Dataset Information

Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan.

ABSTRACT:

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.

SUBMITTER: Schaefer I

PROVIDER: S-EPMC7827995 | biostudies-literature | 2021 Jan

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan.

Schaefer Isabelle I Heneka Nicole N Luckett Tim T Agar Meera R MR Chambers Suzanne K SK Currow David C DC Halkett Georgia G Disalvo Domenica D Amgarth-Duff Ingrid I Anderiesz Cleola C Phillips Jane L JL

BMC palliative care 20210123 1

<h4>Background</h4>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.<h4>Method</h4>A systematic environmental scan of web-based resources. A depersonalised search for online English-language ...[more]

PMID: 33485331

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Dataset Information

Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan.

Background

Method

Results

Conclusions

Publications

Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan.

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