Self-reported medication intake vs information from other data sources such as pharmacy records or medical records: Identification and description of existing publications, and comparison of agreement results for publications focusing on patients with cancer - a systematic review.

PURPOSE: To identify and describe publications addressing the agreement between self-reported medication and other data sources among adults and, in a subgroup of studies dealing with cancer patients, seek to identify parameters which are associated with agreement. METHODS: A systematic review including a systematic search within five biomedical databases up to February 28, 2019 was conducted as per the PRISMA Statement. Studies and agreement results were described. For a subgroup of studies dealing with cancer, we searched for associations between agreement and patients' characteristics, study design, comparison data source, and self-report modality. RESULTS: The literature search retrieved 3392 publications. Included articles (n = 120) show heterogeneous agreement. Eighteen publications focused on cancer populations, with relatively good agreement identified in those which analyzed hormone therapy, estrogen, and chemotherapy (n = 11). Agreement was especially good for chemotherapy (proportion correct ≥93.6%, kappa ≥0.88). No distinct associations between agreement and age, education or marital status were identified in the results. There was little evaluation of associations between agreement and study design, self-report modality and comparison data source, thus not allowing for any conclusions to be drawn. CONCLUSION: An overview of the evidence available from validation studies with a description of several characteristics is provided. Studies with experimental design which evaluate factors that might affect agreement between self-report and other data sources are lacking.

[Checklist for the Development and Assessment of Cost-of-Illness Studies]. / Checkliste zur Erstellung und Bewertung von Krankheitskostenstudien.

BACKGROUND: Cost-of-illness (CoI) studies are important instruments for estimating the socioeconomic burden of specified diseases. CoI studies provide important information about the cost structure of a disease, the resulting research need, approaches to improve aspects of care and, monetary consequences from different perspectives. This information can be useful for healthcare research and health policy. Due to heterogeneity of available Cost-of-Illness studies, the working group 'Health Economics' of the German Network for Healthcare Research (DNVF) in accordance with the German Society for Health Economics (DGGÖ) developed an instrument for the planning, conduct and assessment of CoI studies. METHODS: The checklist was developed based on a systematic literature search of published national and international checklists as well as guidelines and recommendations for development and assessment of CoI studies and health economic evaluations. Structure and subject matter of the generic checklist was designed, approved and, finally, examined in a pretest by the working group. RESULTS: Based on the results of the literature search (n=2 454), 58 articles were used for the identification of relevant criteria for the checklist. With respect to the results of the pretest, 6 dimensions were included in the checklist: (i) general aspects, (ii) identification of resources, (iii) description and quantification of resource consumption, (iv) valuation of resources (v) analysis and presentation of results and (vi) discussion and conclusion. In total, the 6 dimensions were operationalized through 37 items. CONCLUSION: This checklist is an initial approach to improve transparency and understanding of CoI studies in terms of the extent, structure and development of the socioeconomic burden of diseases. The checklist supports the comparability of different studies and facilitates study conception.

Time cost of diabetes: Development of a questionnaire to assess time spent on diabetes self-care.

BACKGROUND: Methods to measure patient time spent on health-related activities are currently not well elaborated or standardized. AIM: The purpose of this study was to develop a recall questionnaire measuring patient time devoted to diabetes self-care and to examine its feasibility and validity under field conditions. METHODS: The initial questionnaire was developed on the basis of instruments frequently used to assess self-care behavior in patients with diabetes, evaluated in two focus groups with patients with type 2 diabetes (N=15) and tested in a random sample of patients with type 2 diabetes (N=178). To assess the validity of the questionnaire, four hypotheses about expected differences in self-care time across various patient sub-groups were tested. RESULTS: The final questionnaire includes thirteen items estimating time spent on regular diabetes-related activities undertaken in the previous seven days. 78% of respondents completed the questionnaire without item non-response or other evident problems. As hypothesized, respondents receiving insulin treatment, those with poor self-rated health and those with diabetes-related emotional distress (PAID-5 score ≥8) reported spending more time on diabetes self-care than the rest of the sample. Contrary to our assumption, no differences in time spent on diabetes self-care between employed and retired individuals were detected by the questionnaire. CONCLUSION: The recall questionnaire measuring patient time devoted to a broad range of regular diabetes self-care activities was developed and its feasibility was proved under field conditions. Ideally, the questionnaire should be further validated within a variety of populations. Exploration of the convergent validity between the recall method and prospective diary may be also useful.

Studies analysing the need for health-related information in Germany - a systematic review.

BACKGROUND: Exploring health-related information needs is necessary to better tailor information. However, there is a lack of systematic knowledge on how and in which groups information needs has been assessed, and which information needs have been identified. We aimed to assess the methodology of studies used to assess information needs, as well as the topics and extent of health-related information needs and associated factors in Germany. METHODS: A systematic search was performed in Medline, Embase, Psycinfo, and all databases of the Cochrane Library. All studies investigating health-related information needs in patients, relatives, and the general population in Germany that were published between 2000 and 2012 in German or English were included. Descriptive content analysis was based on predefined categories. RESULTS: We identified 19 studies. Most studies addressed cancer or rheumatic disease. Methods used were highly heterogeneous. Apart from common topics such as treatment, diagnosis, prevention and health promotion, etiology and prognosis, high interest ratings were also found in more specific topics such as complementary and alternative medicine or nutrition. Information needs were notable in all surveyed patient groups, relatives, and samples of the general population. Younger age, shorter duration of illness, poorer health status and higher anxiety and depression scores appeared to be associated with higher information needs. CONCLUSION: Knowledge about information needs is still scarce. Assuming the importance of comprehensive information to enable people to participate in health-related decisions, further systematic research is required.