Emergency Medical Care of People with Intellectual Disabilities: A Scoping Review.

Purpose: The paper intends to do a scoping review of people with intellectual disabilities in emergency care where this group seems to face access barriers and discrimination. It analyses the conceptual and methodological framework for studies examining the former. Methods: A scoping review is conducted. The studies' quality is assessed via a checklist developed by the authors drawing on a compilation of common assessment tools for study quality. Results: Fourteen quantitative studies fulfil the inclusion criteria for further analysis. Summary measures are extracted. Results are synthesized with Andersen's Behavioral Model of Health Service Use. Studies employ a combination of variables attributable to different aspects of population characteristics and health behavior. Conclusion: Most studies seek to quantify or predict emergency care overuse by people with intellectual disabilities. Future studies should also take patients' poor health or treatment outcomes and their perspectives into account.

Effectiveness of the application of an electronic medication management support system in patients with polypharmacy in general practice: a study protocol of cluster-randomised controlled trial (AdAM).

INTRODUCTION: Clinically complex patients often require multiple medications. Polypharmacy is associated with inappropriate prescriptions, which may lead to negative outcomes. Few effective tools are available to help physicians optimise patient medication. This study assesses whether an electronic medication management support system (eMMa) reduces hospitalisation and mortality and improves prescription quality/safety in patients with polypharmacy. METHODS AND ANALYSIS: Planned design: pragmatic, parallel cluster-randomised controlled trial; general practices as randomisation unit; patients as analysis unit. As practice recruitment was poor, we included additional data to our primary endpoint analysis for practices and quarters from October 2017 to March 2021. Since randomisation was performed in waves, final study design corresponds to a stepped-wedge design with open cohort and step-length of one quarter. SCOPE: general practices, Westphalia-Lippe (Germany), caring for BARMER health fund-covered patients. POPULATION: patients (≥18 years) with polypharmacy (≥5 prescriptions). SAMPLE SIZE: initially, 32 patients from each of 539 practices were required for each study arm (17 200 patients/arm), but only 688 practices were randomised after 2 years of recruitment. Design change ensures that 80% power is nonetheless achieved. INTERVENTION: complex intervention eMMa. FOLLOW-UP: at least five quarters/cluster (practice). recruitment: practices recruited/randomised at different times; after follow-up, control group practices may access eMMa. OUTCOMES: primary endpoint is all-cause mortality and hospitalisation; secondary endpoints are number of potentially inappropriate medications, cause-specific hospitalisation preceded by high-risk prescribing and medication underuse. STATISTICAL ANALYSIS: primary and secondary outcomes are measured quarterly at patient level. A generalised linear mixed-effect model and repeated patient measurements are used to consider patient clusters within practices. Time and intervention group are considered fixed factors; variation between practices and patients is fitted as random effects. Intention-to-treat principle is used to analyse primary and key secondary endpoints. ETHICS AND DISSEMINATION: Trial approved by Ethics Commission of North-Rhine Medical Association. Results will be disseminated through workshops, peer-reviewed publications, local and international conferences. TRIAL REGISTRATION: NCT03430336. ClinicalTrials.gov (https://clinicaltrials.gov/ct2/show/NCT03430336).

People with multimorbidity in outpatient care: patient-focused and needs-oriented healthcare management (MamBo) - protocol for a multiperspective evaluation study.

BACKGROUND: With demographic change, the number of noncommunicable diseases, chronic diseases and multimorbidity is increasing, and so is the demand for health services. This represents a further challenge for the healthcare system. An adequate and efficient treatment of multimorbid patients requires a well-structured, informed and cross-indicated treatment. Therefore, a new form of coordinated, managed and cross-sectoral care for multimorbid patients - the "MamBo" care model - has been developed. Along with the implementation of MamBo, a process and outcome evaluation will be carried out, which is described in this study protocol. The aim of the study is to evaluate the care model according to its implementation process and effectiveness. METHODS: The MamBo-care model will be evaluated in multi-perspective terms. Thus, a process and outcome evaluation with several data sources will be conducted: (1) Annual focus groups and individual interviews with those involved in the process. (2) Various primary data, including surveys of patients, physicians and practice staff at the time of enrolment and 1 year later to enable pre-post comparison. (3) Claim data from the health insurance of the MamBo population in comparison to a comparative population, formed by the propensity score matching method. (4) Process data of the care management. The analysis of qualitative data will be carried out by content analysis according to Mayring. For the analysis of the quantitative data, multivariate analyses are planned. DISCUSSION: A new form of coordinated care has been introduced to improve intersectoral care of multimorbid patients and reduce the workload on physicians. The effects of the MamBo care model are being investigated for patients, physicians and the cost units. The results will form the basis for the decision whether the care model should be transferred to standard care and what needs to be taken into account for implementation. TRIAL REGISTRATION: The study was retrospectively registered in the German Register for Clinical Studies (DRKS00014047) on June 28, 2019.

Multidimensional analysis of factors responsible for the low prevalence of ambulatory peritoneal dialysis in Germany (MAU-PD): a cross-sectional Mixed-Methods Study Protocol.

