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

Khalil, Mujtaba; Bakhshi, Saqib Kamran; Shah, Zara; Urooj, Faiza; Golani, Shilpa; Musood, Hassaan; Zahid, Nida; Dewan, Michael Christopher; Shamim, Muhammad Shahzad

doi:10.1007/s00381-023-05993-2

Cited by 4 publications

(2 citation statements)

References 24 publications

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“…Also, other comorbidities such as epilepsy decreased the QOL, which reiterates how being affected by multiple conditions can be very challenging to the individual and negatively attenuates the QOL. Unlike other studies, we found that having Chiari II malformation did not make any statistical difference to the QOL, while hydrocephalus did [ 16 ]. A potential bias could have resulted from the sample size as only four patients (13%) had Chiari II malformation, compared to 18 children (58%) that had hydrocephalus and surgery.…”

Section: Discussioncontrasting

confidence: 99%

Assessing Health-Related Quality of Life in Children With Spina Bifida in Lithuania

Ali,

Bakanienė,

Dafalla

et al. 2024

Cureus

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Introduction In recent years, more emphasis has been placed on improving the health-related quality of life (HRQOL) in children with spina bifida (SB). Chronic disability is understood to impact various aspects of the person's life, family, and social functioning, in addition to the specific needs of the disease. The HRQOL is done to assess the patient's quality of life (QOL) in various domains including physical and mental. Back in the 1900s, few children survived SB, whereas today, they almost have normal life expectancy. By understanding the contributing factors to the quality of life (QOL), more targeted interventions can be put in place in order to maximize the psychological and social well-being of these patients. Aim The aim of this study is to estimate the health-related quality of life (HRQOL) in Lithuanian children with spina bifida (SB) in relation to comorbidities, level of lesions, and mobility. Objectives The objectives of this study are to investigate the HRQOL of Lithuanian children with SB born between 1999 and 2012; to analyze the relation between the HRQOL and its comorbidities, including hydrocephalus, Chiari II malformation, incontinence, and epilepsy; and to determine the relationship of health variables, the level of lesions, and mobility to the HRQOL. Methods This was a quantitative cross-sectional study on children with spina bifida across Lithuania to assess the HRQOL. Subjects were chosen and interviewed from various cities including Kaunas, Vilnius, Marijampolė, Gargždai, Biržai, Panevėžys, Palanga, and Alytus. A questionnaire was used as an instrument to measure the HRQOL. The level of lesions, comorbidities, and other health variables were obtained from the medical files and directly from the patient's history. Results Regarding the HRQOL, our study population showed the highest scores in the emotional, medical, intellectual, and social domains. The lowest sub-scores were in recreational, vocational, environmental, and then physical domains. We also found that certain comorbidities including hydrocephalus, epilepsy, and incontinence negatively affected the QOL. In our study group, we also found that the ambulatory group scored significantly higher in the overall QOL. However, when comparing the level of lesions to the HRQOL, we found no statistically significant difference. Conclusion Positive results were obtained regarding the medical, emotional, intellectual, and social aspects of patients with SB in Lithuania as they scored high in this domain. However, the environmental and vocational domains scored low, suggesting that further examination needs to be carried in these domains. We concluded that having various comorbidities including hydrocephalus and incontinence has negative impacts on the QOL. Patients who suffered from epilepsy had a statistically significant lower QOL. No significant difference was found in the association between the level of lesion...

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Section: Discussioncontrasting

confidence: 99%

Assessing Health-Related Quality of Life in Children With Spina Bifida in Lithuania

Ali,

Bakanienė,

Dafalla

et al. 2024

Cureus

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“…1 The long-term outcomes and quality of life for patients with NTDs are not wellcharacterized, but an estimated 75% of patients experience disability even after surgical treatment. 5 LMICs face not only higher incidences of NTDs and hydrocephalus but also a greater burden of care because of limited access to neurosurgical intervention among other socioeconomic and medical access challenges. 2 NTDs and hydrocephalus are preventable and treatable conditions with early intervention.…”

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confidence: 99%

Comparative Scoping Review of Prenatal Care Resources for Families of Children With Spinal Dysraphism and Hydrocephalus in High-Income Countries and Low- and Middle-Income Countries

Jiang,

Kalluri,

Ran

et al. 2023

Neurosurgery

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BACKGROUND AND OBJECTIVES: Low- and middle-income countries (LMICs) face higher incidences and burdens of care for neural tube defects (NTDs) and hydrocephalus compared with high-income countries (HICs), in part due to limited access to neurosurgical intervention. In this scoping review, we aim to integrate studies on prenatal care, counseling, and surgical management for families of children with spinal dysraphism and hydrocephalus in LMICs and HICs. METHODS: PubMed, Embase, Global Index Medicus, and Web of Science electronic databases were searched for English language articles pertaining to prenatal care, counseling, and surgical management for families of children with spinal dysraphism and hydrocephalus in HICs and LMICs. Identified abstracts were screened for full-text review. Studies meeting inclusion criteria were reviewed in full and analyzed. RESULTS: Seventy studies met the inclusion criteria. Twelve studies (16.9%) were conducted in HICs only, 50 studies (70.4%) were conducted in LMICs only, and 9 studies (12.7%) encompassed both. On thematic analysis, seven underlying topics were identified: epidemiology, folate deficiency and supplementation/fortification, risk factors other than folate deficiency, prenatal screening, attitudes and perceptions about NTDs and their care, surgical management, and recommendations for guideline implementation. CONCLUSION: NTDs have become a widely acknowledged public health problem in many LMICs. Prenatal counseling and care and folate fortification are critical in the prevention of spinal dysraphism. However, high-quality, standardized studies reporting their epidemiology, prevention, and management remain scarce. Compared with NTDs, research on the prevention and screening of hydrocephalus is even further limited. Future studies are necessary to quantify the burden of disease and identify strategies for improving global outcomes in treating and reducing the prevalence of NTDs and hydrocephalus. Surgical management of NTDs in LMICs is currently limited, but pediatric neurosurgeons may be uniquely equipped to address disparities in the care and counseling of families of children with spinal dysraphism and hydrocephalus.

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The Importance of Neurosurgical Intervention and Surgical Timing for Management of Pediatric Patients with Myelomeningoceles in Bangladesh

Mukherjee,

Papadakis,

Arman

et al. 2024

World Neurosurgery

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

Cited by 4 publications

References 24 publications

Assessing Health-Related Quality of Life in Children With Spina Bifida in Lithuania

Assessing Health-Related Quality of Life in Children With Spina Bifida in Lithuania

Comparative Scoping Review of Prenatal Care Resources for Families of Children With Spinal Dysraphism and Hydrocephalus in High-Income Countries and Low- and Middle-Income Countries

The Importance of Neurosurgical Intervention and Surgical Timing for Management of Pediatric Patients with Myelomeningoceles in Bangladesh

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