Evidence map›Paper›PMID 31575582›Full record

ArticleBMJ open2019

What is the best way to keep walking and moving around for individuals with Machado-Joseph disease? A scoping review through the lens of Aboriginal families with Machado-Joseph disease in the Top End of Australia.

Jennifer J Carr, Joyce Lalara, Gayangwa Lalara, Moira Smith, Jennifer Quaill, Alan R Clough, Anne Lowell, Ruth N Barker

Open access · goldAbstract readScoping Review
PubMed Full text at PMC Publisher
In one paragraph

Article in BMJ open, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
0.4field-weighted citation impact, top 42% 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

2 citing papers in PubMed, 6 citations in OpenAlex.

  1. Article
  2. Article
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 3 institutions in 1 country.

Jennifer J CarrJames Cook University, College of Healthcare Sciences, Cairns, Queensland, Australia jennifer.carr2@my.jcu.edu.au.ORCID 0000-0002-9612-0722
Joyce LalaraMachado-Joseph Disease Foundation, Alyangula, Northern Territory, Australia.
Gayangwa LalaraMachado-Joseph Disease Foundation, Alyangula, Northern Territory, Australia.
Moira SmithJames Cook University, College of Healthcare Sciences, Townsville, Queensland, Australia.
Jennifer QuaillJames Cook University, College of Healthcare Sciences, Townsville, Queensland, Australia.
Alan R CloughSchool of Public Health, Tropical Medicine and Rehabilitation Sciences, James Cook University, Cairns, Queensland, Australia.
Anne LowellNorthern Institute, Charles Darwin University, Darwin, Northern Territory, Australia.
Ruth N BarkerJames Cook University, College of Healthcare Sciences, Cairns, Queensland, Australia.
James Cook University · AUAustralian Institute of Tropical Health and Medicine · AUCharles Darwin University · AU

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivesMachado-Joseph disease (MJD) is the most common spinocerebellar ataxia worldwide. Prevalence is highest in affected remote Aboriginal communities of the Top End of Australia. Aboriginal families with MJD from Groote Eylandt believe 'staying strong on the inside and outside' works best to keep them walking and moving around, in accordance with six key domains that form the 'Staying Strong' Framework. The aim of this current study was to review the literature to: (1) map the range of interventions/strategies that have been explored to promote walking and moving around (functional mobility) for individuals with MJD and; (2) align these interventions to the 'Staying Strong' Framework described by Aboriginal families with MJD.

designScoping review. DATA SOURCES: Searches were conducted in July 2018 in MEDLINE, EMBASE, CINAHL, PsychINFO and Cochrane Databases. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Peer-reviewed studies that (1) included adolescents/adults with MJD, (2) explored the effects of any intervention on mobility and (3) included a measure of mobility, function and/or ataxia were included in the review.

resultsThirty studies were included. Few studies involved participants with MJD alone (12/30). Most studies explored interventions that aligned with two 'Staying Strong' Framework domains, 'exercising your body' (n=13) and 'searching for good medicine' (n=17). Few studies aligned with the domains having 'something important to do' (n=2) or 'keeping yourself happy' (n=2). No studies aligned with the domains 'going country' or 'families helping each other'.

conclusionsEvidence for interventions to promote mobility that align with the 'Staying Strong' Framework were focused on staying strong on the outside (physically) with little reflection on staying strong on the inside (emotionally, mentally and spiritually). Findings suggest future research is required to investigate the benefits of lifestyle activity programmes that address both physical and psychosocial well-being for families with MJD.

Indexed as

LocomotionWalkingAustraliaFamilyHumansMachado-Joseph DiseaseMobility LimitationMachado Joseph diseasemobilityphysicalspinocerebellar ataxiawalk

Identifiers

PMID31575582
PMCPMC6797313
OpenAlexW2978014766

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
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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.