INTRODUCTION: Patients with end-stage kidney failure can be treated either by transplant or by dialysis, which can be administered as haemodialysis (HD) or peritoneal dialysis (PD). Although they are equivalent therapeutic options in terms of mortality, the percentage of patients in Germany treated with PD is currently very low (∼6%) compared with other countries. The aim of our study is to analyse the factors behind this percentage and their relevance to the choice of dialysis treatment in Germany. This includes analyses of regional disparities in the provision of care for dialysis patients as well as the evaluations of costs and the influence of reimbursement structures. This approach should provide further insights to explain the variation in the usage of PD and HD and will help to define starting points for future interventions. METHODS AND ANALYSIS: A mixed-methods approach will be applied to several data sources, including administrative data (ambulatory physicians' claim data, statutory health insurance claim data), quality assurance data from one of the largest German dialysis providers Kuratorium für Dialyse (KfH) and qualitative and quantitative survey data (patients, nephrologists and dialysis nurses). Qualitative data will be analysed content-analytically. Based on the quantitative data, multivariable analyses will be performed and, where possible, hierarchical models will be tested. This multidimensional approach will enable us to account for the different factors influencing the penetration of PD in Germany. ETHICS AND DISSEMINATION: Ethics approval (17-299) has been obtained from the Ethics Committee of the Medical Faculty of the University of Cologne on 25 April 2018. National and international dissemination will be accomplished by informing healthcare practitioners, patients and professional organisations and other stakeholders via conferences, scientific and non-scientific publications and seminars. TRIAL REGISTRATION NUMBER: DRKS00012555; Pre-Results.

Last Year of Life Study Cologne (LYOL-C): protocol for a cross-sectional mixed methods study to examine care trajectories and transitions in the last year of life until death.

INTRODUCTION: The last year of life constitutes a particularly vulnerable phase for patients, involving nearly all health and social care structures. Yet, little scientific evidence is available that provides insight into the trajectories including the number and types of care setting transitions, transitions into palliative care and the dying phase. Only few studies have focused on difficulties associated with having to move between health and social care settings in the last year of life, although patients face a significant risk of adverse events. The Last Year of Life Study Cologne (LYOL-C) aims to fill this gap. METHODS AND ANALYSIS: LYOL-C is a mixed-methods study composed of four steps: (1) Claims data collected by the statutory health insurance funds of deceased persons will be analysed with regard to patient care trajectories, health service transitions and costs in the last year of life. (2) Patient trajectories and transitions in healthcare will additionally be reconstructed by analysing the retrospective accounts of bereaved relatives (n=400) using a culturally adapted version of the Views of Informal Carers-Evaluation of Services Short Form questionnaire and the Patient Assessment of Care for Chronic Conditions Short Form questionnaire adapted for relatives. (3) Qualitative interviews with bereaved relatives (n=40-60) will provide in-depth insight into reasons for transitions and effects on patients' quality of life. (4) Focus groups (n=3-5) with Healthcare Professionals will be conducted to discuss challenges associated with transitions in the last year of life. ETHICS AND DISSEMINATION: Ethical approval has been obtained from the Ethics Commission of the Faculty of Medicine of Cologne University (#17-188). Results will be submitted for publication in peer-reviewed journals and presented at national and international conferences. TRIAL REGISTRATION NUMBER: The study is registered in the German Clinical Trials Register (DRKS00011925) and in the Health Services Research Database (VfD_CoRe-Net_17_003806).

The size of the population potentially in need of palliative care in Germany--an estimation based on death registration data.

BACKGROUND: No data exist on the size of the population potentially in need of palliative care in Germany. The aim of this study is to estimate the size of the German population that may benefit from palliative care. METHOD: Based on existing population-based methods (Rosenwax and Murtagh), German death registration data were analyzed and contrasted with international results. The data include all death cases in 2013 in Germany. RESULTS: According to the method Rosenwax defined, between 40.7% (minimal estimate) and 96.1% (maximal estimate) of death cases could benefit from palliative care. The estimation, based on Murtagh's refined method, results in 78.0% of death cases potentially being eligible for palliative care. The percentage of potential palliative care candidates is conditioned by age. Based on the Murtagh Method, in the age category between 30 and 39 years, a potential demand for palliative care can be found for 40.4% percent of all deaths occurring in this age category, with this number increasing to 80.3% in the age bracket of 80 years and over. CONCLUSION: An estimation of the size of the population in need is essential for healthcare planning. Therefore, our data serve as a guide and starting point for further research.

Unmet needs of patients feeling severely affected by multiple sclerosis in Germany: a qualitative study.

BACKGROUND: The needs of patients feeling severely affected by multiple sclerosis (MS) have rarely been investigated. However this is essential information to know before care can be improved, including adding palliative care (PC) services where helpful. Since it remains unclear at what point specialized palliative care should begin for this patient group, this study focuses on needs in general. OBJECTIVE: The objective was to explore the subjectively unmet needs of patients feeling severely affected by MS. METHODS: The study used a qualitative cross-sectional approach for needs assessment. Fifteen patients self-reporting feeling severely affected by MS were recruited and interviewed using a combination of purposive and convenience sampling (five were accompanied by a caregiver relative). Interviews were recorded and transcribed verbatim, followed by qualitative content analysis. RESULTS: Unmet needs were identified in the main categories "support of family and friends," "health care services," "managing everyday life," and "maintaining biographical continuity." Patients expressed the desire for more support from their families and to be viewed as distinct individuals. They see a substantial deficit in the physician-patient relationship and in the coordination of services. A decrease in expressed unmet needs was found for patients more severely affected and less socially integrated. CONCLUSIONS: To address the unmet needs of severely affected MS patients, health care services need to be improved and linked with existing PC services. Special attention is required to form supporting professional-patient relationships. Multiprofessional services should be accessible for patients, while integrating relatives. All services should have an individual approach to provide needs-tailored support.