A Short Review of Psychological Distress in Breast Cancer Survivorship and a Role for Social Media Technology (Twitter)

G. M. Lindsay^1*, Tayyib, N. A.¹, Lamiaa, A. A.^1,2, Grobbelaar, L.³, Saub, C. R.³ & Alsolami, F. J.¹

¹College of Nursing, Umm Al-Qura University, Makkah, Saudi Arabia
²Ain Shams University, Faculty of Nursing, Egypt
³Al Hada Armed Forces Hospital, Taif Region, Saudi Arabia

*Correspondence to: Dr. G. M. Lindsay, College of Nursing, Umm Al-Qura University, Makkah, Saudi Arabia.

Copyright © 2019 Dr. G. M. Lindsay, et al.. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Introduction
Cancer affects millions of people worldwide and is a significant cause of mortality and morbidity [1]. The breast is a common site for cancer in women leading to clinical manifestations where physical and psycho-social problems are prevalent [2,3]. Even after medical and surgical treatments psychological disturbances have been found to persist. In the long term these can include anxiety, uneasiness, mourning, helplessness, fatigue, impairment of concentration, sleep disorders, mental and cognitive reservation, sexual dysfunction, infertility, psychological distress and psychiatric disorders [2]. Psycho-social problems are often a precursor for the emergence of more serious psychological troubles and severely impaired quality of life and relationships. The prevalence of psychological disorders in patients with cancer ranges from 29% to 47% [4]. In the year following a diagnosis and treatment for breast cancer, a survey identified that approximately 30% of individuals showed psychological impairment mainly due to anxiety and depression [5,6]. Persistent psychological issues continued with up to 15% of survivors experiencing symptoms of depression for up to five years after the index event [6]. Unresolved healing persists with this destructive and life-threatening illness despite radical improvements in treatments and reconstructive procedures, which go a long way to improving survival and the sense of whole self.

Interventions to Improve Psychological Distress
Xia et al. [7] conducted a meta-analysis of fifteen randomized controlled trials evaluating the impact of psycho-social interventions in cancer survivors including breast cancer. These analyses involved data on 2041 subjects between 1989 and 2009 and survival outcomes at one, two, four and six years following intervention or control were reported. A significant survival difference was reported at the two years followup. Furthermore, subgroup analysis of seven RCTs exceeding 30 hours of psycho-social treatment revealed a decrease in all relative risks and yielded a significant survival benefit in the first and second years following intervention. Therefore early to midterm survival benefits were achieved with longer input interventions suggesting more research. A further updated meta-analysis of the topic was conducted by Fu et al. [8] two years later. The results supported the analysis and conclusions reported earlier by Xia et al. [7].

They both concluded that psychological intervention could achieve benefits of up to two years, but thereafter that its effectiveness diminished. It may be that the psychological intervention has becoming less effective or less ‘fit for purpose’ with survival for two or more years beyond the initial diagnosis?

Appropriate information about factors affecting your health and the support to maintain health options rely on getting meaningful and correct support in a timely manner [9]. The top provider of health information for patients with breast cancer is the medical and healthcare team [10]. However, after consultation with a healthcare professional, cancer survivors report that the internet is their most important source of cancer information [10,11]. Online support groups have also been shown to fill gaps in meeting the needs of some breast cancer survivors [12].

Effect of Social Media in Health and Wellbeing Support
A review of social media sites identified Twitter (see appendix) as the most popular medium used by cancer patients. As a proportion of the main platforms available 26.5% used Twitter compared to 16.6% for general news outlets, 14.9% for forums with the remaining users spread in small percentages across ten different sites. This review was based on over 700 million interactions on social media. A ‘patient-reported outcomes’ survey found Twitter Social Media to be an effective tool for the education and support of breast cancer patients [13]. Breast cancer patients used Twitter as a non-medical forum to share their experiences with random fellow users including those with a similar diagnosis [14].

One popular social media application is Twitter. On Twitter, individuals and organizations can post (tweet) their thoughts, ideas, reactions to events. Twitter users can follow others to receive a real-time feed of the users’ respective tweets. Users can also pass messages to their followers (retweet) as well as to other named users, which puts the tweet into an additional subscription feed [15]. Users should be aware that this process has the potential for insecure data sharing.

People share some of their most significant experiences; some are their most positive experiences while others are their most harrowing. In the latter case, it can be difficult to have person-to-person conversations in topic areas that may cause additional distress. An alternative option is accessing the internet, as a safe solitary place, to seek support and guidance. The Web can provide the opportunity to search for symptoms, prognosis and possible treatments while simultaneously sharing a difficult health ‘journey’ without the need for ‘face to face’ contact and the option to disengage and ‘walk away’. These conversations can bring clarity and solace to the emotional burden of patients and families. In addition, these can provide insights that and can enrich healthcare professionals and other patients understanding of what the priorities might be, possible concerns, knowledge gaps and support needs.

