Children with spina bifida in Eastern Uganda report a reasonable quality of life relative to their healthy school-attending peers

Sims‐Williams, Helen; Sims-Williams, Hugh P; Kabachelor, Edith Mbabazi; Magombe, Joshua; Warf, Benjamin C.

doi:10.1136/archdischild-2018-315044

Cited by 1 publication

(1 citation statement)

References 3 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Papers focusing on disability generally investigated how living with untreated CA affected physical/functional capacity (e.g., [ 63 , 103 , 109 , 134 ]), with some reporting on associated comorbidities (e.g., [ 64 , 75 ]). One paper [ 134 ] evaluated self-reported quality of life of children living with spina bifida compared to unaffected children. A few papers investigated the impact on the quality of life for mothers (e.g., [ 30 , 195 , 256 ]) and caregivers of affected children (e.g., [ 25 , 31 ]).…”

Section: Resultsmentioning

confidence: 99%

The burden, prevention and care of infants and children with congenital anomalies in sub-Saharan Africa: A scoping review

Leke,

Malherbe,

Kalk

et al. 2023

PLOS Glob Public Health

View full text Add to dashboard Cite

The aim of this scoping review was to determine the scope, objectives and methodology of contemporary published research on congenital anomalies (CAs) in sub-Saharan Africa (SSA), to inform activities of the newly established sub-Saharan African Congenital Anomaly Network (sSCAN). MEDLINE was searched for CA-related articles published between January 2016 and June 2021. Articles were classified into four main areas (public health burden, surveillance, prevention, care) and their objectives and methodologies summarized. Of the 532 articles identified, 255 were included. The articles originated from 22 of the 49 SSA countries, with four countries contributing 60% of the articles: Nigeria (22.0%), Ethiopia (14.1%), Uganda (11.7%) and South Africa (11.7%). Only 5.5% of studies involved multiple countries within the region. Most articles included CA as their primary focus (85%), investigated a single CA (88%), focused on CA burden (56.9%) and care (54.1%), with less coverage of surveillance (3.5%) and prevention (13.3%). The most common study designs were case studies/case series (26.6%), followed by cross-sectional surveys (17.6%), retrospective record reviews (17.3%), and cohort studies (17.2%). Studies were mainly derived from single hospitals (60.4%), with only 9% being population-based studies. Most data were obtained from retrospective review of clinical records (56.1%) or via caregiver interviews (34.9%). Few papers included stillbirths (7.5%), prenatally diagnosed CAs (3.5%) or terminations of pregnancy for CA (2.4%).This first-of-a-kind-scoping review on CA in SSA demonstrated an increasing level of awareness and recognition among researchers in SSA of the contribution of CAs to under-5 mortality and morbidity in the region. The review also highlighted the need to address diagnosis, prevention, surveillance and care to meet Sustainable Development Goals 3.2 and 3.8. The SSA sub-region faces unique challenges, including fragmentation of efforts that we hope to surmount through sSCAN via a multidisciplinary and multi-stakeholder approach.

show abstract