Adherence to interdisciplinary tumor board recommendations as an expression of quality-assured patient care: results of a bicentric German analysis.

PURPOSE: Interdisciplinary tumor boards (ITBs) represent a central part of standard cancer care defining a guidelines-guided treatment plan adapted to the patient's capabilities, comorbidities and wishes in a multi-professional team. The implementation rate of ITB recommendations can be monitored by structured adherence analyses. But (inter)national definitions how to measure the level of implementation are missing. Here, we present results of 4 years of ITB adherence analyses in a bicentric German Comprehensive Cancer Center (CCC). METHODS: Between 2018 and 2021, for at least 1 month, the implementation rate of recommendations of 8 different ITBs of 2 CCC sites was evaluated manually according to harmonized criteria between both sites regarding the degree of implementation of ITB's recommendations. RESULTS: In total, 1104 cases were analyzed (65% male, 35% female). Mean distance from patient's home to the CCC was 57 km (range 0.8-560.6 km). For 949 cases (86%) with known follow-up, the adherence rate was 91.9% (95% CI 0.9; 0.935). In 8.1%, ITB decisions were not implemented due to medical reasons (45.4%), patient's wish (35.1%) and unknown reasons (19.5%). Logistic regression revealed neither age (OR = 0.998, p = 0.90), nor gender (OR = 0.98, p = 0.92) or the distance from patient's home to the CCC (OR = 1.001, p = 0.54) were significantly associated with ITB adherence. CONCLUSION: ITB adherences analyses can serve as a quality management tool to monitor the implementation rate of ITB recommendations and to stay in contact with practitioners, other hospitals and state cancer registries to share data and resources in accordance with data protection requirements for continuously improvement of quality management and patient care.

Population-Based Clinical Cancer Registration in Germany.

INTRODUCTION: In 2013, a new federal law obligated all German federal states to collect additional clinical data in population-based cancer registries as an active tool for monitoring and improving the quality of cancer care, increasing transparency and promoting health research. Now, 10 years later, the current status of the expanded cancer registration is presented, including current figures on cancer in Germany. METHODS: Reporting of cancer is mandatory for physicians, and about 5 to 10 reports from different healthcare providers are expected for each case. A uniform national dataset of about 130 items is used, and reports are usually sent electronically to the registry. We used the most recent data available from cancer registries up to the year of diagnosis in 2019. We calculated incidence rates and 5-year relative survival (5YRS) for common cancers. Data on clinical outcomes and benchmarking based on quality indicators (QIs) from guidelines were provided by the Cancer Registry Schleswig-Holstein (CR SH). RESULTS: All federal state cancer registries met most of the previously defined national eligibility criteria. Approximately 505,000 cancer cases were registered in 2019, with breast, prostate, colorectal and lung cancer being the most common cancers. The age-standardised cancer incidence has slightly decreased during the last decade. and spatial heterogeneity can be observed within Germany. 5YRS for all cancers was 67% and 63% for women and men, respectively. Therapy data for rectal cancer in 2019-2021 from the CR SH are shown as an example: 69% of the registered patients underwent surgery, mostly with curative intent (84%) and tumour-free resection (91%). Radiotherapy was given to 33% of the patients, and chemotherapy was given to 40%. Three selected QIs showed differences between involved healthcare providers. DISCUSSION: The implementation of population-based clinical cancer registration can be considered a success. Comprehensive recording of diagnosis, treatment and disease progression and the use of registry data for quality assurance, benchmarking and feedback have been implemented.

[Further Development and Interoperability in Oncological Care Structures, Quality Control and Research]. / Weiterentwicklung und Vernetzung der onkologischen Versorgungsstrukturen, der Qualitätssicherung und der Forschung.

How can we improve the interoperability of medical guidelines and the implementation and measurement of outcomes in medical health care for cancer patients as well as for care providers? This is the aim of the working group "Quality and Cross-linking". The following publication gives an overview of the targets reached in the development of guidelines together with quality indicators and documentation in cancer registries.

Record Linkage in Clinical Cancer Registration: Experiences and Findings from Lower Saxony.

