‘Just Google it’—A scoping review of online mental health resources for survivors of breast cancer

As the Internet is a ubiquitous resource for information, we aimed to replicate a patient's Google search to identify and assess the quality of online mental health/wellbeing materials available to support women living with or beyond cancer.


| INTRODUCTION
Breast cancer is now the most diagnosed female cancer in the world, an increase of 20% in the last 10 years. 1 Breast cancer survival has also increased, with 92% of women now surviving 5 years postdiagnosis. 1 As such, there is a growing number of women who are now living with or beyond breast cancer, with many in need of psychosocial support. 2 Both the diagnosis and treatment of breast cancer can cause a range of biopsychosocial symptoms which impact daily living, employment and adherence to therapy. 3 This is compounded by fear of cancer recurrence/progression (FoR), with a recent systematic review reporting 42% of cancer survivors experience clinically relevant FoR, which can persist for 10 years posttreatment. 2 As a result, 65%-75% of women living with breast cancer report clinically significant psychosocial distress, including symptoms of depression and anxiety which is estimated to be 3-4 times more common in people with cancer than in the general population. 4Symptoms of depression are associated with reduced quality of life, higher suicide rate, poorer compliance to treatment (i.e., medication usage) and greater physical suffering. 5The quality of life of caregivers of cancer survivors is also affected and may lead to emotional distress, burnout and increased risk of depression and anxiety. 6Caregivers' unmet needs and challenges have been reported to include changes to sex life, FoR and lack of practical information. 7pression and other mental health challenges in people with cancer are largely managed through clinical intervention however, with the increased demand on mental health services, exacerbated by the impact of the COVID-19 pandemic, long wait times, out of pocket costs or inability to attend services (i.e., living remotely or unable to travel), accessing traditional mental health support avenues is increasingly challenging. 8Further, there is a subset of people that may not reach clinically significant levels of distress, but instead experience subclinical symptoms related to low wellbeing which increases the likelihood of suffering from a future mental illness. 9This is especially important to consider when recognising recent studies which show that a patient's positive mindset during cancer therapy has the potential to transform supportive oncology care 10 which is argued to be associated with improved quality of life. 11These resource limitations give rise to people needing to access high quality resources to support their self management initiatives, which through Internet searches, is practical. 12Access to appropriate resources is one way to enable self-management, equipping people to better understand their illness and symptoms, and prompting behavioural or lifestyle changes. 13In turn, this can result in reduced symptoms and improved clinical outcomes. 13In summary, it is unsurprising that people affected by cancer look to non-traditional resources to manage their mental health and wellbeing.
The Internet has become a major resource for consumers with ubiquitous health-related information of all types of modalities used by patients with cancer to develop questions to discuss with physicians and to optimise the support provided by health care professionals. 12,14A systematic review of information needed by patients with cancer found that their priorities related to prognosis, diagnosis and treatment information. 15The Internet has become the most convenient option for accessing information with up to 80% of cancer patients using the Internet to gain knowledge about their disease 12 with Internet non-users tending to be older, lacking Internet access, have low health literacy or distrustful of Internetderived information. 16,17The Internet has also become desirable for patients who live remotely without regular access to healthcare services, as well as patients who are immobile and physically homebound. 18Online resources and information can help people with cancer develop a sense of understanding and feel empowered to tackle their illness and diagnosis as well as reduce their feelings of helplessness and uncertainty. 19A systematic review with metaanalysis was recently undertaken to explore the benefits of Internet-based psychological interventions in people with cancer, finding improvements in both physical and mental conditions, as well as overall quality of life. 8This is supported by a further systematic literature review of online resources, including discussion boards and general use of the Internet, which found preliminary, yet not conclusive, psychosocial wellbeing effects of online use relating to quality of life, stress, coping social support, and access to cancer treatment information. 19However, it was revealed many studies lacked a rigorous design methodology, calling for better evaluation of the effects of online resources. 19,20This highlights the challenges of high accessibility online content, that it is ultimately unregulated which requires the end user to have the ability to critique online content, identify and interpret reputable sources of information. 19is poses significant challenges in the provision of online mental health and wellbeing support as people with cancer have complex needs and varied levels of health literacy. 21The presence of nontraditional cancer therapies and non-scientific practices that can mislead patients is particularly concerning in vulnerable patients with numerous unmet needs, with the potential to cause anxiety, high risk behaviours, false beliefs, reduced compliance to appropriate cancer treatments and refusal to follow the advice of medical staff. 18spite concerns about the quality of information available online, raised by prior research, 22,23 there have been no known attempts to describe the specific attributes of information on the Internet directed to people with cancer, including breast cancer, looking to manage their mental health.A scoping review approach represents a methodology for analysing emerging evidence and an initial step in research development. 24As such, we conducted a scoping review to identify and assess mental health materials available to women living with or beyond breast cancer.

