Evidence map›Paper›PMID 36711221›Full record

ArticleInternational journal of MS care

Addressing Health-Related Quality of Life Among Children With Multiple Sclerosis.

Julia O'Mahony, Ruth Ann Marrie, Audrey Laporte, Adalsteinn Brown

Abstract read
In one paragraph

Article in International journal of MS care. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
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0citing papers in PubMed
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1 · What the graph read from it

What it found

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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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

4 authors.

Julia O'MahonyDepartment of Internal Medicine (JO'M), University of Manitoba, Winnipeg, MB, Canada.ORCID https://orcid.org/0000-0001-8338-1133
Ruth Ann MarrieDepartments of Medicine and Community Health Sciences, Max Rady College of Medicine, Rady Faculty of Health Sciences (RAM), University of Manitoba, Winnipeg, MB, Canada.
Audrey LaporteInstitute of Health Policy, Management, and Evaluation (AL), University of Toronto, Toronto, ON, Canada.
Adalsteinn BrownDalla Lana School of Public Health (AB), University of Toronto, Toronto, ON, Canada.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundChildren with the chronic disease multiple sclerosis (MS) report lower health-related quality of life (HRQOL) compared with children who experience transient illness. The relationship between an MS diagnosis and the HRQOL of affected children is mediated by parental HRQOL. Interventions to improve the HRQOL of children with MS should, therefore, include parents of affected children.

methodsWe performed a configurative review for improvements in the HRQOL of children facing diseases similar to MS and their parents. We used the generated concepts to form theories. Next, we performed qualitative interviews with clinicians who care for children with MS to characterize overlap between the proposed theories and usual care. Finally, we generated recommendations for improving the HRQOL of children with MS and their parents.

resultsWe theorize that the HRQOL of children with MS and their parents may be improved by strengthening self-concept, hope, and knowledge. Qualitative interviews with 7 clinicians who care for children with MS revealed no common psychosocial care protocol. The interviews did, however, reveal sources of psychosocial care that overlap with the proposed theories and barriers to optimizing such care.

conclusionsGrounded in theory and clinically oriented practice, recommendations to improve the HRQOL of children with MS and their parents are to implement standardized screening, pool provider counseling strategies, create computer applications with psychosocial interventions, promote age-appropriate education resources, and secure positions for MS specialists.

Indexed as

demyelinationhealth-related quality of lifemultiple sclerosispediatric

Identifiers

PMID36711221
PMCPMC9881424

What OpenQuestion holds

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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.