Screenings for adults with spina bifida

The main guideline

The Spina Bifida Association published the fourth edition of its Guidelines for the Care of People with Spina Bifida as a series of open articles in 2020. The preventive care article says adults should get the usual age-based preventive services, and that clinicians should also watch for conditions common in spina bifida. It notes that the evidence is limited and most of its advice is expert consensus based on USPSTF recommendations. (SBA preventive care, 2020) It also says many offices lack adjustable exam tables, wheelchair scales and ways to measure height for people who cannot stand, which can make routine checks harder to get. (SBA preventive care, 2020) See screenings for people with disabilities.

Checks the guideline lists for adults

Check	When	Source
Kidney and bladder ultrasound	Every year, and as needed with repeated urinary infections	(SBA urology, 2020)
Serum creatinine (kidney blood test)	Every year; another kidney measure if muscle mass is low	(SBA urology, 2020)
Blood pressure	Every year	(SBA nutrition, 2020) (SBA preventive care, 2020)
Weight (arm span or lying height, wheelchair scale)	Every year	(SBA nutrition, 2020) (SBA preventive care, 2020)
Cholesterol (fasting lipid profile)	Men from 40, women from 50 or after menopause; any age with risk factors	(SBA nutrition, 2020)
Blood sugar (diabetes)	Ages 40 to 70 with a BMI over 25; earlier with risk factors	(SBA nutrition, 2020)
Skin checks for pressure injuries	Every day at home; asked about at visits	(SBA skin, 2020) (SBA preventive care, 2020)
Vision and hearing	As part of routine adult care	(SBA preventive care, 2020)
Depression and anxiety	As part of adult care	(SBA mental health, 2020) (SBA preventive care, 2020)
Sleep apnea	Asked about at adult visits	(SBA preventive care, 2020)
Cancer screening	Per USPSTF, with disability accommodations	(SBA preventive care, 2020) (SBA women's health, 2020)

Kidneys and bladder

The urology guideline says to get a kidney and bladder ultrasound every year in adults, and another one as needed if there are repeated urinary infections. It also says to get a serum creatinine test every year, and to consider another measure of kidney function if the adult has low muscle mass. (SBA urology, 2020) It explains that creatinine is limited in people who do not walk because of low muscle mass and may give a false sense of normal results, and that cystatin C or a nuclear medicine kidney test may be more accurate. (SBA urology, 2020) See kidney disease screening and kidney test results.

Blood pressure, weight, cholesterol and diabetes

The preventive care guideline lists high blood pressure, overweight and screening for metabolic syndrome, lipid disorders and diabetes among the checks at adult visits. It advises using an adjusted arm span or a lying height and a wheelchair scale for people who use wheelchairs. (SBA preventive care, 2020) The nutrition guideline says blood pressure should be checked every year, that BMI is largely inaccurate for people with paralysis, and that cholesterol screening is for men 40 and older and women 50 and older or after menopause, or at any age with risk factors such as smoking, diabetes, high blood pressure or a family history of early heart disease. It lists blood sugar screening for adults aged 40 to 70 with a BMI over 25, and earlier for people at higher risk. (SBA nutrition, 2020) See blood pressure readings: what they mean, cholesterol test by age and A1C and blood sugar test results.

Skin

The NHS says open spina bifida can cause loss of feeling in the legs and around the bottom, so a person may not feel pain or heat. (NHS) The skin guideline says to inspect the skin every day, and lists using a wheelchair, a higher level of lesion and bladder incontinence among the risk factors for pressure injuries. (SBA skin, 2020) The preventive care guideline asks about skin breakdown and pressure injury at adult visits. (SBA preventive care, 2020) For skin cancer, see skin checks by age.

Bones

The preventive care guideline lists osteoporosis among the conditions to watch for at adult visits, but none of the guideline articles above sets a bone density scan schedule for adults with spina bifida. (SBA preventive care, 2020) The nutrition guideline says people who do not walk, are less active or have contractures are at higher risk of fractures. (SBA nutrition, 2020) See bone density test: how often and osteoporosis screening.

