Factors Associated with Quality of Life in Adolescents with Spina Bifida

Sawin, Kathleen J.; Brei, Timothy J.; Buran, Constance F.; Fastenau, Philip S.

doi:10.1177/089801010202000307

Cited by 77 publications

(119 citation statements)

References 39 publications

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“…Similar to other cohorts, many participants (almost 50%) in this study were dependent on their carers for management and support [34]. The positive effects on various aspects of bladder/bowel and cognitive/behaviour function in this study are also reported in different SB subgroups and settings [3,4,13,14,35,36]. The improvements in bladder/bowel dysfunction, cognitive and other outcomes (QoL, coping strategies) were independent of study participants' demographic and clinical characteristics, which suggest the need to further engage pwSB in rehabilitation activities.…”

Section: Discussionsupporting

confidence: 52%

Effectiveness of the Interdisciplinary Ambulatory Rehabilitation Program in Persons with Spina Bifida

Khan¹,

Amatya²

2015

PHCOA

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Section: Discussionsupporting

confidence: 52%

Effectiveness of the Interdisciplinary Ambulatory Rehabilitation Program in Persons with Spina Bifida

Khan¹,

Amatya²

2015

PHCOA

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“…However, self-esteem was lower in the group of persons with myelomeningocoele. Sawin et al 16 found a moderately high QoL in families with adolescents with SB. In addition, they found no relationship between QoL and shunt status, level of lesion, and severity of the SB.…”

Section: Discussionmentioning

confidence: 99%

“…Some authors 15 found that the healthrelated QoL of their study population was below normal, whereas others concluded that QoL was good 10 and comparable to that of persons without SB. 11,16 QoL is a notion with a rather broad meaning, but it is usually associated with well-being or life satisfaction. 17 Defining life satisfaction as an element of QoL, rather than equating it to QoL, is an effective approach.…”

mentioning

confidence: 99%

Life satisfaction of young adults with spina bifida

Barf

Post

Verhoef

et al. 2007

Develop Med Child Neuro

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This study concerns life satisfaction and its determinants in Dutch young adults with spina bifida (SB). Data on life satisfaction (Life Satisfaction Questionnaire ) were related to hydrocephalus, lesion level, disabilities, and demographic variables. In total, 179 young adults with SB participated (41% male, age range 16-25y; 79% SB aperta, 67% hydrocephalus [HC], 39% wheelchair-dependent). Most were satisfied with their life as a whole (24% dissatisfied). No difference was found from a population reference group (28% dissatisfied). Highest proportions of dissatisfaction were found for financial situation (44%), partnership relations (49%), and sex life (55%). Least dissatisfaction was found for contact with friends (17%) and families (15%). Young adults with SB and HC were more satisfied with their financial situation and family life but were less satisfied with self-care ability and partnership relations than those without HC and the reference group. However, except for self-care ability, relationships between life satisfaction and having SB were weak. In conclusion, self-care ability and partnership relations were rated least favourable and may need more attention from care providers. Overall, SB does not seem to be an important determinant of life satisfaction.Spina bifida (SB) is a congenital condition that may result in a wide variety of physical and cognitive limitations. 1-7 After the initial hazardous years, the survival rate for a person with SB is near normal, 8,9 although hydrocephalus (HC), bladder management, and kidney-sparing always remain an issue. 7,9 Several authors have proposed that chronic conditions such as SB confront youngsters with additional barriers in the transition from adolescence to adulthood compared with their typically developing peers. 10-12 They may find themselves, for example, disadvantaged with regard to career opportunities or finding a partner. Better insight into the quality of life (QoL) of young adults with SB might identify support needs and might, thereby, provide a basis for improving the support system. Knowledge of the QoL of persons with SB is also relevant with regard to today's policies of aborting pregnancies early in gestation, the use of new operation techniques such as in utero closure of the neural tube, 13 and deciding whether or not to treat early after birth. Such decisions by medical professionals are based on, among other considerations, the expected long-term QoL of the patients involved. However, professionals tend to rate the QoL of their patients much lower than the patients themselves do. 14 Only limited research into the QoL of persons born with SB is available, and the results are equivocal. Some authors 15 found that the healthrelated QoL of their study population was below normal, whereas others concluded that QoL was good 10 and comparable to that of persons without SB. 11,16 QoL is a notion with a rather broad meaning, but it is usually associated with well-being or life satisfaction. 17 Defining life satisfaction as an element of QoL, ra...

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“…20,21 However, Ramachandra et al recently studied a cohort of 74 patients with myelomeningocele using the PedsQL 4.0 scale and found history of VP shunt to be associated with a significantly lower patient-reported physical health summary score.…”

Section: Shunts and Cm-ii In Myelomeningocele Patientsmentioning

confidence: 99%

“…18 HRQOL focuses on how each patient assesses the influence of a chronic health issue on his/her physical and psychosocial functioning. 17,21 The goal of the present study was to characterize the quality of life (QOL) of pediatric patients with spina bifida who were seen at a multidisciplinary, comprehensive outpatient clinic within a large medical center. In addition to serving as a vital part of the ongoing assessment of spina bifida care at Children's of Alabama (COA), these results will allow analysis of factors that influence HRQOL and will aid in the determination of whether a correlation exists between various disease and/or personal characteristics and HRQOL scores.…”

mentioning

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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Factors Associated with Quality of Life in Adolescents with Spina Bifida

Cited by 77 publications

References 39 publications

Effectiveness of the Interdisciplinary Ambulatory Rehabilitation Program in Persons with Spina Bifida

Effectiveness of the Interdisciplinary Ambulatory Rehabilitation Program in Persons with Spina Bifida

Life satisfaction of young adults with spina bifida

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

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