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No specific quality criteria yet exist for question prompt lists (QPLs), so this study aims to develop a quality assessment tool to then use for an evaluation of online-available QPLs. An online search was conducted for German-language QPLs using different internet search engines and terms. A wide range of existing quality criteria for patient information was adapted to the field of QPLs to build an assessment tool and evaluate all identified QPLs by four independent raters. All new quality criteria were applicable to QPLs. The overall quality of 46 oncological QPLs was low, though the tool's subcategories were mostly fulfilled to over 80% by at least one QPL. For-profit organizations published lesser quality than medical organizations. The quality of breast- and prostate-cancer-specific QPLs was higher than that of general ones. High-quality QPLs could be created if more aspects were taken into account, but the available QPLs only focus on few quality aspects. The ambiguous results of effectiveness studies to date may be a result of vastly differing quality of the QPLs used for the interventions. The criteria provided in this study present a solid basis to assess the quality of QPLs. The creation of future QPLs as well as effectiveness studies should be more firmly based on quality criteria., (© 2023. The Author(s).)

Cancer patients need access to high-quality information, when making decisions about oral cancer drugs. The internet is often used as a source of information published by highly heterogeneous providers. The objective was to evaluate the quality of website providers supplying online information about oral cancer drugs. One hundred websites were analyzed using content-related and formal criteria, selected from three existing evaluation methods used for cancer websites, for medical information (defined by the German Agency for Quality in Medicine), and for the "fact box" tool. A web search by a patient was simulated to identify websites to evaluate. ANOVA was used to assess information provided by non-profit organizations (governmental and non-governmental), online newspapers, for-profit organizations, and private/unknown providers. Content-related quality differences were found between online newspapers and all other categories, with online newspapers ranking significantly lower than for-profit and non-profit websites. As for formal criteria, for-profit providers scored significantly lower than non-profit providers and online newspapers for the aspect of transparency. Internet information on oral cancer drugs published by non-profit organizations constitutes the best available web-based source of information for cancer patients. Health literacy and e-health literacy should be promoted in the public domain to allow patients to reliably apply web-based information. Certification should be required by law to ensure fulfillment of requirements for data reliability and transparency (authorship and funding) before health professionals recommend websites to cancer patients., (© 2020. The Author(s).)

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.

Understandable health information is essential for treatment adherence and improved health outcomes. For readability testing, several instruments analyze the complexity of sentence structures, e.g., Flesch-Reading Ease (FRE) or Vienna-Formula (WSTF). Moreover, the vocabulary is of high relevance for readers. The aim of this study is to investigate the agreement of sentence structure and vocabulary-based (SVM) instruments. A total of 52 freely available German patient information booklets on cancer were collected from the Internet. The mean understandability level L was computed for 51 booklets. The resulting values of FRE, WSTF, and SVM were assessed pairwise for agreement with Bland-Altman plots and two-sided, paired t tests. For the pairwise comparison, the mean L values are L FRE  = 6.81, L WSTF  = 7.39, L SVM  = 5.09. The sentence structure-based metrics gave significantly different scores (P < 0.001) for all assessed booklets, confirmed by the Bland-Altman analysis. The study findings suggest that vocabulary-based instruments cannot be interchanged with FRE/WSTF. However, both analytical aspects should be considered and checked by authors to linguistically refine texts with respect to the individual target group. Authors of health information can be supported by automated readability analysis. Health professionals can benefit by direct booklet comparisons allowing for time-effective selection of suitable booklets for patients.

According to the information-seeking behaviors of patients, booklets which can be downloaded from the Internet for free are an important source of information notably for patients with cancer. This study investigated whether information booklets for patients with cancer available at German websites are in accordance with the formal and content criteria of evidence-based information. We compared and compiled both content and formal criteria by matching different national and international standards for written patient information using a merged instrument. A catalog with a total of 16 items within 4 categories (quality of the publication, quality of information, quality of information representation, and transparency) was created. Patient information booklets for the most frequent tumor types were collected from the Internet. A total of 52 different patient booklets were downloaded and assessed. Overall, no booklet fulfilled all criteria. The quality of the publications was evaluated with an average value of 1.67 while the quality of the information had a mean value of 1.45, and the quality of information presentation had a similar rating (1.39). The transparency criteria were evaluated as lowest with an average of 1.07. In summary, German booklets for cancer patients have some shortcomings concerning formal and content criteria for evidence-based patient information. The applied requirement catalog is suitable for wide use and may help in quality assurance of health information. It may be used as part of an obligatory external evaluation, which could help improving the quality of health information.

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.

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.

An increasing number of patients and relatives use the Internet to get additional or initial information about their disease. The aim of the study was to reevaluate the Internet usage among German cancer patients. Using a standardized questionnaire, we did an anonymous survey on patients attending a series of lectures on complementary medicine in 2014. We received 255 questionnaires. Nearly 80 % of the participants stated that they used the Internet to read up information about health or medicine issues. There was no significant difference regarding gender, age, or status (patient, current treatment/former treatment; relatives). Most users use the Internet in order to get additional information after a consultation with a physician (82.2 %). Important qualities from the view of the patient are a trustable source (65.3 %), information from experts (59.6 %), and actual information (52.8 %). There is an increasing number of patients in Germany looking for information in the Internet mostly in the intention of getting additional information. Yet, as the quality of information is heterogeneous, false information may lead to distrust in the doctor or wrong decision-making. Accordingly, organizations working on improving quality of cancer care should engage in conveying comprehensive and actual information adapted to the needs of patients. Physicians should know trustful websites for referral of patients.