Understandability of Patient Information Booklets for Patients with Cancer.

The improvement of health literacy in general and the information of individual patient is a major concern of the German national cancer plan and similar initiatives in other western countries. The aim of our study was to assess the readability and understandability of information booklets for cancer patients available at German Web sites. A support vector machine (SVM) was used to discriminate between laymen- and expert-centric patient information booklets about nine most common tumor types. All booklets had to be available for free at the Internet. A total of 52 different patient booklets were downloaded and assessed. Overall, the assessment of all booklets showed that an understandability level L of 4.6 and therefore increased medical background knowledge is required to understand a random text selected from the sample. The assessed information booklets on cancer show very limited suitability for laymen. We were able to demonstrate that a medical background is necessary to understand the examined booklets. The current study highlights the need to create information material adjusted to the needs of laymen. Assessing understandability before publication, especially for laymen with low health literacy, could ensure the suitability and thus quality of the information material.

Utility of a Referral Letter to Improve Comprehensibility of Cancer Patients in Palliative Care: a Single-Center Study.

In spite of a referral letter as an important document for communicating between physicians, whether it could also be useful as a source of information for patients has not yet established. We included cancer patients in palliative care setting, all of whom completed a standardized questionnaire regarding their opinion concerning the utility of a referral letter as a source of information and its requirements to achieve a better understanding. Completed questionnaires were received from 50 cancer patients. Ninety-four percent of participants agreed that a referral letter could be of great importance for procuring medical information to them. There was only minor divergence among the participants respecting age, gender, or education. Particular requirements were diagnosis, treatment plan, prognosis, list of drugs, and contact data of involved physicians. Additional important topics were laboratory values, alternatives to current therapy, side effects and supportive therapy, and advices regarding lifestyle and naturopathy. The majority of patients also concluded to accept technical terms in doctor's letters if a glossary supported their comprehension. The majority of patients prefer a concise description of medical information in a referral letter. This form of a letter would boost patients' involvement and help them transfer medical information to other therapists or relatives.

Information Deficits and Second Opinion Seeking - A Survey on Cancer Patients.

OBJECTIVE: To learn more about cancer patients' motivation for seeking a second opinion. METHODS: Participants filled in a standardized questionnaire. RESULTS: Among 106 patients, 34% had looked for a second opinion, 81% wanted to check the accuracy of their treatment, and 49% needed to better understand the diagnosis. Low understanding of information was associated with looking for a second opinion, and 79% felt assured after a second opinion. CONCLUSIONS: 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.

What cancer patients find in the internet: the visibility of evidence-based patient information - analysis of information on German websites.

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.