Internet use by cancer survivors: current use and future wishes

Abstract

Objective

The objective of this study was to evaluate the extent of internet access and use and patient characteristics associated with internet use. We also aimed to study when and at which sites cancer patients search for information, the self-reported effect on health care use, and patients’ wishes with respect to future internet possibilities.

Materials and methods

We drew a sample of 390 patients diagnosed with breast (n = 128), prostate (n = 96), or gynecological (n = 89) cancer or lymphoma (n = 77) in four different hospitals in the period 2002–2004, who were 65 years or younger at diagnosis. These patients were sent a questionnaire that contained 45 questions about demographics and three broad applications of internet use: content, communication, community.

Results

Of the 261 (75%) patients who responded, 60% used Internet by themselves, 9% via others, whereas 31% did not use the Internet. High education, young age, and high socio-economic status were all independently positively associated with internet use. Of the patients with complaints but pre-diagnosis, 41% searched the Internet for information about cancer daily to several times a week. After diagnosis, during treatment, and at follow-up, this was, respectively, 71%, 56%, and 4%. Although patients preferred to get reliable information from the Web site of their oncologist (88%), hospital (70%) or Dutch Cancer Society (76%), Web sites that are completely financed and created by pharmaceutical industries were mentioned most as source of information. Patients who used the Internet to find information about cancer felt themselves to be better informed about their disease (72%); only 3% thought that consulting the Internet increased the frequency of visiting their doctor, whereas 20% felt that information from the Internet influenced the treatment decision made by their doctor. Most patients who use the Internet would like to be able to access their own medical file (79%) or test results (81%) if possible.

Conclusion

Many cancer patients use the Internet to find reliable information about their disease and treatment. Patient information centers from hospitals should be strongly encouraged to improve disease and treatment information facilities on their hospital Web site, especially since most patients view their oncologist still as the most important source of information.