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 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.
| Medienart: |
E-Artikel |
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| Erscheinungsjahr: |
2021 |
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| Erschienen: |
2021 |
| Enthalten in: |
Zur Gesamtaufnahme - volume:20 |
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| Enthalten in: |
BMC palliative care - 20(2021), 1 vom: 23. Jan., Seite 22 |
| Sprache: |
Englisch |
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| Beteiligte Personen: |
Schaefer, Isabelle [VerfasserIn] |
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| Links: |
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| Themen: |
Brain neoplasms |
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| Anmerkungen: |
Date Completed 15.10.2021 Date Revised 15.10.2021 published: Electronic Citation Status MEDLINE |
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| doi: |
10.1186/s12904-021-00715-4 |
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| funding: |
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| Förderinstitution / Projekttitel: |
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| PPN (Katalog-ID): |
NLM320475107 |
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| 100 | 1 | |a Schaefer, Isabelle |e verfasserin |4 aut | |
| 245 | 1 | 0 | |a Quality of online self-management resources for adults living with primary brain cancer, and their carers |b a systematic environmental scan |
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| 500 | |a Date Revised 15.10.2021 | ||
| 500 | |a published: Electronic | ||
| 500 | |a Citation Status MEDLINE | ||
| 520 | |a 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 | ||
| 520 | |a 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) | ||
| 520 | |a 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 | ||
| 520 | |a 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 | ||
| 650 | 4 | |a Journal Article | |
| 650 | 4 | |a Brain neoplasms | |
| 650 | 4 | |a Cancer | |
| 650 | 4 | |a Consumer health information | |
| 650 | 4 | |a Online | |
| 650 | 4 | |a Self-management | |
| 700 | 1 | |a Heneka, Nicole |e verfasserin |4 aut | |
| 700 | 1 | |a Luckett, Tim |e verfasserin |4 aut | |
| 700 | 1 | |a Agar, Meera R |e verfasserin |4 aut | |
| 700 | 1 | |a Chambers, Suzanne K |e verfasserin |4 aut | |
| 700 | 1 | |a Currow, David C |e verfasserin |4 aut | |
| 700 | 1 | |a Halkett, Georgia |e verfasserin |4 aut | |
| 700 | 1 | |a Disalvo, Domenica |e verfasserin |4 aut | |
| 700 | 1 | |a Amgarth-Duff, Ingrid |e verfasserin |4 aut | |
| 700 | 1 | |a Anderiesz, Cleola |e verfasserin |4 aut | |
| 700 | 1 | |a Phillips, Jane L |e verfasserin |4 aut | |
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