Evidence map›Paper›PMID 35264367›Full record

ArticleBMJ open2022

Enablers and barriers to newborn screening for sickle cell disease in Africa: results from a qualitative study involving programmes in six countries.

Natasha M Archer, Baba Inusa, Julie Makani, Siana Nkya, Léon Tshilolo, Venee N Tubman, Patrick T McGann, Emmanuela Eusebio Ambrose, Natalie Henrich, Jonathan Spector and 1 more

Open access · goldAbstract read
In one paragraph

Article in BMJ open, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 30 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
30citing papers in PubMed, 2 pooled it
4.0field-weighted citation impact, top 5% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

30 citing papers in PubMed, 2 syntheses or guidelines pooled it, 34 citations in OpenAlex.

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  20. Newborn screening initiatives for sickle cell disease in Africa.Hematology. American Society of Hematology. Education Program · 2024
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors at 7 institutions in 3 countries.

Natasha M ArcherDivision of Hematology/Oncology, Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Boston, Massachusetts, USA natasha.archer@childrens.harvard.edu.ORCID 0000-0002-6460-5872
Baba InusaEvelina London Children's Hospital, London, UK.
Julie MakaniMuhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania.
Siana NkyaMuhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania.
Léon TshiloloInstitut de Recherche Biomédicale/CEFA and Centre Hospitalier Mère-Enfant Monkole, Kinshasa, Congo.
Venee N TubmanTexas Children's Cancer and Hematology Centers, Houston, Texas, USA.
Patrick T McGannDivision of Hematology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.ORCID 0000-0001-6198-4785
Emmanuela Eusebio AmbroseDepartment of Paediatrics and Child Health, Bugando Medical Centre, Mwanza, Tanzania.
Natalie HenrichAriadne Labs, Harvard T.H. Chan School of Public Health, Boston, Massachusetts, USA.
Jonathan SpectorDepartment of Global Health, Novartis Institutes for Biomedical Research, Cambridge, Massachusetts, USA.
Kwaku Ohene-FrempongSickle Cell Foundation of Ghana, Accra, Ghana.
Muhimbili University of Health and Allied Sciences · TZAriadne Diagnostics (United States) · USBugando Medical Centre · TZChildren's Cancer Center · USCincinnati Children's Hospital Medical Center · USDana-Farber/Boston Children's Cancer and Blood Disorders Center · USEvelina London Children's Healthcare · GB

Funding

Red blood cell modifiers for Plasmodium falciparum growth in sickle cell disease erythrocytesK08DK123386 · NIDDK · BOSTON CHILDREN'S HOSPITAL · PI ARCHER, NATASHA MARIE BERNADETTE · 2020 to 2024
$841k
Characterization of B Lymphocyte Deficiency in Pediatric Sickle Cell DiseaseK23HL148548 · NHLBI · BAYLOR COLLEGE OF MEDICINE · PI TUBMAN, VENEE N · 2020 to 2024
$816k
NHLBI NIH HHS K23 HL148548NIDDK NIH HHS K08 DK123386
6 · The paper itself

Abstract

objectivesGiven the fundamental role of newborn bloodspot screening (NBS) to enable prompt diagnosis and optimal clinical management of individuals with sickle cell disease (SCD), we sought to systematically assess enablers and barriers to implementation of NBS programmes for SCD in Africa using established qualitative research methods.

settingChildbirth centres and NBS laboratories from six countries in East, West and Southern Africa.

participantsEight programme leaders involved with establishing and operating NBS programmes for SCD in Angola, Democratic Republic of Congo, Ghana, Liberia, Nigeria and Tanzania. PRIMARY AND SECONDARY OUTCOME MEASURES: Data obtained through a structured, phased interview approach were analysed using a combination of inductive and deductive codes and used to determine primary themes related to the implementation and sustainability of SCD NBS programmes.

resultsFour primary themes emerged from the analysis relating to governance (eg, pragmatic considerations when deploying overcommitted clinical staff to perform NBS), technical (eg, design and execution of operational processes), cultural (eg, variability of knowledge and perceptions of community-based staff) and financial (eg, issues that can arise when external funding may effectively preclude government inputs) aspects. Key learnings included perceived factors that contribute to long-term NBS programme sustainability.

conclusionsThe establishment of enduring NBS programmes is a proven approach to improving the health of populations with SCD. Organising such programmes in Africa is feasible, but initial implementation does not assure sustainability. Our analysis suggests that future programmes should prioritise government partner participation and funding from the earliest stages of programme development.

Indexed as

Anemia, Sickle CellNeonatal ScreeningHumansInfant, NewbornNigeriaProgram EvaluationQualitative Researchanaemianeonatologypaediatrics

Identifiers

PMID35264367
PMCPMC8915265
OpenAlexW4220949608

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.