End-of-life care in Germany between 2016 and 2020 - A repeated cross-sectional analysis of statutory health insurance data.

BACKGROUND: The Hospice and Palliative Care Act of 2015 aimed at developing and regulating the provision of palliative care (PC) services in Germany. As a result of the legal changes, people with incurable diseases should be enabled to experience their final stage of life including death according to their own wishes. However, it remains unknown whether the act has impacted end-of-life care (EoLC) in Germany. OBJECTIVE: The present study examined trends in EoLC indicators for patients who died between 2016 and 2020, in the context of Lower Saxony, Germany. METHODS: Repeated cross-sectional analysis was conducted on data from the statutory health insurance fund AOK Lower Saxony (AOK-LS), referring to the years 2016-2020. EoLC indicators were: (1) the number of patients receiving any form of outpatient PC, (2) the number of patients receiving generalist outpatient PC and (3) specialist outpatient PC in the last year of life, (4) the onset of generalist outpatient PC and (5) the onset of specialist outpatient PC before death, (6) the number of hospitalisations in the 6 months prior to death and (7) the number of days spent in hospital in the 6 months prior to death. Data for each year were analysed descriptively and a comparison between 2016 and 2020 was carried out using t-tests and chi-square tests. RESULTS: Data from 160,927 deceased AOK-LS members were analysed. The number of patients receiving outpatient PC remained almost consistent over time (2016 vs. 2020 p = .077). The number of patients receiving generalist outpatient PC decreased from 28.4% (2016) to 24.5% (2020; p < .001), whereas the number of patients receiving specialist outpatient PC increased from 8.5% (2016) to 11.2% (2020; p < .001). The onset of generalist outpatient PC moved from 106 (2016) to 93 days (2020; p < .001) before death, on average. The onset of specialist outpatient PC showed the reverse pattern (2016: 55 days before death; 2020: 59 days before death; p = .041). CONCLUSION: Despite growing needs for PC at the end of life, the number of patients receiving outpatient PC did not increase between 2016 and 2020. Furthermore, specialist outpatient PC is being increasingly prescribed over generalist outpatient PC. Although the early initiation of outpatient PC has been proven valuable for the majority of people at the end of life, generalist outpatient PC was not initiated earlier in the disease trajectory over the study period, as was found to be true for specialist outpatient PC. Future studies should seek to determine how existing PC needs can be optimally met within the outpatient sector and identify factors that can support the earlier initiation of especially generalist outpatient PC. TRIAL REGISTRATION: The study "Optimal Care at the End of Life" was registered in the German Clinical Trials Register (DRKS00015108; 22 January 2019).

[Advancement of an intermediate level of outpatient palliative care - A Delphi study]. / Weiterentwicklung der "Besonders qualifizierten und koordinierten palliativmedizinischen Versorgung" (BQKPMV) ­ Ergebnisse einer Delphi-Befragung.

INTRODUCTION: In the course of the further development of palliative care in Germany, an agreement on an intermediate level of outpatient palliative care, the so-called BQKPMV (specially qualified and coordinated palliative homecare) was realised in 2017. Family physicians play a central role in the BQKPMV; among other things, they are responsible for the coordination of care. There are indications that barriers exist in the practical implementation of the BQKPMV and that an adjustment may be necessary. This work is part of the Polite project (analysis of the implementation of an intermediate level of outpatient palliative care in the reality of care and recommendations for further development) and aims at building consensus on recommendations for the further development of the BQKPMV. METHODS: Between June and October 2022, an online Delphi survey was conducted among experts for outpatient palliative care from all over Germany (providers, professional associations, funders, science, self-government). The content of the recommendations, which were voted on as part of the Delphi survey, was based on the results of both the first project phase and an expert workshop. Participants rated the extent to which they agree with a) the clarity of the wording, and b) the relevance for the further development of the BQKPMV on a four-point Likert scale. Consensus was assumed when 75% of the participants (rather) agreed to a recommendation with regard to both criteria. If no consensus was reached, the recommendations were adjusted using the free text comments and presented again in the next round. Descriptive analyses were applied. RESULTS: Forty-five experts participated in the first Delphi round, 31 in the second, and 30 in the third round (43% female, average age 55). Consensus was obtained for seven recommendations in round 1, for six in round 2 and for three in round 3. These final 16 recommendations relate to four topics: awareness and implementation of the BQKPMV (6 recommendations), framework conditions of the BQKPMV (3), discrimination of forms of care (5), and cooperation at the interfaces of care (2). DISCUSSION: The Delphi method was used to identify concrete recommendations for the further development of the BQKPMV that are relevant to health care practice. In the final set of recommendations, a particular focus lies on increasing awareness and communicating information about the scope of the health care service, added value and framework conditions of the BQKPMV. CONCLUSION: The results provide an empirically sound basis for the further development of the BQKPMV. They show a concrete need for change and highlight that an optimisation of the BQKPMV is necessary.

