Psychosocial Outcomes of Children and Adolescents With Early-Onset Spinal Cord Injury and Those With Spina Bifida

Flanagan, Ann; Kelly, Erin H.

doi:10.1097/pep.0b013e3182a5d35c

Cited by 13 publications

(30 citation statements)

References 26 publications

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“…In studies with children and their caregivers, some researchers have noted that poor HRQOL is clinically related to lesion level, age, ambulatory ability, family function, and rehabilitation treatment team integration. 9,12,14,18,20,22,23,25 Meanwhile, other studies have noted that HRQOL in spina bifida patients is unrelated to age, functional ability, lesion level, sex, obesity, or sexual function. 1,8,13,14,15,20 Our investigation of several variables that were applicable to the entire clinic population found none that correlated with HRQOL score.…”

Section: Effect Of Demographic Variablesmentioning

confidence: 99%

Assessing health-related quality of life in children with spina bifida

Rocque

Bishop

Scogin

et al. 2015

PED

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OBJECT The purpose of this study is to explore various aspects of health-related quality of life (HRQOL) in children with spinal dysraphism. METHODS The authors enrolled a prospective cohort of 159 patients from the multidisciplinary spina bifida clinic. Surveys were distributed to caregivers of patients with spina bifida who were 5 years old and older. Data were collected using the Health Utilities Index Mark 3 focusing on vision, speech, hearing, dexterity, ambulation, cognition, emotions, and pain. Each participant received an overall HRQOL utility score and individual domain subscores. These were correlated with demographic and treatment variables. Analysis was done using SPSS statistics (version 21). RESULTS There were 125 patients with myelomeningocele, 25 with lipomyelomeningocele, and 9 with other dysraphisms. Among patients with myelomeningocele, 107 (86%) had CSF shunts in place, 14 (11%) had undergone Chiari malformation Type II decompression, 59 (47%) were community ambulators, and 45 (36%) were nonambulatory. Patients with myelomeningocele had significantly lower overall HRQOL scores than patients with closed spinal dysraphism. Among patients with myelomeningocele, younger patients had higher HRQOL scores. Patients with impaired bowel continence had lower overall HRQOL scores. History of a ventriculoperitoneal shunt was associated with worse HRQOL (overall score, ambulation, and cognition subscores). History of Chiari malformation Type II decompression was associated with worse overall, speech, and cognition scores. Patients who could ambulate in the community had higher overall and ambulation scores. A history of tethered cord release was correlated with lower pain subscore. No association was found between sex, race, insurance type, or bladder continence and HRQOL. CONCLUSIONS Patients with myelomeningocele have significantly lower HRQOL scores than those with other spinal dysraphisms. History of shunt treatment and Chiari decompression correlate with lower HRQOL scores.

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Section: Effect Of Demographic Variablesmentioning

confidence: 99%

Assessing health-related quality of life in children with spina bifida

Rocque

Bishop

Scogin

et al. 2015

PED

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“…The results of this study showed that children with SB participated a lot in school activities, mostly in structured activities. However, involvement in those activities was quite low especially in the setting of recess/playground [19]. Another study by Connor-Kuntz et al (1995) investigated the frequency of participation (i.e., attendance) in physical education.…”

Section: Resultsmentioning

confidence: 99%

“…One study did not reveal any relationship between community participation and level of lesion and walking abilities [20]. In contrast, the data from other study showed that motor skills were the most significant determinant of the engagement in the classroom and mealtime/snack time activities [19]. Moreover, Connor-Kuntz et al (1995) determined a contrasting association whereby children with independence in ambulation reported lower sports participation.…”

Section: Resultsmentioning

confidence: 99%

“…Issues with communication and learning disability had adverse effects on community participation in the study of Liptak et al (2010) [21]. Peny-Dahlstrand et al (2013) indicated that processing skills were the important contributory factor in the setting of a classroom, mealtime/snacks, and playground/recess [19]. …”

Section: Resultsmentioning

confidence: 99%

“…However, those findings are not specific to children with SB; the participation of children with all types of chronic diseases is greatly influenced by environmental barriers [15,19]. …”

Section: Discussionmentioning

confidence: 99%

See 2 more Smart Citations

Participation of Children with Spina Bifida: A Scoping Review Using the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) as a Reference Framework

et al. 2018

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Background and objectives. Participation is a fundamental right of the child, regardless of his health status. Assessing and supporting the participation of children with spina bifida (SB) presents a significant challenge for practitioners. The purpose of this study was to examine what is known about the participation of children with SB. Materials and Methods. The framework for scoping reviews from Arksey & O’Malley was used. A literature search in Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medical Literature Analysis and Retrieval System Online (Medline), PsychINFO and the Education Resources Information Centre (ERIC) databases retrieved 136 papers, 10 of which met the criteria for inclusion and were selected for analysis. Synthesis of the results on participation within occupational domains of leisure, school and community, and factors influencing participation of children with SB was performed. Results. All the included studies were non-experimental and used cross-sectional, population-based or qualitative design. Most studies analysed social participation or participation in physical activities, except one that focused on school participation. Data from these studies have shown that children with SB experience greater participation restrictions compared to their typical peers or children with other chronic diseases. The participation was mainly affected by contextual factors. Relationships between pathology and participation were not sufficiently validated. Conclusions. There is little research on the participation of children with SB. Future studies must consider contextual factors and interventions facilitating or impeding participation.

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Anxiety and Depression in Pediatric-Onset Traumatic Spinal Cord Injury: A Systematic Review

Mofatteh,

Mashayekhi,

Arfaie

et al. 2024

World Neurosurgery

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Psychosocial Outcomes of Children and Adolescents With Early-Onset Spinal Cord Injury and Those With Spina Bifida

Abstract: Children and adolescents with SCI with paraplegia have greater school and overall QOL and participate in more activities than children and adolescents with SB. Children and adolescents with SB would benefit from increased support at school and in social participation.

Cited by 13 publications

References 26 publications

Assessing health-related quality of life in children with spina bifida

Assessing health-related quality of life in children with spina bifida

Participation of Children with Spina Bifida: A Scoping Review Using the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) as a Reference Framework

Anxiety and Depression in Pediatric-Onset Traumatic Spinal Cord Injury: A Systematic Review

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