Evidence map›Paper›PMID 34070298›Full record

ReviewChildren (Basel, Switzerland)2021

Needs and Experiences of Children and Adolescents with Pediatric Multiple Sclerosis and Their Caregivers: A Systematic Review.

Shashank Ghai, Elisabeth Kasilingam, Roberta Lanzillo, Masa Malenica, Vincent van Pesch, Niamh Caitlin Burke, Antonio Carotenuto, Rebecca Maguire

Open access · goldAbstract readReview
In one paragraph

Review in Children (Basel, Switzerland), 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.

0numbers the graph read from it
0cells of the map it votes in
10citing papers in PubMed
1.4field-weighted citation impact, top 20% 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

10 citing papers in PubMed, 15 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

8 authors at 5 institutions in 4 countries.

Shashank GhaiSchool of Physical and Occupational Therapy, McGill University, Montréal, QC H3G 1Y5, Canada.ORCID 0000-0002-8779-7408
Elisabeth KasilingamEuropean Multiple Sclerosis Platform, 1030 Brussels, Belgium.
Roberta LanzilloDepartment of Neurosciences, Reproductive and Odontostomatological Sciences, Federico II University, 80138 Naples, Italy.ORCID 0000-0001-6388-8180
Masa MalenicaDepartment of Child Neurology, Associated Member of the ERN EpiCARE, Sestre Milosrdnice University Hospital Center, 10000 Zagreb, Croatia.ORCID 0000-0003-4950-9038
Vincent van PeschDepartment of Neurology, Cliniques Universitaires Saint-Luc, UCLouvain, 1200 Brussels, Belgium.ORCID 0000-0003-2885-9004
Niamh Caitlin BurkeDepartment of Psychology, Maynooth University, Maynooth W23 F2K8, Ireland.
Antonio CarotenutoDepartment of Neurosciences, Reproductive and Odontostomatological Sciences, Federico II University, 80138 Naples, Italy.ORCID 0000-0002-1574-9693
Rebecca MaguireDepartment of Psychology, Maynooth University, Maynooth W23 F2K8, Ireland.ORCID 0000-0002-0368-4626
Federico II University Hospital · ITNational University of Ireland, Maynooth · IECliniques Universitaires Saint-Luc · BEEuropean Platform of Women Scientists · BEJewish Rehabilitation Hospital · CA

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

In the present study we conduct a systematic review to evaluate the needs and experience of people with pediatric multiple sclerosis (MS) and their caregivers. The literature search was conducted across 10 academic databases, adhering to PRISMA-P guidelines. Quality appraisal was conducted using the mixed method appraisal test for individual studies, and GRADE-CERQual to establish overall confidence of findings. Results were analyzed using a process of narrative synthesis. We identified 26 studies which included 2253 children/adolescents with MS (CAMS) and 1608 caregivers. MS was reported to negatively impact experiences for CAMS in domains such as of school performance, social relationships, mental health, and overall physical functioning. Specifically, fatigue and social support were reported as the most important barriers and facilitators for CAMS, respectively. In terms of caregiver experience, negative impacts were reported on social functioning, mental health, and quality of life. Additionally, lack of awareness concerning MS was one of the biggest challenges reported. Caregivers expressed needs for psychological and social support. This study provides the first evidence regarding the needs and experiences of CAMS and their caregivers. Findings can be used to address policy gaps for supporting families affected by pediatric MS.

Indexed as

burdencaregiverspediatric multiple sclerosisquality of lifesocial support

Identifiers

PMID34070298
PMCPMC8226634
OpenAlexW3165577447

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.