In cancer registries, record linkage procedures are used to link records of the same patient from different health care providers. In the Clinical Cancer Registry of Lower Saxony, a multi-level combination of exact assignment using the statutory health insurance number and a probabilistic procedure with control numbers and address data is applied. The procedure implemented in the register application assigns the incoming messages in this way as far as possible automatically. The aim of the observation carried out was to check the efficiency of the match variables and threshold values used, above which manual assignment is required. Weak points were identified and approaches to solutions were developed.

Use and importance of different information sources among patients with rare diseases and their relatives over time: a qualitative study.

BACKGROUND: Finding reliable information on one of more than 7000 rare diseases is a major challenge for those affected. Since rare diseases are defined only by the prevalence criterion, a multitude of heterogeneous diseases are included. Common to all, however, are difficulties regarding information access. Even though various quantitative studies have analyzed the use of different information sources for specific rare diseases, little is known about the use of information sources for different rare diseases, how users rate these information sources based on their experiences, and how the use and importance of these information sources change over time. METHODS: Fifty-five patients with a variety of rare diseases and 13 close relatives participated in qualitative interviews. For these interviews, a semi-structured guideline was developed, piloted, and revised. Data analysis involved a qualitative content analysis developed by Philipp Mayring. RESULTS: The participants considered internet as the most important and widespread information source, especially for early information. Although patients have difficulty dealing with information obtained online, they consider online searching a quick and practical option to gather information. During the course of the disease, personal contact partners, especially self-help associations and specialized doctors, become more important. This is also because information provided online is sometimes insufficiently detailed to answer their information needs, which can be complemented by information from doctors and self-help. CONCLUSIONS: People rarely use just one type of source, but rather refer to different sources and informants. The source used depends on the type of information sought as well as other person-related factors such as preexisting knowledge and the disease stage. To improve people's information searching and connect them with medical specialists in rare diseases, a central information portal on rare diseases might be a suitable access point to provide free and quality assured information for patients, caregivers, and physicians. This would allow not only patients but also doctors to find quality assured information on symptoms and therapies as well as patient associations and specialized doctors.

Metadata Correction: Conceptualization and Implementation of the Central Information Portal on Rare Diseases: Protocol for a Qualitative Study.

[This corrects the article DOI: 10.2196/resprot.7425.].

Conceptualization and Implementation of the Central Information Portal on Rare Diseases: Protocol for a Qualitative Study.

BACKGROUND: Recently, public and political interest has focused on people living with rare diseases and their health concerns. Due to the large number of different types of rare diseases and the sizable number of patients, taking action to improve the life of those affected is gaining importance. In 2013, the federal government of Germany adopted a national action plan for rare diseases, including the call to establish a central information portal on rare diseases (Zentrales Informationsportal über seltene Erkrankungen, ZIPSE). OBJECTIVE: The objective of this study, therefore, was to conduct scientific research on how such a portal must be designed to meet the needs of patients, their families, and medical professionals, and to provide high-quality information for information seekers. METHODS: We chose a 3-step procedure to develop a needs-based prototype of a central information portal. In the first step, we determined the information needs of patients with rare diseases, their relatives, and health care professionals by means of qualitative interviews and their content-analytical evaluation. On the basis of this, we developed the basic structure of the portal. In the second step, we identified quality criteria for websites on rare diseases to ensure that the information linked with ZIPSE meets the quality demands. Therefore, we gathered existing criteria catalogs and discussed them in an expert workshop. In the third step, we implemented and tested the developed prototypical information portal. RESULTS: A portal page was configured and made accessible on the Web. The structure of ZIPSE was based on the findings from 108 qualitative interviews with patients, their relatives, and health care professionals, through which numerous information needs were identified. We placed particularly important areas of information, such as symptoms, therapy, research, and advisory services, on the start page. Moreover, we defined 13 quality criteria, referring to factors such as author information, creation date, and privacy, enabling links with high-quality information. Moreover, 19 users tested all the developed routines based on usability and comprehensibility. Subsequently, we improved the visual presentation of search results and other important search functions. CONCLUSIONS: The implemented information portal, ZIPSE, provides high-quality information on rare diseases from a central point of access. By integrating the targeted groups as well as different experts on medical information during the construction, the website can assure an improved search for information for users. ZIPSE can also serve as a model for other Web-based information systems in the field of rare diseases. REGISTERED REPORT IDENTIFIER: RR1-10.2196/7425.

