ArticleSupportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer2016
Attitudes and preferences toward monitoring symptoms, distress, and quality of life in glioma patients and their informal caregivers.
Article in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 3 of them syntheses that pooled it.
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Who cites it
21 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- What are the experiences of supportive care in people affected by brain cancer and their informal caregivers: A qualitative systematic review.Journal of cancer survivorship : research and practice · 2024Pooled it
- Acceptance and Use of Home-Based Electronic Symptom Self-Reporting Systems in Patients With Cancer: Systematic Review.Journal of medical Internet research · 2021Pooled it
- Prevalence of symptoms in glioma patients throughout the disease trajectory: a systematic review.Journal of neuro-oncology · 2018Pooled it
- The effects of SmartCareSupportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2022Trial
- Improving quality of care for patients with high-grade glioma and their informal caregivers: Insights from focus groups with healthcare professionals.Neuro-oncology practice · 2026Article
- Well-being and coping: Key aspects of unmet need of people living with glioma.Neuro-oncology practice · 2025Article
- Missing the message to brain tumor patients: a 2023 twitter analysis among patients, informal caregivers, and healthcare professionals in glioblastoma multiforme.Journal of neuro-oncology · 2025Article
- "It's a delicate dance": How informal caregivers experience the role and responsibilities of supporting someone living with a lower-grade glioma.Neuro-oncology practice · 2025Article
- Patient and Provider Perspectives on Symptom Monitoring During Outpatient Chemotherapy: Interview Study.JMIR formative research · 2023Article
- Family caregiver constructs and outcome measures in neuro-oncology: A systematic review.Neuro-oncology practice · 2022Review
- eHealth Interventions for Dutch Cancer Care: Systematic Review Using the Triple Aim Lens.JMIR cancer · 2022Review
- The role of informal caregivers for patients with glioma: a systematic review and meta-synthesis of qualitative studies.Annals of translational medicine · 2021Article
- Psychometric validity and reliability of the Danish version of the MD Anderson Symptom Inventory Brain Tumor Module.Neuro-oncology practice · 2021Article
- Research on cognitive and sociocognitive functions in patients with brain tumours: a bibliometric analysis and visualization of the scientific landscape.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2020Article
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- Quality improvement of neuro-oncology services: integrating the routine collection of patient-reported, health-related quality-of-life measures.Neuro-oncology practice · 2019Article
- Symptom-based interventions to promote quality survivorship.Neuro-oncology · 2018Article
- Psychiatric co-morbidity, distress, and use of psycho-social services in adult glioma patients-a prospective study.Acta neurochirurgica · 2018Article
- Screening for symptom burden and supportive needs of patients with glioblastoma and brain metastases and their caregivers in relation to their use of specialized palliative care.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2017Article
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeGlioma patients and their informal caregivers face many challenges in living with the disease and its disease-specific consequences. To better meet their needs, a system to monitor symptoms, distress, and quality of life could prove useful. We explored glioma patients' and caregivers' attitudes and preferences toward monitoring in general and specifically toward paper-and-pencil and computerized (eHealth) options.
methodsIn total, 15 patients and 15 informal caregivers participated in individual, semi-structured interviews. Interviews were transcribed smooth verbatim and coded by two researchers independently.
resultsAdvantages of monitoring generated by participants include increased awareness of problems and their flow over time, and facilitating supportive care provision. Disadvantages include investment of time and mastering the discipline to monitor frequently. Patients reported more disadvantages of monitoring, including practical and disease-specific impediments, while caregivers mentioned more advantages. Preferences for specific methods mentioned to monitor are highly personal but most prefer to have an option for face-to-face contact to discuss results of monitoring with health care professionals even in computerized instruments.
conclusionsInformal caregivers view a monitoring system more favorably than glioma patients. In developing an efficient monitoring system to help glioma patients and caregivers find their way to supportive care, a computerized instrument with the added opportunity to contact a health care professional seems to be the best option to advise.
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