[Prevalence of metabolic syndrome : Analysis based on routine statutory health insurance data]. / Prävalenz des metabolischen Syndroms : Eine Analyse auf Basis von Routinedaten einer gesetzlichen Krankenversicherung.

BACKGROUND: The metabolic syndrome is a decisive risk factor for the manifestation of cardiovascular and metabolic diseases. Metabolic syndrome is the term used to describe the joint presence of specific diseases (obesity, hypertension, type 2 diabetes mellitus, disorders of fat metabolism). A classification is made more difficult by inconsistent definition criteria and a missing International Statistical Classification of Diseases and Related Health Problems (ICD) code. There are no known prevalence studies for Germany based on routine data of the statutory health insurance (GKV). OBJECTIVE: The main aim of the present study was to classify the metabolic syndrome based on routine data of the GKV and to estimate the frequency of diagnosis. In addition, the influence of social factors (school and educational qualifications) was examined for the subgroup of employees with social insurance. MATERIAL AND METHODS: A retrospective routine data analysis was carried out based on routine administrative data from the AOK Lower Saxony (AOKN). In contrast to the established definitions, which use medical parameters, the risk factors are taken into account via four coded diagnoses according to the ICD-10 classification: 1) obesity (E66.0, E66.8, E66.9), 2) type 2 diabetes mellitus (E11), 3) hypertension (I10) and 4) metabolic disorders (E78). A metabolic syndrome is present if at least two of the four diagnoses are present. RESULTS: The prevalence of metabolic syndrome in the population of the AOKN in 2019 was 25.7%. The standardized comparison according to the census population of 2011 showed an increase in the frequency of diagnosis (2009: 21.5% and 2019: 24%). The frequency of diagnosis differed according to school and educational qualifications. CONCLUSION: A classification and analysis of the frequency of the metabolic syndrome based on routine data of the GKV is possible. Between 2009 and 2019 there was a clear increase in the frequency of diagnoses.

Heterogeneous Preferences for Colorectal Cancer Screening in Germany: Results of a Discrete Choice Experiment.

OBJECTIVES: Colorectal cancer (CRC) screening tests differ in benefits, harms, and processes, making individual informed decisions preference based. The objective was to analyze the preferences of insurees in Germany for characteristics of CRC screening modalities. METHODS: A generic discrete choice experiment with 2-alternative choice sets and 6 attributes (CRC mortality, CRC incidence, complications, preparation, need for transportation, and follow-up; 3 levels each) depicting characteristics of fecal testing, sigmoidoscopy, and colonoscopy was generated. Participants completed 8 choice tasks. Internal validity was tested using a within-set dominated pair. Between June and October 2020, written questionnaires were sent to a stratified random sample (n = 5000) of 50-, 55-, and 60-year-old insurees of the AOK (Allgemeine Ortskrankenkasse) Lower Saxony, who had previously received an invitation to participate in the organized screening program including evidence-based information. Preferences were analyzed using conditional logit, mixed logit, and latent-class model. RESULTS: From 1282 questionnaires received (26% [1282 of 4945]), 1142 were included in the analysis. Approximately 42% of the respondents chose the dominated alternative in the internal validity test. Three heterogeneous preference classes were identified. Most important attributes were preparation (class 1; n = 505, 44%), CRC mortality (class 2; n = 347, 30%), and CRC incidence (class 3; n = 290, 25%). Contrary to a priori expectations, a higher effort was preferred for bowel cleansing (class 1) and accompaniment home (classes 1 and 2). CONCLUSION: Internal validity issues of choice data need further research and warrant attention in future discrete choice experiment surveys. The observed preference heterogeneity suggests different informational needs, although the underlying reasons remained unclear.

