Evidence map›Paper›PMID 38362212›Full record

ArticleFrontiers in public health2024

The socioeconomic burden of spinal muscular atrophy in Saudi Arabia: a cross-sectional pilot study.

Khloud Mubark Alotaibi, Mohannad Alsuhaibani, Khalid S Al-Essa, Ahmed Khamis Bamaga, Amnah S Mukhtar, Ali Mohammed Alrumaih, Huda F Al-Hasinah, Shaikhah Aldossary, Fouad Alghamdi, Mohamad-Hani Temsah and 4 more

Open access · goldAbstract read
In one paragraph

Article in Frontiers in public health, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
0.9field-weighted citation impact, top 28% 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

4 citing papers in PubMed, 2 citations in OpenAlex.

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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

14 authors at 6 institutions in 1 country.

Khloud Mubark Alotaibi *Department of Clinical Pharmacy, College of Pharmacy, King Saud University, Riyadh, Saudi Arabia.
Mohannad AlsuhaibaniDepartment of Clinical Pharmacy, College of Pharmacy, King Saud University, Riyadh, Saudi Arabia.
Khalid S Al-EssaDepartment of Clinical Pharmacy, College of Pharmacy, King Saud University, Riyadh, Saudi Arabia.
Ahmed Khamis BamagaNeurology Division, Department of Pediatrics, Faculty of Medicine, King Abdulaziz University, Jeddah, Saudi Arabia.
Amnah S MukhtarPharmaceutical Care Department, King Faisal Specialist Hospital and Research Centre, Jeddah, Saudi Arabia.
Ali Mohammed AlrumaihPharmaceutical Care Department, General Directorate for Health Services, Riyadh, Saudi Arabia.
Huda F Al-HasinahDepartment of Pharmacy, Prince Sultan Medical City, Riyadh, Saudi Arabia.
Shaikhah AldossaryDepartment of Pediatric Neurology, King Fahad Specialist Hospital, Dammam, Saudi Arabia.
Fouad AlghamdiDepartment of Pediatric Neurology, King Fahad Specialist Hospital, Dammam, Saudi Arabia.
Mohamad-Hani TemsahDepartment of Pediatrics, College of Medicine, King Saud University, Riyadh, Saudi Arabia.
Norah AbanmyDepartment of Clinical Pharmacy, College of Pharmacy, King Saud University, Riyadh, Saudi Arabia.
Monira AlwhaibiDepartment of Clinical Pharmacy, College of Pharmacy, King Saud University, Riyadh, Saudi Arabia.
Yousif AsiriDepartment of Clinical Pharmacy, College of Pharmacy, King Saud University, Riyadh, Saudi Arabia.
Yazed AlRuthia *Department of Clinical Pharmacy, College of Pharmacy, King Saud University, Riyadh, Saudi Arabia.
King Saud University · SAKing Fahad Specialist Hospital · SAKing Abdulaziz University · SAKing Faisal Specialist Hospital & Research Centre · SAPrince Sultan University · SASaudi Commission for Health Specialties · SA

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: Spinal muscular atrophy (SMA) is a rare debilitating condition with a significant burden for patients and society. However, little is known about how it affects Saudi Arabia's population. The socioeconomic and medical characteristics of affected SMA patients and their caregivers are lacking. Purpose: This study aimed to describe the socioeconomic and medical characteristics of SMA patients and caregivers in Saudi Arabia. Patients and methods: A cross-sectional questionnaire-based study was conducted using snowball sampling. Assessment tools including EuroQol (EQ-5D-5L) and visual analog scale (EQ-VAS), Generalized Anxiety Disorder 7-item (GAD-7), Patient Health Questionnaire (PHQ-9), and Costs for Patients Questionnaire (CoPaQ) were used to assess the quality of life (QoL), anxiety, depression, and out-of-pocket expenditures. Results: Sixty-four caregivers of SMA patients participated. Type I patients had higher sibling concordance, ICU hospitalization, and mechanical support needs. Type III patients had better QoL. Type I patients' caregivers had higher depression scores. Type III patients' caregivers had higher out-of-pocket expenditures. Forty-eight percent received supportive care, while others received SMA approved therapies. Conclusion: SMA imposes a significant socioeconomic burden on patients and caregivers, requiring more attention from the healthcare system. Access to innovative therapies varied across SMA types. Pre-marital screening and early detection are crucial to reduce disease incidence and ensure timely treatment.

Indexed as

Muscular Atrophy, SpinalQuality of LifeCross-Sectional StudiesHumansPilot ProjectsSaudi ArabiaSocioeconomic Factorsaccess to treatmentsburden of diseaseout-of-pocket (OOP) expensesSaudi Arabiaspinal muscular atrophy

Identifiers

PMID38362212
PMCPMC10867838
OpenAlexW4391449059

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Registered trials

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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.