Co-Designing a User-Centered Digital Health Tool for Supportive Care Needs of Patients With Brain Tumors and Their Caregivers: Interview Analysis
Abstract BackgroundBrain 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 tum...
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| Main Authors: | , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
JMIR Publications
2025-05-01
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| Series: | JMIR Cancer |
| Online Access: | https://cancer.jmir.org/2025/1/e53690 |
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| Summary: | Abstract
BackgroundBrain 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.
ObjectiveThis 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.
MethodsPatients 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.
ResultsFour 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.
ConclusionsParticipants’ 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. |
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| ISSN: | 2369-1999 |