How is and how should healthcare for people with multiple sclerosis in Germany be designed?-The rationale and protocol for the mixed-methods study Multiple Sclerosis-Patient-Oriented Care in Lower Saxony (MS-PoV).

BACKGROUND: Multiple sclerosis (MS) is the most common autoimmune inflammatory disease of the central nervous system in Europe, often causing severe physical, cognitive and emotional impairments. Currently, it is unclear whether the healthcare provisions of people with MS (PwMS) are in line with the recommendations for treatment based on guidelines or patients' needs. The main objectives of the study are as follows: (a) to investigate how well PwMS are treated; and (b) to develop a needs-oriented, patient-centred care model. METHODS: This mixed-methods study focuses on adult PwMS living in Lower Saxony, a federal state in Germany. The qualitative study comprises focus groups with PwMS, physicians and people involved in the healthcare process as well as a future workshop. The quantitative study comprises a cross-sectional online survey and addresses the patient-relevant outcomes and needs, as previously determined by literature searches and focus groups. It will be administered to all PwMS who are insured by the statutory health insurance company involved in the project (n~7,000). The survey data will be linked to the longitudinal secondary data from the statutory health insurance company and data from the German MS registry where available. The linked and single data sources will be statistically analysed. DISCUSSION: By comprehensively comparing the current healthcare provisions with the needs and requirements of PwMS, the strengths and weaknesses of the overall healthcare process and provision of assistive devices can be identified. The barriers and facilitators of the health service providers and their impact on daily life will be explored (qualitative analyses). Reliable recommendations for improvements will be given based on a study population drawn from the largest statutory health insurance company in Lower Saxony (quantitative analyses). However, the inherent advantages and limitations of the qualitative and quantitative research approaches need to be considered. TRIAL REGISTRATION: The study is registered at German Clinical Trials Register DRKS00021741.

[Frequency of diagnosed non-alcololic fatty liver disease (NAFLD) in the German population - An analysis based on health insurance data]. / Die Häufigkeit von diagnostizierten Fettlebererkrankungen (NAFLD) in der deutschen Bevölkerung ­ Eine Analyse auf der Basis von GKV-Routinedaten.

BACKGROUND: Non-alcoholic fatty liver disease (NAFLD) is one of the most common chronic liver diseases in Germany. In the long term, there is an increased risk of developing liver cirrhosis and subsequent diseases. Epidemiologic studies on NAFLD prevalence in Germany are scarce. The aim of the study was to assess administrative incidence and prevalence or, more specifically, the number of patients diagnosed with NAFLD in the period from 2008 to 2018. METHODS: Analyses are based on administrative data of a large statutory health insurance fund. All individuals who were insured in the year of analysis and in the three-year pre-observation period were included (between 1.7-2 million insured per analysis year). NAFLD-patients were identified using relevant ICD-10 codes (K76.0 und K75.8). RESULTS: In 2018, 4.66 % of insured persons had a NAFLD diagnosis, 0.87 % were diagnosed first-time. Diagnoses of nonalcoholic steatohepatitis (NASH) were comparatively rare (0.09 %). Data show an uptake of NAFLD diagnoses over time. The number of incident cases per year has hardly changed. Patients with diseases of the metabolic syndrome had an increased chance of being diagnosed with NAFLD. CONCLUSION: It becomes evident that NAFLD is frequently diagnosed in everyday medical practice, although data from population-based studies suggest an even higher prevalence.