Cancer Patients Numeracy and Preferences for Information Presentation-a Survey Among German Cancer Patients.

Numeracy is highly relevant for therapy safety and effective self-management. Worse numeracy leads to poor health outcome. Most medical information is expressed in numbers. Considering the complexity of decisions, more information on the patient's ability to understand information is needed. We used a standardized questionnaire. Content was self-perception of numeracy, preferences regarding decision-making with respect to medical issues, and preferred content of information from four possible answers on side effect of cancer therapies (insomnia) within two scenarios. Overall, 301 participants answered the questionnaire. Presentation of facts in numbers was rated as helpful or very helpful (59.4%). Higher numeracy was associated with higher appreciation for presentation in numbers (p = 0.002). Although participants indicated presentation of facts in numbers as helpful in general, the favored answer in two concrete scenarios was verbal and descriptive instead of numerical. Numeracy is highly relevant for therapy safety and effective self-management. Health professionals need more knowledge about patient's ability and preferences with respect to presentation of health information. An individualized patient communication might be the best strategy to discuss treatment plans. We need to understand in which situations patients benefit from numerical presentation and how managing numerical data might influence decision processes.

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.

[Survey on information needs of cancer patients and their relatives in Germany]. / Der Informationsbedarf von Patienten mit Krebserkrankungen in Deutschland - eine Befragung von Patienten und Angehörigen.

INTRODUCTION: Cancer patients generally have a great need for disease-related information. They prefer to be informed personally by the attending doctor. Yet, they also use other sources, mostly from medical laypersons or public media. The goal of our survey was to obtain insight into information patients get and their requirements regarding information. METHODS AND PARTICIPANTS: Using a standardized questionnaire, we conducted a survey on 226 patients and 32 relatives, who attended meetings providing information for cancer patients. RESULTS: Patients were generally content or highly content with the information they got. The direct consultation with the doctor is the most important source of information especially for older patients. Information by other patients and self-help groups rank second, followed by internet and online chats, which both are of minor importance for patients older than 60 years. From the patients' point of view, sources of information should be individualized and comprehensive, provided by experts and allowing for questions. Patients prefer one constant person for communication. Remarkably, empathic communication was not rated as important. Age and gender are not associated with these preferences for these characteristics of sources of information. DISCUSSION: 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.