| Design protocol and registration
This scoping review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. 25The protocol was registered with The Open Science Framework and can be accessed here: https:// doi.org/10.17605/OSF.IO/582G7.

| Eligibility criteria and information sources
The inclusion criteria of this scoping review was formed by applying the 'Population-Concept-Context (PCC)' framework.This framework is recommended by JBI when developing search strategies for scoping reviews. 26The population can be described as women who have been diagnosed with breast cancer.The concept includes online support resources that address symptoms/side effects relating to emotional wellbeing and mental health for breast cancer patients.
The context refers to resources offered or delivered in English and from any country.Materials of any online format (i.e., factsheet, website, program, course, video, webinar, e-book, podcast) were included.Support resources for any stage of cancer (i.e., newly diagnosed or cancer survivors) and for the cancer patient's family members, friends, or spouse were included.Resources were excluded if they provided support specific to physical or somatic symptoms (e.g., diarrhoea, ulcers, nausea, neuropathy, and pain), if they were intended for medical professionals or as educational material for students.

| Search strategy and selection process
A Google search was performed using the advanced search settings feature (https://www.google.com/advanced_search). 27To help mitigate the risk of a personalised Google search algorithm and to enhance replicability, the Google search was conducted in Google's incognito mode.The search was limited to the first 15 Google pages. 28

| Data charting and statistics
Descriptive data were extracted and recorded into a pre-prepared template in Excel by authors A.W and M.I and cross checked according to the following characteristics: target audience, cancer type, treatment timepoint, type of resource, modality, symptoms/ side effects, citations/references, and provider/publisher.For quantitative data, normality was determined using a Kolomogorov Smirnov test.Statistical significance was identified using a one-way Analysis of Variance (ANOVA) (parametric data) or Kruskal Wallis (non-parametric data) where p < 0.05 was considered significant.All statistical analyses were performed using GraphPad Prism v10.

| Critical appraisal of evidence
The quality evaluation scoring tool (QUEST) was used to assess resources on the quality of health information provided.The QUEST is a quantitative tool containing a set of criteria to appraise authorship, attribution, conflicts of interest, currency, complementarity, and tone. 29QUEST has a maximum possible score of 28 with a higher score indicating higher quality (see Appendix A for the description of the QUEST criteria). 29For each eligible resource, the information was assessed according to the pre-defined criteria of QUEST by the two reviewers and given a rank from 0 to 28, followed by analysing the data per country and provider.

| Study selection
A total of 236 resources were identified from the initial search.After removing duplicates (n = 8), resources by title (n = 11) and excluding those outside of the inclusion criteria (n = 100), 117 resources satisfied the search (Figure 1).

