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

Mies C van Eenbergen; Lonneke V van de Poll-Franse; Peter Heine; Floortje Mols

doi:10.2196/cancer.7312

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

JMIR Cancer. 2017 Sep 28;3(2):e15. doi: 10.2196/cancer.7312.

Authors

Mies C van Eenbergen^#¹, Lonneke V van de Poll-Franse^{1

2}, Peter Heine³, Floortje Mols⁴

Affiliations

¹ Department of Research, Netherlands Comprehensive Cancer Organisation, Utrecht, Netherlands.
² Division of Psychosocial Research & Epidemiology, The Netherlands Cancer Institute, Amsterdam, Netherlands.
³ Stichting kanker.nl, Amsterdam, Netherlands.
⁴ Department of Medical and Clinical Psychology, Tilburg University, Tilburg, Netherlands.

^# Contributed equally.

Abstract

Background: In recent years, the question of how patients' participating in online communities affects various patient reported outcomes (PROs) has been investigated in several ways.

Objectives: This 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.

Methods: A 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.

Results: The 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.

Conclusions: The 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.

Keywords: Internet; cancer; patient reported outcomes; support groups; survivors.

©Mies C van Eenbergen, Lonneke V van de Poll-Franse, Peter Heine, Floortje Mols. Originally published in JMIR Cancer (http://cancer.jmir.org), 28.09.2017.