Les maladies rares et leurs manifestations cliniques orales dans deux formations hospitalières de Yaoundé

Awa, Hubert Désiré Mbassi; Mvondo, Rose Mbédé Nga; Nguefack, Séraphin; Messanga, Charles Bengondo; Ndombo, Paul Olivier Koki

doi:10.11604/pamj.2019.32.195.14684

Cited by 3 publications

(2 citation statements)

References 28 publications

(30 reference statements)

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“…The present study has enrolled 65 patients with a rare disease. Our sample size is quite large compared to previous studies such as the study of Hubert Désiré Mbassi Awa et al [13], which analyzed 37 patients with rare diseases. This final sample size was achieved because the recruitment was conducted in two departments potentially frequented by patients with rare diseases.…”

Section: Discussionmentioning

confidence: 99%

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Epidemiological Aspects of Dental Anomalies in Moroccan Patients with Rare Diseases.

Oumensour

2022

MADOHC

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Section: Discussionmentioning

confidence: 99%

“…Majority of studies are descriptive. For example, the study conducted by Hubert Désoré Mbassi Awa et al [13] , was interested in all oral manifestations including dental anomalies. This study reported a high prevalence of 97.2%.…”

Section: Discussionmentioning

confidence: 99%

Epidemiological Aspects of Dental Anomalies in Moroccan Patients with Rare Diseases.

Oumensour

2022

MADOHC

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Parents as informal caregivers of children and adolescents with spinal muscular atrophy: a systematic review of quantitative and qualitative data on the psychosocial situation, caregiver burden, and family needs

Brandt

Johannsen

Inhestern

et al. 2022

Orphanet J Rare Dis

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Background Spinal muscular atrophy (SMA) is a rare degenerative neuromuscular disease, mostly occurring in infants and children, leading to muscle wasting and weakness, and premature death. Due to new developments of multiple disease-modifying treatments within the last years, the interest of research in patients affected by SMA increased steadily. However, the psychosocial situation of parents as informal caregivers is still rarely addressed. Objectives This review aims to highlight quantitative and qualitative data about the psychosocial situation, caregiver burden, and needs of parents as informal caregivers for children and adolescents with SMA. Methods A systematic literature review was performed including quantitative and qualitative original studies focusing on different psychosocial aspects and outcomes for parents of children and adolescents < 21 years of age with SMA type I–IV (PROSPERO; registration number CRD42020219020). We searched the following databases in November 2020 with a research update in August 2021: MEDLINE, CINAHL, PsycINFO and Web of Science. Results In total, 24 articles from 23 studies were selected for inclusion (15 quantitative studies, 7 articles from 6 qualitative studies, 2 mixed methods studies). The synthesis of included studies shows multiple sources of psychosocial burden for parents of children and adolescents affected by SMA: Most studies found reduced levels of quality of life, moderate to high levels of caregiver burden and distress, as well as physical and mental health symptoms. Further, findings indicate several unmet family needs regarding information, care coordination, treatment decisions, financial support, and adequate supportive care services. Conclusion Parents of children and adolescents with SMA face multiple sources of psychosocial stressors, caregiver burden and various unmet family needs. To unburden families, the needs of parents as caregivers should be included in integrated care paths for SMA to improve their psychosocial situation and thus their ability to care for their children and to treat or prevent physical and mental health problems due to overburdening. Future research should focus not only on quality of life and on caregiving-related burden but should also examine the clinical relevance of reported symptoms to support the implementation of adequate support services for families affected by SMA.

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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

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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.

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Les maladies rares et leurs manifestations cliniques orales dans deux formations hospitalières de Yaoundé

Cited by 3 publications

References 28 publications

Epidemiological Aspects of Dental Anomalies in Moroccan Patients with Rare Diseases.

Epidemiological Aspects of Dental Anomalies in Moroccan Patients with Rare Diseases.

Parents as informal caregivers of children and adolescents with spinal muscular atrophy: a systematic review of quantitative and qualitative data on the psychosocial situation, caregiver burden, and family needs

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

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