Evidence map›Paper›PMID 36929011›Full record

ArticleHealth expectations : an international journal of public participation in health care and health policy2023

Whole-body MRI for cancer surveillance in ataxia-telangiectasia: A qualitative study of the perspectives of people affected by A-T and their families.

Renata Neves, Blanca de Dios Perez, Tierney Tindall, Natasha Schneider Fernandez, Rafal Panek, Sophie Wilne, Mohnish Suri, William Whitehouse, Sumit Jagani, Madhumita Dandapani and 2 more

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

Article in Health expectations : an international journal of public participation in health care and health policy, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
0.9field-weighted citation impact, top 25% 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

3 citing papers in PubMed, 6 citations in OpenAlex.

  1. Article
  2. Article
  3. Whole-body MRI for cancer surveillance in ataxia-telangiectasia: A qualitative study of the perspectives of people affected by A-T and their families.Health expectations : an international journal of public participation in health care and health policy · 2023
    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

12 authors at 3 institutions in 1 country.

Renata NevesRadiological Sciences, Mental Health and Division of Clinical Neuroscience, University of Nottingham, Nottingham, UK.ORCID 0000-0001-8835-2366
Blanca de Dios PerezDivision of Rehabilitation, Ageing and Wellbeing, Centre for Rehabilitation and Ageing Research, School of Medicine, University of Nottingham, Nottingham, UK.
Tierney TindallMental Health and Division of Clinical Neuroscience, School of Medicine, University of Nottingham, Nottingham, UK.
Natasha Schneider FernandezIndependent Patient and Parent Representative, Nottingham, UK.
Rafal PanekDepartment of Medical Physics and Clinical Engineering, Nottingham University Hospitals NHS Trust, Nottingham, UK.
Sophie WilneDepartment of Paediatric Oncology, Nottingham University Hospitals NHS Trust, Nottingham, UK.
Mohnish SuriNottingham Clinical Genetics Service, Nottingham University Hospitals NHS Trust, Nottingham, UK.
William WhitehouseDivision of Child Health, Obstetrics and Gynaecology, School of Medicine, University of Nottingham, Nottingham, UK.
Sumit JaganiDepartment of Radiology, Nottingham Children's Hospital, Nottingham University Hospitals NHS Trust, Nottingham, UK.
Madhumita DandapaniChildren's Brain Tumour Research Centre, Medical School, University of Nottingham, Nottingham, UK.ORCID 0000-0001-8444-6007
Robert A DineenRadiological Sciences, Mental Health and Division of Clinical Neuroscience, University of Nottingham, Nottingham, UK.
Cris GlazebrookInstitute of Mental Health, University of Nottingham, Nottingham, UK.
University of Nottingham · GBNottingham University Hospitals NHS Trust · GBOldham Council · GB

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

BACKGROUND/

objectivesAtaxia-telangiectasia (A-T) is a complex inherited disease associated with an increased risk of malignancy. Surveillance guidelines have demonstrated significant health benefits in other cancer predisposition syndromes. However, evidence-based guidelines for cancer screening are not currently used in the United Kingdom for people affected by A-T. This study aims to understand how people with A-T and their parents feel about cancer surveillance using whole-body magnetic resonance imaging (MRI) to inform the future development of cancer surveillance guidelines. DESIGN/

methodsWe conducted semistructured interviews with people affected by A-T. Data were analysed inductively using thematic analysis.

resultsNine parents of children with A-T and four adults with A-T were interviewed. Five main themes emerged from the data, including (1) cancer screening was considered invaluable with the perceived value of early detection highlighted; (2) the cancer fear can increase anxiety; (3) the perceived limitations around current practice, with the responsibility for monitoring falling too strongly on parents and patients; (4) the need for effective preparation for cancer screening, including clear communication and (5) the challenges associated with MRI screening, where specific recommendations were made for improving the child's experience.

conclusionThis study suggests that stakeholders are positive about the perceived advantages of a cancer screening programme. Ongoing support and preparation techniques should be adopted to maximise adherence and minimise adverse psychosocial outcomes. PATIENT OR PUBLIC CONTRIBUTION: People with A-T and parents of people with A-T were actively involved in this study by giving their consent to be interviewed. An independent parent representative contributed to the study, supporting the research team in interpreting and commenting on the appropriateness of the language used in this report.

Indexed as

Ataxia TelangiectasiaNeoplasmsAdultChildHumansMagnetic Resonance ImagingParentsWhole Body Imagingcancer predispositionlife-limiting diseasepsychosocial impactPublic and Patient Involvement and Engagementqualitative research

Identifiers

PMID36929011
PMCPMC10154855
OpenAlexW4327676761

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.