Evidence map›Paper›PMID 40408266›Full record

ArticleJMIR cancer2025

Co-Designing a User-Centered Digital Health Tool for Supportive Care Needs of Patients With Brain Tumors and Their Caregivers: Interview Analysis.

Mahima Kalla, Ashleigh Bradford, Verena Schadewaldt, Kara Burns, Sarah C E Bray, Sarah Cain, Heidi McAlpine, Rana S Dhillon, Wendy Chapman, James R Whittle and 2 more

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PubMed Full text at PMC Publisher
In one paragraph

Article in JMIR cancer, 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.

Mahima KallaCentre for Digital Transformation of Health, Faculty of Medicine, Dentistry and Health Sciences, The University of Melbourne, Grattan Street, Parkville, VIC, 3010, Australia, +61 3 8344 4000.ORCID 0000-0001-5349-0873
Ashleigh BradfordDepartment of Health Services Research and Implementation Science, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia.ORCID 0009-0002-5602-7993
Verena SchadewaldtDepartment of Neurosurgery, The Royal Melbourne Hospital, Parkville, VIC, Australia.ORCID 0000-0003-3256-6458
Kara BurnsCentre for Digital Transformation of Health, Faculty of Medicine, Dentistry and Health Sciences, The University of Melbourne, Grattan Street, Parkville, VIC, 3010, Australia, +61 3 8344 4000.ORCID 0000-0002-6491-4405
Sarah C E BrayDepartment of Neurosurgery, The Royal Melbourne Hospital, Parkville, VIC, Australia.ORCID 0000-0001-7067-4551
Sarah CainDepartment of Neurosurgery, The Royal Melbourne Hospital, Parkville, VIC, Australia.ORCID 0000-0002-3955-4137
Heidi McAlpineDepartment of Neurosurgery, The Royal Melbourne Hospital, Parkville, VIC, Australia.ORCID 0000-0002-5718-2517
Rana S DhillonDepartment of Surgery, Faculty of Medicine, Dentistry and Health Sciences, The University of Melbourne, Parkville, VIC, Australia.ORCID 0000-0002-6975-8325
Wendy ChapmanCentre for Digital Transformation of Health, Faculty of Medicine, Dentistry and Health Sciences, The University of Melbourne, Grattan Street, Parkville, VIC, 3010, Australia, +61 3 8344 4000.ORCID 0000-0001-8702-4483
James R WhittlePersonalised Oncology Division, Walter and Eliza Hall Institute of Medical Research, Parkville, VIC, Australia.ORCID 0000-0002-4740-2037
Katharine J DrummondDepartment of Neurosurgery, The Royal Melbourne Hospital, Parkville, VIC, Australia.ORCID 0000-0002-8152-2120
Meinir KrishnasamyDepartment of Health Services Research and Implementation Science, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia.ORCID 0000-0002-3050-4213

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: Brain tumors are characterized by the high burden of disease that profoundly impacts the quality of life in patients and their families. Digital health tools hold tremendous potential to enhance supportive care and quality of life for patients with brain tumors and their caregivers. Objective: This study aims to generate ideas and concepts, through a co-design paradigm, to inform the development of a digital health tool to address the unmet needs of people affected by brain tumors. Methods: Patients with brain tumors, caregivers, and health professionals from 2 large public tertiary hospitals in Victoria, Australia, were invited to complete a qualitative interview discussing their unmet needs of care. Overall, 35 qualitative interviews focusing on unmet needs and concepts for a digital health tool were conducted with 13 patients, 11 caregivers, and 11 health professionals. Interviews were audio recorded and transcribed, and a 5-step framework analysis approach was used to analyze data. Results: Four themes of unmet supportive care needs emerged: (1) emotional and psychological, (2) information, (3) physical and practical, and (4) social connectedness. Participants expressed the desire for early and proactive mental health intervention, noted the importance of providing mental health support to caregivers, and emphasized the need for positive stories and affirmative language. From an information perspective, participants noted a sense of information overload, especially at the beginning. They also underscored the variety of information needed on an ongoing basis, including life after treatment, and comprehensive care assistance to maintain quality of life. Participants also described unmet supportive care needs relating to symptom burden, and practical and administrative support to facilitate the logistics of accessing treatment and accomplishing daily life tasks. Finally, they expressed the desire for greater social connectedness and safe spaces to engage with other people in a similar situation. Our findings are consistent with previous research on this subject and were integrated into the development of a web-based platform. Conclusions: Participants' perspectives informed the development of content for a web-based digital health platform called "Brain Tumours Online." The platform comprises three pillars-(1) "LEARN": a repository of vetted information about a range of biomedical and psychosocial care topics; (2) "CONNECT": a digital peer support community with a health care professional interface; and (3) "TOOLBOX": an emerging library of validated digital therapeutics for symptom management.

Indexed as

Brain NeoplasmsCaregiversHealth Services Needs and DemandUser-Centered DesignAdultAgedDigital HealthFemaleHumansInterviews as TopicMaleMiddle AgedNeeds AssessmentQualitative ResearchQuality of LifeSocial Supportbrain cancerbrain tumorcaregiversco-design paradigmconceptsdigital healtheffectivenessemotional supporthealth care professionalsideasinformation sharinginterview analysispatientspsychosocial supportqualitative researchquality of lifesocial connectednesssupportive careunmet needsuser-centered

Identifiers

PMID40408266
PMCPMC12124322

What OpenQuestion holds

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LicenceCC BY
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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.