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.

Exploring the most visible websites on cutaneous T‐cell lymphoma—revealing limited quality of patient health information on the internet

“…Only 23 (25.8%) websites provided HONcode certification. This low use of quality certificates in CTCL websites is in accordance with certification of other cancer information providing websites including websites on melanoma 21,26–30 . One reason for the low presence of certified websites might be the certification process.…”

“…This low use of quality certificates in CTCL websites is in accordance with certification of other cancer information providing websites including websites on melanoma. 21,[26][27][28][29][30] One reason for the low presence of certified websites might be the certification process. After registration webmasters have to apply every year for fee-based website certification.…”

Evaluation of the usability, content, readability and cultural appropriateness of online alcohol and other drugs resources for Aboriginal and Torres Strait Islander Peoples in New South Wales, Australia

“…This ability is essential to understand and complete healthcare forms, such as consent forms or other health-related resources, and to make decisions and manage one’s health 11 15. The inability to read and understand resources can have a negative effect on health outcomes and quality of care provided by family or carers 16 17. Individuals with low health literacy are less likely to be involved in their health management, thus affecting their access to healthcare and quality of care 18–20.…”

Supportive care of patients diagnosed with high grade glioma and their carers in Australia

“…Consequently, people diagnosed with HGG and their carers experience high levels of distress and have significant unmet supportive care needs [ 6 – 8 ]. Patients and their carers require timely access to support and evidence-based information to manage their disease and its impact [ 9 ].…”