ArticleJournal of neuro-oncology2022
The burden of a brain tumor: guiding patient centric care in neuro-oncology.
Article in Journal of neuro-oncology, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
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.
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.
Who cites it
12 citing papers in PubMed.
- Desired Support and Design Preferences for a Supported Self-Management Intervention for People With Lower-Grade Gliomas: Co-Design Findings From the Ways Ahead Project.Psycho-oncology · 2026Article
- Special Issue "Translating Molecular Psychiatry: From Biomarkers to Personalized Therapies".International journal of molecular sciences · 2025Article
- Predicting Caregiver Anxiety and Depression From Patient Distress in Brain Tumor Dyads: Actor-Partner Interdependence Model.Cancer medicine · 2025Observational
- Spirituality in Professional Patient-Centered Care for Adults with Primary Brain Tumors: An Exploratory Scoping Review.Journal of religion and health · 2025Article
- Longitudinal Psychological Distress After Malignant Brain Tumor Diagnosis: A Multilevel Analysis of Patients and Their Caregivers.Psycho-oncology · 2025Observational
- The impact of a primary brain tumor diagnosis on caregivers: Insights from the patients' perspective.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2024Article
- "Not me!" a qualitative, vignette-based study of nurses' and physicians' reactions to spiritual distress on neuro-oncological units.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2024Article
- Primary brain tumor representation in the post-traumatic growth literature: A scoping review.Neuro-oncology practice · 2024Article
- In Their Own Words: Fears Expressed by People with Parkinson's Disease in an Online Symptom Database.Journal of Parkinson's disease · 2024Article
- Psycho-oncological burden in patients with brain metastases undergoing neurological surgery.Frontiers in oncology · 2024Article
- The emotional journey of neuro-oncology: Primary brain tumor patients share their experience during this life-threatening disease.Neuro-oncology practice · 2023Article
- Social relationships and relational pain in brain tumor patients and their partners.Frontiers in pain research (Lausanne, Switzerland) · 2022Review
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeBrain tumor patients report an overwhelming sense of uncertainty when navigating the course of their terminal disease. Historically, organizational experts and/or treating physicians have established neuro-oncology programs. However, given the disease burden and incurable nature of current medical treatments, patient-centric care should be prioritized alongside institutional and academic objectives. Integrating patient perspectives into interdisciplinary programmatic development can improve comprehensive care and empower patients to advocate for their own quality healthcare needs.
methodsData was derived from four focus groups with adult brain tumor patients (N = 15; M
resultsSix distinct themes emerged, where the frequency of each theme ranged from 12.5 to 23.3%. Specifically, patients discussed relational concerns, navigation of interdisciplinary care, neurobehavioral impacts, emotional responses to stressors, existential concerns, and caregiver support. A discussion of themes follows.
conclusionsIt is imperative that we include the patient perspective in the development of neuro-oncology programs; considering the quality of survival in addition to quantity. Neuro-oncology quality care themes identified were relational concerns, navigating interdisciplinary care, neurobehavioral impact, emotional response to stressors, existential concerns, and caregiver support. A paramount concentration for comprehensive neuro-oncology programs must include patients' quality needs.
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35394618What OpenQuestion holds
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.