Vision, hearing, sleep and mood

The preventive care guideline includes vision and hearing screening and dental care for adults, and notes that eye problems such as crossed eyes and optic nerve changes are common in spina bifida. It also lists sleep apnea and depression and anxiety among the things to check. (SBA preventive care, 2020) The mental health guideline says to screen adults for depression or anxiety. (SBA mental health, 2020) See eye exams by age, hearing tests by age, sleep apnea screening and mental health screenings by age.

Cancer screening

The preventive care guideline says cancer screening should follow the USPSTF, with the changes needed for physical or intellectual disability. (SBA preventive care, 2020) The women's health guideline says women should be aware of their breasts and report changes, take part in breast cancer screening programs, which for many will begin at age 45 or sooner with a family history, and keep up cervical cancer screening in line with local guidelines. It notes that women with physical disabilities face barriers that lower screening rates. (SBA women's health, 2020) See cancer screenings by age, breast cancer screening, cervical cancer screening and colorectal cancer screening.

When to contact a provider

MedlinePlus, Myelomeningocele, when to contact a medical professional (written for children): (MedlinePlus encyclopedia)

Contact your child's provider if:

A sac or open area is visible on the spine of a newborn infant
Your child is late in walking or crawling
Symptoms of hydrocephalus develop, including bulging soft spot, irritability, extreme sleepiness, and feeding difficulties
Symptoms of meningitis develop, including fever, stiff neck, irritability, and a high-pitched cry

Where they differ:

Breast cancer screening start. The spina bifida women's health guideline says screening will begin at age 45 for many people, (SBA women's health, 2020) while the USPSTF recommends a mammogram every 2 years from 40 to 74. (USPSTF breast, 2024)
Diabetes screening age. The spina bifida nutrition guideline lists screening from 40 to 70 with a BMI over 25, (SBA nutrition, 2020) while the current USPSTF statement, from 2021, starts at 35 for adults with overweight or obesity. (USPSTF diabetes, 2021) The nutrition guideline also says BMI is largely inaccurate for people with paralysis. (SBA nutrition, 2020)
Bone density. The spina bifida guidelines mention osteoporosis risk but give no scan schedule, (SBA preventive care, 2020) and the USPSTF recommendation covers women 65 and older and younger postmenopausal women at higher risk, with insufficient evidence for men. (USPSTF osteoporosis, 2025)
Kidney blood tests. Creatinine is the usual kidney test, but the urology guideline says it can look normal in people with low muscle mass and suggests another measure for them. (SBA urology, 2020)

Your doctor decides what your result means for you.

Questions people ask

How often should adults with spina bifida have kidney tests?

The Spina Bifida Association urology guideline says to get a kidney and bladder ultrasound and a serum creatinine blood test every year in adults. If the adult has low muscle mass, it says to consider another measure of kidney function, since creatinine can look normal when it is not. (SBA urology, 2020)

Do the usual cancer screenings apply?

Yes. The Spina Bifida Association preventive care guideline says cancer screening should follow the USPSTF, with the changes needed for physical or intellectual disability. Its women's health guideline says women should take part in breast and cervical cancer screening programs. (SBA preventive care, 2020) (SBA women's health, 2020)

Is blood pressure checked more often?

The preventive care guideline lists high blood pressure among the conditions to screen for at adult visits, and the nutrition guideline says blood pressure should be checked every year in adults. (SBA preventive care, 2020) (SBA nutrition, 2020)

Is a bone density scan recommended?

The preventive care guideline lists osteoporosis among the conditions to watch for at adult visits, but it does not set a scan schedule. The USPSTF recommends osteoporosis screening for women 65 and older and younger postmenopausal women at higher risk, and finds the evidence insufficient for men. (SBA preventive care, 2020) (USPSTF osteoporosis, 2025)

Why are skin checks part of care?

Many people with spina bifida have less feeling in the legs and around the bottom, so injuries may not be felt. The skin guideline says to inspect the skin every day, and the preventive care guideline asks about skin breakdown at adult visits. (NHS) (SBA skin, 2020) (SBA preventive care, 2020)