identify and characterize learning abilities 
    Ensure appropriate school-based services, Individualized Educational Plan or 504 plan 
    Monitor secondary conditions including latex allergy 
    Encourage physical activities, friends, and household responsibilities 
    Plan for educational transition 
    Encourage independent self-care and toileting 
Preteens 
    Begin health care transition planning 
    Advocate for physical activities, recreation and community inclusion, 
    Monitor progress in school 
    Address bullying and safety 
    Monitor growth and puberty 
    Encourage independence and self-advocacy 
    Develop and maintain friendships 
Teens 
    Continue transition and transfer process to adult care, activities and social participation 
    Educate regarding spina bifida and self-care 
    Provide private health care visits 
    Provide anticipatory guidance regarding sexuality and reproduction 
    Encourage independence in health care decision-making 
    Monitor growth and vital signs (blood pressure) 
    Encourage physical activities 
    Manage weight and nutrition 
    Encourage cardiopulmonary health and fitness 
Young adults 
    Transfer care to a provider of routine adult health care 
    Provide resources for specialty care: neurosurgery, orthopedics, urology, and others 
    Monitor weight and physical fitness 
    Provide information regarding finances such as Social Security Disability Income and health insurance 
    Monitor education and employment 
    Help to build and maintain friendships and social support groups 
    Monitor for deterioration and late-onset complications 
Fetuses (prenatal) 
    Counsel families in planning and decision-making 
    Provide information on spina bifida 
    Options and assistance with family choices 
    Consult with obstetric, neonatal, and neurosurgical teams 
    Prenatal (fetal)/postnatal surgery 
    Discuss postnatal planning and treatment 
    Family support 
Newborns 
    Postnatal care and stabilization 
    Surgical repair of spinal lesion 
    Monitoring and surgery for hydrocephalus 
    Family support 
    Referral to multidisciplinary spina bifida term 
    Primary and specialty follow-up 
Infants 
    Provide early and frequent follow-up 
    Monitor hydrocephalus 
    Provide routine and diagnostic-specific primary care 
    Give family and sibling teaching and support 
    Discuss recurrence risk and prevention 
    Refer to early-intervention program 
    Communicate and coordinate with the spina bifida team 
Toddlers 
    Preventive and well-child care 
    Developmental monitoring 
    Mobility 
    Growth and weight management 
Preschool-aged children 
    Transition from early-intervention program to preschool program 
    Ambulation and mobility 
    Bowel and bladder program 
    Social inclusion 
School-aged children 
    Identify and characterize learning abilities 
    Ensure appropriate school-based services, Individualized Educational Plan or 504 plan 
    Monitor secondary conditions including latex allergy 
    Encourage physical activities, friends, and household responsibilities 
    Plan for educational transition 
    Encourage independent self-care and toileting 
Preteens 
    Begin health care transition planning 
    Advocate for physical activities, recreation and community inclusion, 
    Monitor progress in school 
    Address bullying and safety 
    Monitor growth and puberty 
    Encourage independence and self-advocacy 
    Develop and maintain friendships 
Teens 
    Continue transition and transfer process to adult care, activities and social participation 
    Educate regarding spina bifida and self-care 
    Provide private health care visits 
    Provide anticipatory guidance regarding sexuality and reproduction 
    Encourage independence in health care decision-making 
    Monitor growth and vital signs (blood pressure) 
    Encourage physical activities 
    Manage weight and nutrition 
    Encourage cardiopulmonary health and fitness 
Young adults 
    Transfer care to a provider of routine adult health care 
    Provide resources for specialty care: neurosurgery, orthopedics, urology, and others 
    Monitor weight and physical fitness 
    Provide information regarding finances such as Social Security Disability Income and health insurance 
    Monitor education and employment 
    Help to build and maintain friendships and social support groups 
    Monitor for deterioration and late-onset complications 
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