| Characteristics of included studies
This scoping review yielded materials from four countries: Australia

| Resource quality
The quality of evidence-base of the resources was low with 92.31% of resources lacking references to previous research or sources of information, and 82% having no indication of authorship or username (Table 2).Information presented was unbiased in 83% of search items, with no date provided in 63% of the resources.The average QUEST score was 10.04 (highest possible score is 28), indicating low quality.When aggregated by source provider (Table 3), medical professionals and news cooperations scored highest, however it is important to note that n = 1.Non-parametric analysis (Kruskal-Wallis) revealed resources provided by hospitals and medical schools scored significantly lower compared to all other providers (see Figure S1 and Figure S2

| DISCUSSION
meaning early changes in mental health may be unresolved leading to an increased risk of serious mental illness.Self-management is an essential element in supportive cancer care to manage mental health and wellbeing symptoms 13 of survivorship within which evidence-based online resources could mitigate the risk of future mental illness.With the variability of information available online, patients are limited and not well equipped to best manage their transition to survivorship despite a call for more high-quality, person-centred resources, 31 that deliver sustainable results. 32ese findings reiterate the need to engage with patient partners/ advocates and consumers to co-design more evidence-based online support that are communicated in a manner in which people with varied health literacies can understand and implement. 33It is critical that health professionals and creators of health care related content work collaboratively, to create online initiatives and content, to ensure patients are accessing reputable online resources and evidence-based (or expert guided) self-care strategies. 15r findings identified several key elements that are currently lacking.Firstly, it is imperative that resources avoid generic advice and instead provide more tailored solutions that meet the unique needs of specific patient populations.Whilst there is some overlap between cancers and the challenges they pose to patients, breast cancer imposes unique experiences for women such as hormone replacement side effects 34 and body image changes, 35 and as such may benefit from more tailored resources with direct information on wellbeing strategies to address the psychosocial implications of breast cancer.The majority of resources targeted people undergoing active treatment, however mental distress is known to persist beyond active treatment. 4This supports the research that survivorship resources and services are lacking, despite a growing demand for online resources from survivors wanting to be empowered with knowledge and skills to manage their survivorship experience. 36ven the dynamic nature of cancer, its treatment and the occurrence/persistence of psychosocial concerns, this highlights the need to develop resources that are specifically designed to address the specific, and differing, needs faced across the entire cancer continuum; that is from diagnosis, through to survival or palliative care. 37milarly, there was a lack of resources for caregivers and supporters of women living with breast cancer, which is in contrast with the demand for information to alleviate caregivers' distress. 7,38It was however promising to see a large number of resources focused on wellbeing, not just psychological distress.This is consistent with the increased awareness of the importance of mental wellbeing support for patients. 10,39However, it was noticeable how few resources were sourced from government institutions despite the significant role and impact of governments in health promotion and wellbeing. 40 developing resources, it is important to consider the experience of the end-user including electronic literacy.Increasing evidence suggests that interactive multimedia (e.g.videos, animations) are more engaging and effective to overcome low health literacy. 21spite this, the majority of eligible resources identified in our search were static.Given the increasing reliance on the Internet based selfmanagement resources, it is likely that interactive web-based wellbeing programs are more feasible than previously appreciated. 12ere is increasing evidence that web-based group peer support interventions are cost effective and scalable, 41 this may be an avenue for future investment/investigation.However, in doing so, it is critical that these initiatives are approached with the expectations and preferences of consumers used to inform their design and implementation. 20

