PTOTCohortJournal of developmental and behavioral pediatrics : JDBP2023

Age-Specific Probability of 4 Major Health Outcomes in Children with Spina Bifida.

Kendra E Gilbertson, Tiebin Liu, John S Wiener and 8 others

PMID 37816172

WHAT IT FOUND

Continence improves with age, but mobility and skin integrity worsen.

For children with spina bifida, expect bladder and bowel incontinence to decrease from ages 5 to 19, while the risk of pressure sores and loss of walking ability increases steadily. These trends hold regardless of sex or race.

Key findings

01The probability of bladder and bowel incontinence decreases linearly with age, while the probability of skin breakdown and lack of ambulation increases linearly with age.

02Individuals with myelomeningocele (MMC) have significantly higher rates of incontinence, skin breakdown, and lack of ambulation compared to those with non-myelomeningocele types (NMMC).

03The study provides age-specific probability charts for clinicians to compare their clinic's patient outcomes against national registry data, but these charts do not predict outcomes for individual patients.

STILL TO COME

How it was doneWhat they foundWhat it means for PTsWhat it means for OTs

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What it does not show

The study is cross-sectional, meaning it looked at data from the most recent visit for each person rather than following them over time. Changes between visits were not captured. Data on continence and skin breakdown relied on self-report or proxy report (parents/caregivers), which introduces potential recall bias. The definitions for incontinence changed during the study period (from 'dry during day' to 'incontinence once per month or more'), which may affect the consistency of the data. The analysis did not include adults (20+ years), so the trends cannot be extrapolated to the adult population. The study did not adjust for the level of lesion in the probability charts, acknowledging that lesion level is a strong predictor of ambulation. Participants were recruited from specialized multidisciplinary clinics, so results may not apply to individuals receiving care in other settings.

Declared interests

The authors declare no conflict of interest. The registry is funded by the Centers for Disease Control and Prevention (CDC).

The easy way to misread this

Do not use these charts to predict outcomes for an individual patient. The authors explicitly state that the charts provide average probabilities for age groups to help clinics compare their population data to national norms, but they do not provide outcome probabilities for individual patients.

Read it on PubMed →