Abstract
PURPOSE:To investigate the: (1) percent of children with spina bifida (SB) complaining of pain, (2) frequency, duration, and cause of pain by sex, level of lesion type of SB, and ambulation status, (3) body sites reported to hurt, by variables in objective 2, and (4) associations between physical and mental/emotional health between caregiver and child.METHODS:Cross-sectional study of 101 caregivers of children (3 to 6 years old) with SB. Survey data and information from medical records were included. Pearson chi-square, one-way ANOVA, Fisher’s exact test, logistic regressions, and bivariate correlations were used.RESULTS:Seventy percent reported that their child complained of pain, which did not significantly differ by sex, level of lesion, type of SB, or ambulation status. Most (86%) were reported to have experienced pain for less than 24 hours. The most frequently reported pain site was the head, followed by the abdomen and the lower body. Number of pain sites was moderately correlated with frequency of pain complaints. Correlations between how caregivers reported their own physical/mental/emotional health and how they rated that of their children ranged from weak (r = 0.22) to moderate (r = 0.55).CONCLUSION:Almost seven of ten children reportedly complained of pain ranging from at least once a month to everyday. Pain needs to be routinely assessed and treated in this population.
Highlights
Spina bifida (SB) is a neural tube defect (NTD) manifesting as a complex condition associated with urological, neurological, and musculoskeletal complications [1]
The purpose of this report was to assess the proxyreported presence, frequency, duration, and body sites affected by pain in young children with spina bifida (SB), and how these differed by a number of non-modifiable factors
Percentages may not add up to 100% because of rounding. ∗“How long has “X” experienced pain?”(Pain duration data includes only those responding more than never to frequency of pain complaints); †Non-myelomeningocele (Non-MMC) are meningocele or lipomyelomeningocele, ††Ambulation was based on Hoffer
Summary
Spina bifida (SB) is a neural tube defect (NTD) manifesting as a complex condition associated with urological, neurological, and musculoskeletal complications [1]. The estimated prevalence in the United States is 2–3 per 10,000 live births [2, 3]. SB encompasses a variety of open/closed spinal NTDs, including myelomeningocele (MMC), myeloschisis, hemimyelomeningocele, meningocele, and lipomatous malformations [4]. MMC is the most frequent and the most involved type [5]. Comorbidities and secondary conditions are frequently associated with SB and can have a substantial negative effect on quality of life (QoL) and participation in school, work life, and recreational activities [6,7,8]. Whereas comorbidities occur irrespective of the underlying
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