| Strengths and limitations
Our findings must be considered in light of the strengths and limitations of our approach.A key strength of this study is the purposeful approach to mimick the 'real world' setting, in particular using lay terminology and Google to capture what a patient would find when seeking support resources.This, when coupled with the use of a well-established assessment tool, QUEST, to assess the quality of Google search results meant we found a strong balance between reality and rigour.However, while QUEST is a rigorous tool to assess the quality of online resources, it cannot be ignored that the attributes included in QUEST may not be the same attributes that consumers use to determine the quality of online resources, which studies have shown include practicality, support group interactions and availability of advice. 12Moving forward, we must understand how patients engage and assess online resources to support their wellbeing, recognising that low health literacy may affect consumer search terms, navigation and accessibility of online content. 17It is also important to acknowledge that this review was conducted in English, thus restricting the retrieval of potentially useful evidence-based resources for linguistically diverse cancer patients.Additionally, the Google search string was not able to exceed 32 words, limiting the scope of the search.The search criteria were narrowed down to contain the most relevant terms for the review, however, this resulted in the exclusion of many other terms.Instead, it would be beneficial to conduct multiple structured searches instead of one for future scoping reviews.
Despite using Google's incognito mode, the results are likely to have been biased as most resources were sourced from Australia, which is the location where the search took place.Future research could open the search terms to mask the search location using a VPN or using Google (Global).While we conducted informal consultation with a small group of people affected by cancer to guide our search terms, future research may also benefit from adopting a more rigorous/formal consultation process with consumers to guide search terminology to ensure our approach accurately reflects the behaviours and tendencies of the lay community.
T A B L E 2 Score and percentage of the quantitative aspects of the QUEST evaluation tool.There are limited evidence-based resources available to breast cancer survivors and their caregivers to support wellbeing despite an evident need for more targeted support.Given the demand for online resources from individuals wanting to be empowered with knowledge and skills to manage their survivorship experience, it is strongly recommended that governments and cancer care organisations invest in reputable, high-quality online resources for breast cancer survivors.

| CLINICAL IMPLICATIONS
Despite being a common method for sourcing health-related information, women affected by breast cancer are unlikely to find trustworthy, evidence-based resources to support their mental health and wellbeing needs by independently conducting a Google search.The findings of this review highlight the need for leadership and investment in the health care sector to co-develop practical evidencebased strategies with health professionals to enable people living with or beyond breast cancer to manage and improve their mental wellbeing.Critically, these must be designed in collaboration with consumers and advocates with diverse backgrounds, literacies and experiences.
Patient advocate and co-author M.B was consulted with and contributed to the search terms for this study to which they endorsed.The search for online resources was conducted on the Google search engine using the advanced search settings limited to English only using the following search string: ([Malignancy OR tumour OR tumour OR cancer] AND [Wellbeing OR Wellness OR 'quality of life' OR stress OR depression OR anxiety OR distress OR 'fear of recurrence' OR 'survivor guilt' OR recovery OR 'mental health' OR psychological OR post-traumatic stress disorder (PTSD)] AND [advice OR help OR support OR manage OR resource OR cope OR program OR information OR education]).All search results were reviewed by the author A.W and excluded if eligibility criteria was not met.The results were converted into a PDF document to avoid changes in online content between identification and data extraction.
of the supplementary information for the stacked chart illustrating QUEST domain scores (mode) aggregated by resource provider).An example of a high quality resource included a website from 'Healthline' titled '8 Places for People with Breast Cancer to Turn for Mental Health Support' receiving a QUEST score of 27.The website was rated two out of two for authorship due to including the author's name and the name and qualification of a peer reviewer.Attribution and Attribution continued were awarded full points for listing the references to peer-reviewed scientific studies.The webpage was considered unbiased scoring the full two points for referencing external programs and non-affiliated services.The article was reviewed in 2022 receiving two out of two for Currency.Complementarity was scored the highest at 1 for supporting the patientphysician relationship.Lastly, Tone was awarded one out of two for minimal discussion of the limitations.See Table S1 File for the full list of resources.
-based resources using a Google search to support their mental health and wellbeing.The most significant finding of our scoping review was the lack of evidence-based support resources for women with breast cancer that appear on a Google search, with 95% reporting a QUEST score below 20 (indicating poor quality).
Abbreviation: PTSD, post traumatic stress disorder.evidence Descriptive statistics for QUEST scores aggregated by provider.Bold value is highlighted as it is the only value with statistical significance.
Abbreviation: NS, not significant.a versus all other resources.