Background: The internet is an easy and always accessible source of information for cancer patients. The aim of our study was to evaluate the information provided on German websites. Material and Methods: We developed an instrument based on criteria for patient information from the German Network for Evidence-based Medicine, the Agency for Quality in Medicine, HONcode, DISCERN, and the afgis. We simulated a patient's search and derived the websites for evaluation. We analyzed the visibility of each website and evaluated the websites using the developed instrument. Results: We analyzed 77 websites. The highest visibility index was shown by 4 profit websites. Websites from professional societies and self-help groups have low rankings. Concerning quality, websites from non-profit providers and self-help groups are on top. Websites with a profit interest have the lowest average score. Conclusions: A discrepancy exists between the visibility and the quality of the analyzed websites. With the internet becoming an important source of information on cancer treatments for patients, this may lead to false information and wrong decisions. We provide a list of suggestions as to how this risk may be reduced by complementary information from the physician and from trustworthy websites.
The aim of our study was to investigate the relationship between information needs and cancer patients' perceptions of the impact of the disease, self-efficacy, and locus of control. Using a standardized questionnaire, we obtained data from patients who attended a series of lectures. The questionnaire included questions on their information needs, sources of information, satisfaction with information, and short questionnaires on self-efficacy, perception of the disease, and locus of control of reinforcement. Data was obtained from 185 patients. Our results showed that the sources of information that were most often used were physicians (84 %), print media (68 %), and the Internet (59 %); online fora (7.5 %), non-medical practitioners (9.7 %), and telephone-based counseling (8.6 %) were only used by a minority. Patients with a high perception of their own control over the disease more often used any source of information available to them and were more often interested in acquiring additional information. Higher self-efficacy was significantly associated with the need for information on all topics. Patients with a higher external locus of control significantly more often used sources of information and had significantly more need for additional information. By contrast, there were no associations with an internal locus of control. Neither external nor internal locus of control showed any associations with satisfaction with information. Information needs seem to be higher in patients with a high external locus of control and low self-efficacy. Physicians, other professionals, and institutions that provide information may take these relationships into consideration for tailoring their services to patients.
Patients' and relatives' desire for an individualized, comprehensive counseling with high expertise provided by one person points to the limits of resources of the health system. The importance of additional information material will rise accordingly. This material should be tailored to the needs of diverse patient groups.
Seeking a second opinion may help cancer patients in coping with the disease. As data on benefits are missing, other strategies, such as qualified first opinion and a sound physician-patient communication, may be advisable.
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