Telephone health services in the field of rare diseases: a qualitative interview study examining the needs of patients, relatives, and health care professionals in Germany.

BACKGROUND: Rare diseases are, by definition, very serious and chronic diseases with a high negative impact on quality of life. Approximately 350 million people worldwide live with rare diseases. The resulting high disease burden triggers health information search, but helpful, high-quality, and up-to-date information is often hard to find. Therefore, the improvement of health information provision has been integrated in many national plans for rare diseases, discussing the telephone as one access option. In this context, this study examines the need for a telephone service offering information for people affected by rare diseases, their relatives, and physicians. METHODS: In total, 107 individuals participated in a qualitative interview study conducted in Germany. Sixty-eight individuals suffering from a rare disease or related to somebody with rare diseases and 39 health care professionals took part. Individual interviews were conducted using a standardized semi-structured questionnaire. Interviews were analysed using the qualitative content analysis, triangulating patients, relatives, and health care professionals. The fulfilment of qualitative data processing standards has been controlled for. RESULTS: Out of 68 patients and relatives and 39 physicians, 52 and 18, respectively, advocated for the establishment of a rare diseases telephone service. Interviewees expected a helpline to include expert staffing, personal contact, good availability, low technical barriers, medical and psychosocial topics of counselling, guidance in reducing information chaos, and referrals. Health care professionals highlighted the importance of medical topics of counselling-in particular, differential diagnostics-and referrals. CONCLUSIONS: Therefore, the need for a national rare diseases helpline was confirmed in this study. Due to limited financial resources, existing offers should be adapted in a stepwise procedure in accordance with the identified attributes.

Expectancy, usage and acceptance by general practitioners and patients: exploratory results from a study in the German outpatient sector.

OBJECTIVE: The study's objective was to assess factors contributing to the use of smart devices by general practitioners (GPs) and patients in the health domain, while specifically addressing the situation in Germany, and to determine whether, and if so, how both groups differ in their perceptions of these technologies. METHODS: GPs and patients of resident practices in the Hannover region, Germany, were surveyed between April and June 2014. A total of 412 GPs in this region were invited by email to participate via an electronic survey, with 50 GPs actually doing so (response rate 12.1%). For surveying the patients, eight regional resident practices were visited by study personnel (once each). Every second patient arriving there (inclusion criteria: of age, fluent in German) was asked to take part (paper-based questionnaire). One hundred and seventy patients participated; 15 patients who did not give consent were excluded. RESULTS: The majority of the participating patients (68.2%, 116/170) and GPs (76%, 38/50) owned mobile devices. Of the patients, 49.9% (57/116) already made health-related use of mobile devices; 95% (36/38) of the participating GPs used them in a professional context. For patients, age (P < 0.001) and education (P < 0.001) were significant factors, but not gender (P > 0.99). For doctors, neither age (P = 0.73), professional experience (P > 0.99) nor gender (P = 0.19) influenced usage rates. For patients, the primary use case was obtaining health (service)-related information. For GPs, interprofessional communication and retrieving information were in the foreground. There was little app-related interaction between both groups. CONCLUSIONS: GPs and patients use smart mobile devices to serve their specific interests. However, the full potentials of mobile technologies for health purposes are not yet being taken advantage of. Doctors as well as other care providers and the patients should work together on exploring and realising the potential benefits of the technology.

Adopting Quality Criteria for Websites Providing Medical Information About Rare Diseases.

BACKGROUND: The European Union considers diseases to be rare when they affect less than 5 in 10,000 people. It is estimated that there are between 5000 and 8000 different rare diseases. Consistent with this diversity, the quality of information available on the Web varies considerably. Thus, quality criteria for websites about rare diseases are needed. OBJECTIVE: The objective of this study was to generate a catalog of quality criteria suitable for rare diseases. METHODS: First, relevant certificates and quality recommendations for health information websites were identified through a comprehensive Web search. Second, all considered quality criteria of each certification program and catalog were examined, extracted into an overview table, and analyzed by thematic content. Finally, an interdisciplinary expert group verified the relevant quality criteria. RESULTS: We identified 9 quality certificates and criteria catalogs for health information websites with 304 single criteria items. Through this, we aggregated 163 various quality criteria, each assigned to one of the following categories: thematic, technical, service, content, and legal. Finally, a consensus about 13 quality criteria for websites offering medical information on rare diseases was determined. Of these categories, 4 (data protection concept, imprint, creation and updating date, and possibility to contact the website provider) were identified as being the most important for publishing medical information about rare diseases. CONCLUSIONS: The large number of different quality criteria appearing within a relatively small number of criteria catalogs shows that the opinion of what is important in the quality of health information differs. In addition, to define useful quality criteria for websites about rare diseases, which are an essential source of information for many patients, a trade-off is necessary between the high standard of quality criteria for health information websites in general and the limited provision of information about some rare diseases. Finally, transparently presented quality assessments can help people to find reliable information and to assess its quality.

