ArticleBMC palliative care2021
Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan.
Article in BMC palliative care, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 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
13 citing papers in PubMed, 19 citations in OpenAlex.
- Carer preparedness improved by providing a supportive educational intervention for carers of patients with high-grade glioma: RCT results.Journal of neuro-oncology · 2023Trial
- Nurse-identified needs, recommendations, and referrals during consultations with family carers of patients diagnosed with high-grade glioma.Neuro-oncology practice · 2025Article
- Co-designing a web-based intervention (RESTORE) to support self-management of cancer-related fatigue in people living with a brain tumour.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Article
- Identifying and understanding how people living with a lower-grade glioma engage in self-management.Journal of cancer survivorship : research and practice · 2024Article
- Challenges and opportunities in newly diagnosed glioblastoma in the United Kingdom: A Delphi panel.Neuro-oncology practice · 2024Article
- Article
- Conspiracy of Silence in Head and Neck Cancer Diagnosis: A Scoping Review.Dentistry journal · 2024Article
- Understanding supported self-management for people living with a lower-grade glioma: Implementation considerations through the lens of normalisation process theory.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Exploratory multi-methods evaluation of an online intervention for carers of people with high-grade glioma.Neuro-oncology practice · 2023Article
- Article
- An Examination of Patients and Caregivers on Reddit Navigating Brain Cancer: Content Analysis of the Brain Tumor Subreddit.JMIR cancer · 2022Article
- Supportive care of patients diagnosed with high grade glioma and their carers in Australia.Journal of neuro-oncology · 2022Article
- Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
11 authors at 3 institutions in 1 country.
Funding
Abstract
backgroundA primary brain cancer diagnosis is a distressing, life changing event. It adversely affects the quality of life for the person living with brain cancer and their families ('carers'). Timely access to evidence-based information is critical to enabling people living with brain cancer, and their carers, to self-manage the devastating impacts of this disease.
methodA systematic environmental scan of web-based resources. A depersonalised search for online English-language resources published from 2009 to December 2019 and designed for adults (> 25 years of age), living with primary brain cancer, was undertaken using the Google search engine. The online information was classified according to: 1) the step on the cancer care continuum; 2) self-management domains (PRISMS taxonomy); 3) basic information disclosure (Silberg criteria); 4) independent quality verification (HonCode); 5) reliability of disease and treatment information (DISCERN Sections 1 and 2); and readability (Flesch-Kincaid reading grade).
resultsA total of 119 online resources were identified, most originating in England (n = 49); Australia (n = 27); or the USA (n = 27). The majority of resources related to active treatment (n = 76), without addressing recurrence (n = 3), survivorship (n = 1) or palliative care needs (n = 13). Few online resources directly provided self-management advice for adults living with brain cancer or their carers. Just over a fifth (n = 26, 22%) were underpinned by verifiable evidence. Only one quarter of organisations producing resources were HonCode certified (n = 9, 24%). The median resource reliability as measured by Section 1, DISCERN tool, was 56%. A median of 8.8 years of education was required to understand these online resources.
conclusionsMore targeted online information is needed to provide people affected by brain cancer with practical self-management advice. Resources need to better address patient and carer needs related to: rehabilitation, managing behavioural changes, survivorship and living with uncertainty; recurrence; and transition to palliative care. Developing online resources that don't require a high level of literacy and/or cognition are also required.
Indexed as
Identifiers
What 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.