The Impact of Participation in Online Cancer Communities on Patient Reported Outcomes: Systematic Review

Abstract

BackgroundIn recent years, the question of how patients’ participating in online communities affects various patient reported outcomes (PROs) has been investigated in several ways.ObjectivesThis study aimed to systematically review all relevant literature identified using key search terms, with regard to, first, changes in PROs for cancer patients who participate in online communities and, second, the characteristics of patients who report such effects.MethodsA computerized search of the literature via PubMed (MEDLINE), PsycINFO (5 and 4 stars), Cochrane Central Register of Controlled Trials, and ScienceDirect was performed. Last search was conducted in June 2017. Studies with the following terms were included: (cancer patient) and (support group or health communities) and (online or Internet). A total of 21 studies were included and independently assessed by 2 investigators using an 11-item quality checklist.ResultsThe methodological quality of the selected studies varied: 12 were of high quality, eight were of adequate quality, and only one was of low quality. Most of the respondents were women (about 80%), most with breast cancer; their mean age was 50 years. The patients who were active in online support groups were mostly younger and more highly educated than the nonusers. The investigated PROs included general well-being (ie, mood and health), anxiety, depression, quality of life, posttraumatic growth, and cancer-related concerns. Only marginal effects—that is, PRO improvements—were found; in most cases they were insignificant, and in some cases they were contradictory.ConclusionsThe main shortcoming of this kind of study is the lack of methodological instruments for reliable measurements. Furthermore, some patients who participate in online communities or interact with peers via Internet do not expect to measure changes in their PROs. If cancer survivors want to meet other survivors and share information or get support, online communities can be a trustworthy and reliable platform to facilitate opportunities or possibilities to make this happen.

Changes in internet use and wishes of cancer survivors: A comparison between 2005 and 2017

“…Communities of patients with cancer provide mutual emotional and informational support, which can positively influence quality of life. 7,8 Ziebland and Wyke concluded that this community opportunity was the greatest internet-driven change: "Patients learning to tell the story and visualizing disease." 23 Based on wishes reported in the 2005 study, we hypothesized that approximately 20% of patients with cancer wished to participate in communities.…”

“…This currently is referred to as e-health. 7,8 Given these major changes in internet use, both in general and for health communication in particular, an important question is to what extent use of the internet by cancer survivors and their wishes for online modalities have changed in recent years. The current study has addressed this question by repeating and extending a study by van de Poll-Franse and van Eenbergen 3 published in 2005, which presented the future wishes regarding the internet of patients with cancer.…”

Secret groups and open forums: Defining online support communities from the perspective of people affected by cancer

“…18,19 The evidence base regarding the effectiveness of online cancer support is modest but positive. 20 Online community use has been reported as a positive experience amongst small samples of cancer survivors in controlled community settings. 21,22 Online community participation has been linked to increased positive coping.…”

Assessing How Health Information Needs of Individuals With Colorectal Cancer Are Met Across the Care Continuum: an International Cross-Sectional Survey

“…Indeed, in a prior qualitative study of experiences of individuals with yCRC, participants shared that they often conducted their own independent searches on the Internet for health information on CRC, particularly on topics such as sexual activity, reproductive health, mental health, and work/employment which may not be routinely discussed during healthcare appointments, as well as connect with other patients with CRC in online communities. [20] However, although the Internet has been shown to be bene cial source of information for cancer patients, [20][21][22][23][24] it may also lead to misinformation. [25,26] In 2004, Al-Bahrani & Plusa conducted assessed the quality of websites providing information to individuals with CRC and found that it can be di cult to distinguish accurate, clear information.…”