Vision and challenges of a cartographic representation of expert medical centres for rare diseases.

In Germany, many highly specialized facilities for the diagnosis and treatment of rare diseases exist. However it is quite difficult for patients to find the required specialists because of the fact that information on the internet is scattered and of variable quality. The German Federal Ministry of Health initiated several activities to address this issue. This paper describes the project se-atlas which aims at presenting the medical care options for people with rare diseases on an interactive map and in a list format. Potential users of this resource will be patients and their relatives, doctors, non-medical personnel and the general public. Most information derived from the data sets is already listed in ORPHANET. The project's primary goals are to steadily increase the data set and to ensure its quality. This paper presents the goals and measures taken in this project. It gives an overview of the challenges implementing such a new service and the visions behind.

Education 2.0 -- how has social media and Web 2.0 been integrated into medical education? A systematical literature review.

OBJECTIVE: Present-day students have grown up with considerable knowledge concerning multi-media. The communication modes they use are faster, more spontaneous, and independent of place and time. These new web-based forms of information and communication are used by students, educators, and patients in various ways. Universities which have already used these tools report many positive effects on the learning behaviour of the students. In a systematic literature review, we summarized the manner in which the integration of Social Media and Web 2.0 into education has taken place. METHOD: A systematic literature search covering the last 5 years using MeSH terms was carried out via PubMed. RESULT: Among the 20 chosen publications, there was only one German publication. Most of the publications are from the US and Great Britain. The latest publications report on the concrete usage of the tools in education, including social networking, podcasts, blogs, wikis, YouTube, Twitter and Skype. CONCLUSION: The integration of Web 2.0 and Social Media is the modern form of self-determined learning. It stimulates reflection and actively integrates the students in the construction of their knowledge. With these new tools, the students acquire skills which they need in both their social and professional lives.

Technical data evaluation of a palliative care web-based documentation system.

A technical analysis of the web-based patient documentation system, eKernPäP, was conducted. The system is used by interdisciplinary pediatric palliative care teams in Germany to document outpatient care. The data of the system and the data of an external web analytic system have been evaluated. The results gave an overview how the system is used and what information is generated. A detailed analysis of singular forms showed that not all forms were filled in completely. With the help of the external web analytic system the navigation behavior of the users could be retraced. The users followed the given navigation from top to bottom. An existing exception in this pattern turned out to be misplacement and will be corrected in the next version. The technical analysis proved to be a good tool for improving a web-based documentation system.

KernPaeP - a web-based pediatric palliative documentation system for home care.

KernPaeP is a new web-based on- and offline documentation system, which has been developed for pediatric palliative care-teams supporting patient documentation and communication among health care professionals. It provides a reliable system making fast and secure home care documentation possible. KernPaeP is accessible online by registered users using any web-browser. Home care teams use an offline version of KernPaeP running on a netbook for patient documentation on site. Identifying and medical patient data are strictly separated and stored on two database servers. The system offers a stable, enhanced two-way algorithm for synchronization between the offline component and the central database servers. KernPaeP is implemented meeting highest security standards while still maintaining high usability. The web-based documentation system allows ubiquitous and immediate access to patient data. Sumptuous paper work is replaced by secure and comprehensive electronic documentation. KernPaeP helps saving time and improving the quality of documentation. Due to development in close cooperation with pediatric palliative professionals, KernPaeP fulfils the broad needs of home-care documentation. The technique of web-based online and offline documentation is in general applicable for arbitrary home care scenarios.