A note of caution in this somewhat ‘virtual world of health conversations’, where the dialogue is based on ‘counsel of the great unknown’: individuals may not be accustomed to the onslaught of unforeseen and alarming comments which can cause offense or confusion as opinion and advice varies. There is anecdotal evidence to suggest that social media platforms such as Twitter can magnify levels of anxiety, depression and insecurity in individuals prone to these dispositions, e.g. [16]. As a health professional we should remind patients of this unchartered area of advice, but also as a means of establishing a social network. Users could make some attempt to limit unwelcome responses by adopting principles of respectful communication [17] in the construction of their ‘tweet’ and inviting responses from those of a similar mindset.

Reality in Patient Concerns
In addition to creating connectivity for social communities, of which Twitter is an example, developments in AI enable the information content of unstructured input data such as conversations, requests, topic searches and more to be analyzed in depth. This process can provide further rich data on patients’ needs as they live with breast cancer or other diagnosed illnesses.

Patient satisfaction and concerns with healthcare are important dimensions in modern, high quality healthcare provision. Exploring concerns is an opportunity for physicians to ensure understanding of and adherence to the care plan [18]. Unvoiced concerns are associated with unresolved health issues and poor doctor-patient relationships. Assessing patient concerns is associated with positive outcomes [19].

An analysis of social media data spanning one year to September 2019 and designed to track information on oncology subsets of breast cancer and other specific areas [9] identified ‘Support’, ‘Care’ and ‘Research’ as key topics of interest in ‘tweet’ conversations. In what might be considered a form of ‘biased data’ (human predilection to complain), frustrations towards oncology teams were aired as was confusion in diagnosis and treatment plans. Also information for patients and families were noted by many to be from online sources. Reliance on these sources introduces questions of accuracy, interpretation, individualization and the relevance of the information and the additional problems posed for patients. The mindset of the ‘twitter’ composer is not necessarily known and many responses can be reactions to unforeseen comments from others. Their context or perspective does not directly feed into the narratives articulated in the threads of ‘tweets’ thereby limiting the interpretation of the outputs. The analysis of ‘tweets’ is becoming a more sophisticated science as AI capability and capacity is able to learn from these ‘Big Data’ and from that learning be able to interpret meaning.

Validation of Information Derived Using AI
Text analysis can be undertaken using complex AI machine learning algorithms [20] to extract themes, concepts, pertinent information from the multitude of unstructured conversations communicated in the complexity of ‘tweet’ interchanges. Such information would benefit from the inclusion of individuals health care goals, the strategies they propose to adopt to achieve their goals, the specific health concern and whether or not they are knowledgeable about the circumstances of this concern, and the assumptions they make in its management. Guidance in these matters can be found within the qualitative research paradigms. Therein lies established inductive methodologies for the analysis and interpretation of narratives, verbal accounts and expressions of feelings to name a few data types that are likely to be found in the chat-rooms facilitated by Twitter and other social media platforms. Inclusion of these data in the AI methodology could strengthen the integrity of the analytical process and ‘truthfulness’ of the data generated, and furthermore, be incorporated into the overall machine learning algorithms for conversational analysis.

Developments in the analysis of ‘Big Data’ can be used by researchers and health care analysts to provide greater understanding of the issues for the population in relation to health care issues, concerns as well as benefits and therefore contribute to future guidance in the health care sector.

Conclusions and Recommendations
Meta analyses of research studies clearly identify that ongoing psychological stress following diagnosis and treatment has recognized adverse outcome for patients with breast cancer. Evidence demonstrates that psychological interventions to manage stress, alleviate anxiety and treat depression have a significant positive effect on survival. However, this effect is noted to become statistically not significant approximately two years after initial treatment for reasons that are unclear from the studies undertaken because most involve only short term follow-ups. Social support networks have been shown to be an important feature of successful psycho-social interventions and new technologies in the form of social media platforms have a role to play in nurturing social networks/communities in individuals sharing similar health challenges. Further research should be focused on the benefits of these platforms and improved guidance on their effective use. In this paper, the focus was Twitter because it has been reported as a frequently used communication vehicle in the general population and for those with healthcare issues.

Appendix
Twitter [21] is a social networking service initially launched in July 2006 and developed by Jack Dorsey, Evan Williams, Noah Glass and Biz Stone. The service allows registered users to post and interact with messages, or “tweets”, posted by other users. Unregistered users can view tweets but not respond to them. Twitter does not censor tweets other than to block items containing profanities. The topic of a tweet is normally prefaced by a hash sign (#), or hashtag, but these can also be present within the text of a tweet. The Twitter platform uses the hashtag to identify and categorize the substance of that tweet. Clicking on a hashtag allows users to access the contents of other tweets with that hashtag. Users access the service online at https:// twitter.com or using SMS or the Twitter mobile “app” which is free and available at https://twitter.com or from various other outlets.

Tweets themselves were originally restricted to 140 characters, but this restriction was raised to 280 characters during November 2017 in response to an increasing proportion of tweets (9% in November 2017) using all 140 characters. However, tweets in Mandarin, Japanese and Korean remain restricted to 140 characters due to the compactness of information transfer using these languages. Recently Twitter users can attach up to four photographs or a video to a tweet, but at the loss of available characters e.g. 22 characters per photograph. As of February 2019, Twitter had approximately 321M active users and was recognized as the leading social media platform for conversations involving cancer with approximately 26.5% of all such discussions taking place on Twitter [9]. Table 1 provides summary advantages and drawbacks in using the Twitter Social Media platform.

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