JMIR Publications

ABSTRACT

Background:

see Objective

Objective:

Given the major internet use for health communication, the objective of this study was to determine the differences and similarities between survivors in population-based samples (POP) with survivors participating in online cancer communities (OCC) in how they use the internet in relation to their illness.

Methods:

We drew in 2017 a sample of 539 POP-patients and 531 OCC-patients. The POP-patients were sent a paper-based questionnaire and the OCC-patients the same questionnaire online. In the questionnaire we asked about demographics and four functions of internet use: content, communication, community and e-health.

Results:

The response of POP-internet users was 45% and the OCC-group 40%. The OCC-group had a significant higher education level (P<.001), were younger (P<.001) and more often employed (P<.001), attached greater importance to internet (80% vs. 54%, P< .001) and fellow patients (50% vs. 26%, P< .001). The OCC-group reported also significantly higher on knowledge of condition and treatment, and significantly lower on being able to manage physical impact, social impact and healthy lifestyle.

Conclusions:

We conclude that patients who actively participate in an online cancer community are not representative of patients with cancer in general. There are significant differences in personal characteristics, in internet use during their treatment journey, in sense of control over their illness and in participation wishes. Patients and health care professionals should actively refer to internet for information, that supports shared decision-making. Later in the journey, an online community provides patients with a platform for active participation in their treatment. For research it is important to take into account the bias in OCC-groups.