Ambulation, lesion level, and health-related quality of life in children with myelomeningocele

Abanoz, Ebru Şeker; Özmen, Meral; Çalışkan, Mine; Gökçay, Gülbin; Aydınli̇, Nur

doi:10.1007/s00381-019-04348-0

Cited by 6 publications

(19 citation statements)

References 18 publications

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“…Meningomyelocele is one of the most common congenital malformations (Adzick, 2010;Copp et al, 2015;Şeker Abanoz et al, 2020).…”

Section: Discussionmentioning

confidence: 99%

“…Meningomyelocele is one of the most common congenital malformations (Adzick, 2010; Copp et al, 2015; Şeker Abanoz et al, 2020). The family is the most immediate environment for the child's growth and socialisation (Ljubičić et al, 2022), and the sibling relationship is the longest in human life (Relva et al, 2019).…”

Section: Discussionmentioning

confidence: 99%

“…Meningomyelocele occurs in about 1/1000 births worldwide, being one of the most common congenital malformations. Exposed neural tissue degenerates in utero, resulting in motor and sensory neurologic deficits, neurogenic bladder and bowels, hydrocephalus, Chiari II malformation and orthopaedic abnormalities (Adzick, 2010; Copp et al, 2015; Şeker Abanoz et al, 2020). Both functional impairments and clinical comorbidities require continuous care.…”

Section: Introductionmentioning

confidence: 99%

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Quality of life of families and siblings of children and adolescents with meningomyelocele

Dias,

de Rodrigues,

Duarte

2024

Child

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BackgroundChildren with meningomyelocele may require continuous care. Consequently, there is a risk for caregiver burden and impact on family quality of life (QoL), including siblings' QoL. Some studies analysed caregivers' burden and family QoL separately. However, none of these studies evaluated siblings' QoL and the associations between these three dimensions. This study investigated the associations between caregivers' burden, family QoL and siblings' QoL in Brazilian families of children with meningomyelocele and its correlations with sociodemographic, functional and clinical variables. Siblings' QoL was specifically assessed using as a parameter the QoL of typically developed Brazilian children.MethodsOne hundred and fifty families, 150 caregivers and 68 siblings completed the Family Quality of Life Scale, Burden Interview, KIDSCREEN‐27 Child and Adolescent Version and Parents Version questionnaires.ResultsMost families and caregivers reported a high family QoL and a low caregiver burden. Family QoL was significantly lower as caregivers' burden increased. Caregiver's burden was significantly lower with increasing family QoL levels. Self‐reported siblings' QoL was significantly worse than that of typically developed peers. There were no significant differences between self and parent‐reported siblings' QoL. Self‐reported siblings' QoL was significantly worse as their age increased and better with increasing family QoL levels. Parent‐reported siblings' QoL was significantly worse with increasing levels of caregiver's burden and significantly better as family QoL increased. There were no significant associations with functional and clinical variables.ConclusionsDespite the cross‐sectional nature of the available data precludes any statements of causality, our results reinforce the relevance of knowing the factors that influence the QoL of families and siblings of children and adolescents with meningomyelocele and the relevance of actions aimed at reducing caregivers' burden, improving family QoL and meeting siblings' individual needs. Future multicenter studies may validate the generalizability of our findings.

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“…Meningomyelocele is one of the most common congenital malformations (Adzick, 2010;Copp et al, 2015;Şeker Abanoz et al, 2020).…”

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Quality of life of families and siblings of children and adolescents with meningomyelocele

Dias,

de Rodrigues,

Duarte

2024

Child

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“…Por isso, estudos que abrangem tratamento multidisciplinar são relevantes 8 , ao mostrarem o aumento do bem-estar psicossocial e a importância dos estudos sobre qualidade de vida. No entanto, há ainda uma limitação e divergência em estudos que avaliam a qualidade de vida de acordo com os níveis da lesão de pacientes com espinha bífida.…”

Section: Introductionunclassified

“…No entanto, há ainda uma limitação e divergência em estudos que avaliam a qualidade de vida de acordo com os níveis da lesão de pacientes com espinha bífida. Além disso, determinar um instrumento para quantificar a qualidade de vida é essencial tanto para os profissionais que atuam nesta área, quanto a população no geral, à medida que pode indicar as limitações motoras, sensitivas e os diversos distúrbios de saúde associados que podem comprometer a qualidade de vida relacionada à saúde 8 .…”

Section: Introductionunclassified

Fatores associados à qualidade de vida de pessoas com Espinha Bífida

Lucio,

Sambe,

Valenciano

et al. 2023

Rev Neurocienc

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Introdução. Espinha bífida é um distúrbio neurológico caracterizado pelo desenvolvimento incompleto do tubo neural, sendo a mielomeningocele seu tipo mais comum e grave, no qual possui fatores que impactam em seu estado de saúde, e consequentemente na qualidade de vida. Objetivo. Verificar e reunir fatores que impactam na qualidade de vida de indivíduos com espinha bífida e os principais instrumentos de avaliação utilizados. Método. Trata-se de uma revisão de literatura, com buscas bibliográficas nas bases Science Direct, Lilacs, Pubmed, Cochrane e Scielo, no período de janeiro de 2022 e atualizada em dezembro de 2022. Resultados. Foram incluídos 12 estudos realizados entre 2005 a 2019. O instrumento de avaliação Child Health Questionnaire foi encontrado como o questionário mais utilizado entre os artigos. E os desfechos encontrados que mais impactam na qualidade de vida de indivíduos com espinha bífida foi a incontinência intestinal e urinária. Conclusão. Espinha bífida é uma condição complexa que leva a comprometimento de diferentes componentes do corpo, podendo levar a limitações em atividades e restrições na participação. A presença de incontinência urinária e fecal são os fatores que mostraram impactar de forma negativa a qualidade de vida nessa população, havendo necessidade de maior atenção em ações de educação e manejo. Além disso, definir um instrumento de avaliação e identificar os desfechos em saúde que impactam é essencial para o trabalho multidisciplinar e o tratamento.

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Quality of life in children operated for spina bifida; low- and middle-income country perspective

Khalil,

Bakhshi,

Shah

et al. 2023

Childs Nerv Syst

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Ambulation, lesion level, and health-related quality of life in children with myelomeningocele

Cited by 6 publications

References 18 publications

Quality of life of families and siblings of children and adolescents with meningomyelocele

Quality of life of families and siblings of children and adolescents with meningomyelocele

Fatores associados à qualidade de vida de pessoas com Espinha Bífida

Quality of life in children operated for spina bifida; low- and middle-income country perspective

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