Evidence map›Paper›PMID 42740868›Full record

ArticleClinical and public health guidelines2026

The Values and Preferences of People Living With Motor Neurone Disease (MND): A Systematic Review and Meta-Analysis.

Timothy Hugh Barker, Lemma N Bulto, Grace Holland, Camille Schubert, Tracy Merlin, Samer G Karam, Wojtek Wiercioch, Danielle Pollock, Cindy Stern, Jay Beasley-Hall and 4 more

Erratum issuedAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Clinical and public health guidelines, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
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.

  1. Article
  2. Article
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

14 authors.

Timothy Hugh BarkerHealth Evidence Synthesis, Recommendations and Impact (HESRI) School of Public Health, College of Health, Adelaide University Adelaide South Australia Australia.ORCID https://orcid.org/0000-0002-6897-814X
Lemma N BultoHealth Evidence Synthesis, Recommendations and Impact (HESRI) School of Public Health, College of Health, Adelaide University Adelaide South Australia Australia.
Grace HollandHealth Evidence Synthesis, Recommendations and Impact (HESRI) School of Public Health, College of Health, Adelaide University Adelaide South Australia Australia.
Camille SchubertAdelaide Health Technology Assessment (AHTA) School of Public Health, College of Health, Adelaide University Adelaide South Australia Australia.ORCID https://orcid.org/0000-0003-0828-1612
Tracy MerlinMichael G. DeGroote Cochrane Canada & McMaster GRADE Centres McMaster University Hamilton Ontario Canada.
Samer G KaramMichael G. DeGroote Cochrane Canada & McMaster GRADE Centres McMaster University Hamilton Ontario Canada.
Wojtek WierciochMichael G. DeGroote Cochrane Canada & McMaster GRADE Centres McMaster University Hamilton Ontario Canada.ORCID https://orcid.org/0000-0001-6576-1650
Danielle PollockHealth Evidence Synthesis, Recommendations and Impact (HESRI) School of Public Health, College of Health, Adelaide University Adelaide South Australia Australia.ORCID https://orcid.org/0000-0002-6604-0609
Cindy SternHealth Evidence Synthesis, Recommendations and Impact (HESRI) School of Public Health, College of Health, Adelaide University Adelaide South Australia Australia.ORCID https://orcid.org/0000-0002-0924-5042
Jay Beasley-HallUniversity Library, Adelaide University Adelaide South Australia Australia.
Nipun ShresthaHealth Evidence Synthesis, Recommendations and Impact (HESRI) School of Public Health, College of Health, Adelaide University Adelaide South Australia Australia.
Steve VucicBrain and Nerve Research Centre Concord Clinical School, The University of Sydney Sydney New South Wales Australia.ORCID https://orcid.org/0000-0002-8323-873X
Lynne GilesSchool of Public Health, College of Health, Adelaide University Adelaide South Australia Australia.
Zachary MunnHealth Evidence Synthesis, Recommendations and Impact (HESRI) School of Public Health, College of Health, Adelaide University Adelaide South Australia Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Aim: To synthesise quantitative evidence on the values and preferences of people living with Motor Neurone Disease (MND), caregivers, and genetic carriers regarding health-related outcomes to inform the Australian MND Guideline. Methods: A systematic review was conducted following Cochrane and GRADE guidance, informed by an Results: Twenty-four studies ( Conclusion: This review provides a comprehensive synthesis of the values and preferences of the broad MND community. This review has been conducted following rigorous best-practice methodology, to directly inform the selection and prioritisation of outcomes for the development of the Australian MND Guideline, ensuring the guideline adheres to a patient-centred approach. Standardisation of preference elicitation methods from the MND community, and the development of a core outcome set for future MND research are key future priorities.

Indexed as

motor neurone diseasepreferencesvaluation of outcomesvalues

Identifiers

PMID42740868
PMCPMC13563401

What OpenQuestion holds

Textmetadata
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.