Christian Keinki

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.

The Quality of Patient Information Booklets for Cancer Patients—an Evaluation of Free Accessible Material in German Language

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.

Potential Interactions of Medication Prescribed in Discharge Letters from a Clinic for Hematology and Oncology

Background: As there are few data worldwide concerning the frequency and relevance of interactions of prescribed drugs in hemato-oncology, we analyzed the medication prescribed to patients at a clinic within a comprehensive cancer center. Methods: Details of the medication prescribed for all patients in 2011 were extracted from their discharge letters. All potential medication combinations were assess with respect to the risk of interaction using 3 specialized websites. Results: The files of 202 patients receiving 275 drugs were extracted; 4,303 drug combinations were created. Overall, 88% of these combinations were found to be harmless with an interaction value (IV) of 1. However 10% showed potential risk of probable interaction (IV 2 + 3). 47% of the patients had at least 1 drug combination with a risk of interaction. A maximum of 29 drugs with 15 probable and possible interactions were found. Conclusion: Awareness for this topic should be raised in physicians and patients. An important step for avoiding risks of interactions is a systematic check of all drugs prescribed. There is urgent need for reliable data on clinically relevant interactions and for a better network in which physicians and pharmacists can exchange data about relevant interactions.

EHealth literacy in patients with cancer and their usage of web-based information

ObjectiveOur aim was to learn more about the association between the sources of information cancer patients and caregivers use and their eHealth literacy.MethodsWe distributed a standardized questionnaire among participants of a lecture program on complementary and alternative medicine (CAM).ResultsAmong 182 attendants, the Internet was the third most important source of information (57%), preceded by the oncologist (67%) and print media (61%). Print media was associated with female participants and web-based information with younger ones. Regarding eHealth literacy, more than half (58.5%) had an above average eHEALS score. Nevertheless, the biggest concern was not being able to differentiate between reliable and not reliable websites. The correlation between a high eHealth literacy and regular search of web-based cancer information was significant (p < 0.001).ConclusionThe number of people using the Internet as a source of cancer information has increased over the past years and will rise in the future. However, only half of the population has the knowledge and capability to access and differentiate the massive web-based data. Improving eHealth literacy within the public will expand the knowledge of regular patients and help them become a well-informed and equal partner in decision making.

Computer-Based Readability Testing of Information Booklets for German Cancer Patients

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 LFRE = 6.81, LWSTF = 7.39, LSVM = 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.

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.

Communication before Cancer Surgery - the Perspective of Patients with Gastrointestinal Cancer

We contacted German self-help groups for patients with gastrointestinal cancer and invited them to conduct a pilot survey among their members. 3 groups consented to collaborate: The Working Group of Pancreatectomized Patients and 2 groups for post-gastrectomy patients. All 3 groups had fundamental ideas concerning the questions to be included in the survey. As a consequence, we decided against using a validated questionnaire. Starting with a questionnaire on patient information needs developed by us for quick surveys during patient information events [15], we discussed and agreed on the main topics for the new questionnaire. A pilot version was developed and tested by 3 members of the first group of gastrectomized patients and by 2 members of the Pancreatectomized Patient Group. In cooperation with the leaders of the collaborating groups, we revised 4 of the questions due to concerns that certain words may be difficult for some patients to understand. Finally, the questionnaire was sent to all participating groups. The Working Group of Pancreatectomized Patients passed it on to participants of a national group meeting in Berlin in 2015 as a print version and collected the answers anonymously at the end of the meeting. Furthermore, it was put on their website from June 2015 to March 2016. The questionnaire could be downloaded and sent either to the bureau of the selfhelp group or to our working group. The second group of post-gastrectomy patients distributed the questionnaire during a group meeting in October 2015, collected the anonymous answers, and sent all questionnaires to our working group. The questionnaire consists of 4 parts: i) Demographic data including sex, age, education, marital status, time and type of diagnosis, and type of treatment (7 questions); ii) Data pertaining to the preoperative dialogue, including who conducted it, how long did it last, was a relative invited to be present, details of the surgery, and the satisfaction with the first dialogue (13 questions); iii) Data regarding second opinions and their influence on treatment decisions and the physician-patient relationship (8 questions); and iv) Data on physician-patient communication about postoperative effects and follow-up (16 questions). We used closed questions, providing a list of possible answers (for instance: ‘Did you get a second opinion?’ Options: ‘Yes’; ‘No’; ‘I am not sure’; ‘No answer’). If there were several possible answers, we listed them, giving the opportunity to mark all that apply. In cases where a rating by the participants was necessary, we pre-specified answers using 5-point Likert scales (for example: ‘How satisfied are you with the information about the course of your disease?’ Options: 1 = ‘very dissatisfied’ to 5 = ‘very satisfied’). Introduction