Trial reportJournal of neuro-oncology2021
How much time do we have? Longitudinal perception of prognosis in newly-diagnosed high grade glioma patients and caregivers compared to clinicians.
Trial report in Journal of neuro-oncology, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04630379 (Pilot Study of Early Integration of Palliative Care Using the BEACON PROQOL in Patients With High Grade Glioma and Their Caregivers), which is not on this map. Cited by 11 papers.
What it found
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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.
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.
Pilot Study of Early Integration of Palliative Care Using the BEACON PROQOL in Patients With High Grade Glioma and Their Caregivers
Who cites it
11 citing papers in PubMed, 20 citations in OpenAlex.
- Coping with primary brain tumors together: a scoping review of dyadic psychosocial interventions.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026Article
- Prognostic awareness in family caregivers of patients with terminal illness: a scoping review.BMJ open · 2025Article
- Illness understanding and religiousness in patients with recurrent glioblastoma.Neuro-oncology practice · 2025Article
- Identifying research priorities and essential elements of palliative care services for people facing malignant brain tumors: A participatory co-design approach.Neuro-oncology practice · 2024Article
- Patient-Caregiver Dyads' Prognostic Information Preferences and Perceptions in Advanced Cancer.Journal of pain and symptom management · 2023Article
- Distress in Neuro-Oncology Patients and Its Implications for Communication.Journal of the advanced practitioner in oncology · 2023Article
- Decisional needs of patients with recurrent high-grade glioma and their families.Neuro-oncology practice · 2022Article
- Development of a Patient Decision Aid to Support Shared Decision Making for Patients with Recurrent High-Grade Glioma.International journal of environmental research and public health · 2022Article
- Coping with glioblastoma: prognostic communication and prognostic understanding among patients with recurrent glioblastoma, caregivers, and oncologists.Journal of neuro-oncology · 2022Article
- Easing the Journey-an Updated Review of Palliative Care for the Patient with High-Grade Glioma.Current oncology reports · 2022Review
- High grade glioma and caregiver burden.Journal of neuro-oncology · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 4 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeDiscordant prognostic awareness (PA) can cause distress, impact goals of care and future planning, especially in patients with high grade glioma (pwHGG) who have limited survival. We aimed to evaluate the feasibility of assessing PA of pwHGG, caregivers and clinicians using a single question and to evaluate these responses for discord, alignment and fluctuation over time.
methodsThis is a sub-study of an IRB-approved pilot study evaluating early palliative care and longitudinal symptom monitoring via a smart-device tool in 16 pwHGG and their caregivers receiving treatment at the Mayo Clinic Arizona (United States). Eligible patients were ≥ 18 years, English-speaking, newly-diagnosed, and had a willing caregiver. Participants answered a multiple-choice question asking for an estimate of their own or their loved one's survival on a monthly basis.
resultsAll except one patient/caregiver dyad answered the question each time it was asked. The question did not appear to cause discomfort or increase conversations with clinicians around prognosis. PA of patients and caregivers fluctuated monthly, ranging from dismal to overtly optimistic, with a discordance frequency of 68%. Patients tended to be more optimistic than caregivers, and a higher QOL correlated to a more optimistic response. Clinicians' were more hopeful; their prediction tended to fluctuate less than those of patients and caregivers.
conclusionsPA may be assessed in pwHGG and caregivers with a single, frank question. There is clear discordance between PA of patients, their caregivers and clinicians. Understanding fluctuates longitudinally through disease and treatment course. Additional studies on timing and ways of discussing prognosis in this population are needed. CLINICAL
trial registrationNCT04630379.
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Registered trials
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.