Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan
Background: A 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...
| Main Authors: | , , , , , , , , , , |
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| Format: | Journal Article |
| Language: | English |
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2021
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| Subjects: | |
| Online Access: | http://hdl.handle.net/20.500.11937/86666 |
| _version_ | 1848764852707786752 |
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| author | Schaefer, I. Heneka, N. Luckett, T. Agar, M.R. Chambers, S.K. Currow, D.C. Halkett, Georgia Disalvo, D. Amgarth-Duff, I. Anderiesz, C. Phillips, J.L. |
| author_facet | Schaefer, I. Heneka, N. Luckett, T. Agar, M.R. Chambers, S.K. Currow, D.C. Halkett, Georgia Disalvo, D. Amgarth-Duff, I. Anderiesz, C. Phillips, J.L. |
| author_sort | Schaefer, I. |
| building | Curtin Institutional Repository |
| collection | Online Access |
| description | Background: A 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.
Method: A 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).
Results: A 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.
Conclusions: More 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. |
| first_indexed | 2025-11-14T11:25:57Z |
| format | Journal Article |
| id | curtin-20.500.11937-86666 |
| institution | Curtin University Malaysia |
| institution_category | Local University |
| language | eng |
| last_indexed | 2025-11-14T11:25:57Z |
| publishDate | 2021 |
| recordtype | eprints |
| repository_type | Digital Repository |
| spelling | curtin-20.500.11937-866662021-12-07T05:21:54Z Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan Schaefer, I. Heneka, N. Luckett, T. Agar, M.R. Chambers, S.K. Currow, D.C. Halkett, Georgia Disalvo, D. Amgarth-Duff, I. Anderiesz, C. Phillips, J.L. Brain neoplasms Cancer Consumer health information Online Self-management Adult Brain Neoplasms Caregivers Humans Internet Quality of Life Reproducibility of Results Self-Management Background: A 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. Method: A 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). Results: A 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. Conclusions: More 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. 2021 Journal Article http://hdl.handle.net/20.500.11937/86666 10.1186/s12904-021-00715-4 eng http://creativecommons.org/licenses/by/4.0/ fulltext |
| spellingShingle | Brain neoplasms Cancer Consumer health information Online Self-management Adult Brain Neoplasms Caregivers Humans Internet Quality of Life Reproducibility of Results Self-Management Schaefer, I. Heneka, N. Luckett, T. Agar, M.R. Chambers, S.K. Currow, D.C. Halkett, Georgia Disalvo, D. Amgarth-Duff, I. Anderiesz, C. Phillips, J.L. Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan |
| title | Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan |
| title_full | Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan |
| title_fullStr | Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan |
| title_full_unstemmed | Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan |
| title_short | Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan |
| title_sort | quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan |
| topic | Brain neoplasms Cancer Consumer health information Online Self-management Adult Brain Neoplasms Caregivers Humans Internet Quality of Life Reproducibility of Results Self-Management |
| url | http://hdl.handle.net/20.500.11937/86666 |