Evidence map›Paper›PMID 41440219›Full record

ArticleCurrent oncology (Toronto, Ont.)2025

Building Better Website Resources: What People Diagnosed with Sarcoma and Their Carers Want to Know.

Georgia K B Halkett, Jenny Davies, Chloe Maxwell-Smith, Connor Farnell, Mandy Basson, Tania Rice-Brading, Mariana S Sousa, Janene Sproul, Helen M De Jong, Haryana M Dhillon and 2 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Current oncology (Toronto, Ont.), 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed, 1 pooled it
–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 synthesis or guideline pooled it.

  1. Pooled it
  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

12 authors.

Georgia K B HalkettCurtin School of Nursing, Faculty of Health Sciences, Curtin University, Perth, WA 6102, Australia.ORCID 0000-0003-4065-4044
Jenny DaviesCurtin School of Nursing, Faculty of Health Sciences, Curtin University, Perth, WA 6102, Australia.ORCID 0000-0002-9498-1422
Chloe Maxwell-SmithCurtin Medical Research Institute, Faculty of Health Sciences, Curtin University, Perth, WA 6102, Australia.ORCID 0000-0003-1694-2732
Connor FarnellCurtin School of Nursing, Faculty of Health Sciences, Curtin University, Perth, WA 6102, Australia.ORCID 0009-0005-0246-1083
Mandy BassonThe Abbie Basson Sarcoma Foundation Ltd. Sock it to Sarcoma!, Perth, WA 6906, Australia.ORCID 0009-0007-6845-7102
Tania Rice-BradingCooper Rice-Brading Foundation, Sydney, NSW 2011, Australia.
Mariana S SousaImproving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Ultimo, NSW 2007, Australia.ORCID 0000-0001-5034-9946
Janene SproulSchool of Education, Murdoch University, Perth, WA 6150, Australia.ORCID 0000-0003-3271-4350
Helen M De JongCurtin School of Allied Health, Curtin University, Perth, WA 6102, Australia.ORCID 0000-0002-7390-4110
Haryana M DhillonPsycho-Oncology Cooperative Research Group (PoCoG), School of Psychology, Faculty of Science, The University of Sydney, Camperdown, NSW 2050, Australia.ORCID 0000-0003-4039-5169
Joanna Elizabeth FardellSchool of Clinical Medicine, Faculty of Medicine and Health, University of New South Wales, Sydney, NSW 2033, Australia.ORCID 0000-0001-7334-3475
Moira O'ConnorCurtin Medical Research Institute, Faculty of Health Sciences, Curtin University, Perth, WA 6102, Australia.ORCID 0000-0002-7298-5553

Funding

Cancer Australia N/A
6 · The paper itself

Abstract

People diagnosed with sarcoma and their carers often face significant unmet information needs that adversely affect their quality of life. A contributing factor is the limited availability of accessible, high-quality online information. This study aimed to determine the information needs of people affected by sarcoma from the perspectives of people with sarcoma, carers and healthcare professionals, to inform the development of web-based resources. People with sarcoma (n = 18), carers (n = 11), bereaved carers (n = 8) and healthcare professionals (n = 22) participated in interviews or focus groups (total N = 59). Data were analysed thematically. Nine themes were identified: “Accessing Useful Information About Diagnosis and Treatment”; “Learning to live with Sarcoma”; “Gaining Access to Psychosocial Support”; “Connecting with the Sarcoma Community”, “Obtaining Financial Support”; “Carer Self-Care”; “Facilitating Support for Family”; “Understanding Palliative Care”; and “Preparing for Bereavement and Coping After Death”. Findings support the development of a dedicated sarcoma website as a key step towards addressing their unmet needs. People with sarcoma and their carers highlighted that such a resource would not only improve access to reliable sarcoma-specific information, but also create opportunities for connection and shared experiences among individuals and families affected by sarcoma.

Indexed as

CaregiversInternetSarcomaHumanscarersfocus groupshealthcare professionalsinterviewspatientsqualitative researchrare cancersarcomasurvivorship carewebsite development

Identifiers

PMID41440219
PMCPMC12732211

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.