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

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 (>25years 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 8.8years 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.

Automated summary

More targeted online information is needed to provide practical self-management advice for adults living with primary brain cancer and their carers. Resources should address patient and carer needs related to rehabilitation, managing behavioral changes, survivorship, living with uncertainty, recurrence, and transition to palliative care, while also being accessible to individuals with lower literacy and cognitive skills.