Consensus-based recommendations for the development and expansion of palliative day care clinics in Germany: results of a Delphi study.

Background: Needs-based, patient-oriented palliative care includes palliative day care clinics as a specialized semi-inpatient care offer. However, the establishment and development of these facilities has been unsystematic. Research is needed to strengthen their transparency and ensure their accessibility, quality, and structural adequacy.

Patients' and Relatives' Preferences for Outpatient and Day Care Services Within End-of-Life Care in Germany - A Discrete Choice Experiment.

Purpose: In Germany, patients with incurable chronic diseases living at home increasingly have the option of using outpatient and day care hospice and specialized palliative care services. The present study examined and compared patients' and their relatives' preferences for end-of-life outpatient and day care services.

Patients And Methods: The study used a questionnaire integrating a discrete choice experiment.

[Empirically derived recommendations for the development and expansion of day hospices in Germany - Results of a Delphi expert panel].

Introduction: A needs-based and patient-oriented hospice and palliative care also includes day hospices as a specialised semi-inpatient care offer. The establishment and development of these facilities in Germany has been rather unsystematic. In order to ensure quality and adequacy of these structures, research is needed.

Processing and decay of 6S-1 and 6S-2 RNAs in .

Noncoding 6S RNAs regulate transcription by binding to the active site of bacterial RNA polymerase holoenzymes. Processing and decay of 6S-1 and 6S-2 RNA were investigated in by northern blot and RNA-seq analyses using different RNase knockout strains, as well as by in vitro processing assays. For both 6S RNA paralogs, we identified a key-but mechanistically different-role of RNase J1.

The impact of different care dependencies on people's willingness to provide informal care: a discrete choice experiment in Germany.

Background: Informal care provided by family members, friends, or neighbors is a major pillar in the German long-term care system. As the number of care-dependent older adults grow, ensuring their future care still relies on the willingness of family members, friends, or neighbors to assume the role of an informal caregiver. This study aimed to investigate the impact on people's willingness to provide informal care to a close relative with predominately cognitive compared to physical impairments.

[Informal care and occupation: Factors influencing the willingness to provide care].

Introduction: The proportion of people in need of care will continue to rise in Germany. In 2019, the majority of people in need of care was cared for at home. Reconciling caregiving and work poses a heavy burden for many caregivers.

A systematic review to identify the use of stated preference research in the field of older adult care.

In the design of long-term care systems, preferences can serve as an essential indication to better tailor services to the needs, wishes and expectations of its consumers. The aim of this systematic review was to summarize and synthesize available evidence on long-term care preferences that have been elicited by quantitative stated-preference methods. The databases PubMed and Web of Science were searched for the period 2000 to 2020 with an extensive set of search terms.

Willingness to provide informal care to older adults in Germany: a discrete choice experiment.

As the German population is continually aging and the majority of older adults still wish to 'age in place', the need for informal care provided by family and friends will correspondingly continue to increase. In addition, while the need for formal (professional) care services is also likely to increase, the supply already does not meet the demand in Germany today. The aim of our study is the elicitation of people's willingness to provide informal care by means of a discrete choice experiment.

Exploring the status of and demand for palliative day-care clinics and day hospices in Germany: a protocol for a mixed-methods study.

Background: To date, the establishment and development of palliative day-care clinics and day hospices in Germany have been completely unsystematic. Research is needed to gain insight into these services and to ensure their accessibility and quality. Accordingly, the ABPATITE research project aims at: (1) identifying the characteristics of palliative day-care clinics and day hospices in Germany, (2) determining demand and preferences for these services, and (3) proposing recommendations (with expert agreement) for the needs-based establishment and development of these services.

Preferences of patients with asthma or COPD for treatments in pulmonary rehabilitation.

Introduction: Pulmonary rehabilitation (PR) aims to improve disease control in patients with chronic obstructive pulmonary disease (COPD) and asthma. However, the success of PR-programs depends on the patients' participation and willingness to cooperate. Taking the patients' preferences into consideration might improve both of these factors.

Willingness and preparedness to provide care: interviews with individuals of different ages and with different caregiving experiences.

Background: At present, the provision of informal care to older relatives is an essential pillar of the long-term care system in Germany. However, the impact of demographic and social changes on informal caregiving remains unclear.

Methods: Thirty-three semi-structured interviews were conducted with care consultants, informal caregivers and people without any caregiving experience to explore if people are willing to provide older adult care and how prepared these are with regard to the possibility of becoming care dependent themselves.

Lessons from an Experiential Approach to Patient Community Engagement in Rare Disease.

Meaningful engagement between biopharmaceutical companies and patient communities has increasingly become an important part of the therapeutic-development process, as such engagement improves the understanding of the multifaceted challenges and unmet needs that communities experience and provides an opportunity to inform the approach to the development of new therapies and services. Presented here are learnings from a community-advisor program designed to engage families of patients with Duchenne muscular dystrophy (DMD) in a manner that enabled caregivers to make valuable contributions to the therapeutic-development process and to the DMD community. Parents of children with DMD, representing the broader DMD community, were identified in partnership with patient-advocacy organizations and invited to participate in a community-advisor meeting with members of Wave Life Sciences.

["But you often come unstuck on particularities" - Care consultants on legislation amendments and the challenges of their job: A qualitative investigation].

Introduction: Since the implementation of long-term care insurance in 1995, various reforms have contributed to the development of the German nursing care system in order to meet the structural and financial needs of the growing number of people in need of care. The aim of this paper is to present an assessment of care consultants on past legislation, challenges encountered during their work and suggestions to improve the current care system.

Methods: 14 semi-structured, face-to-face interviews were conducted with care consultants.

Patient-reported data informing early benefit assessment of rare diseases in Germany: A systematic review.

Background: Since the implementation of the Regulation on Patient Integration (2003), the Act on the Reorganization of the Pharmaceutical Market (2011), and the Patient Rights Law (2013), the inclusion of patient perspectives has been further anchored in the German early benefit assessment process. During the assessment of rare disease interventions, patient perspectives are particularly important, as clinical studies are often designed acknowledging small samples and patients suffering from severe symptoms and the chronic course of the disease. Therefore, our research question is whether patient perspectives are considered as part of early benefit assessments for rare diseases.

Integrating patient perspectives in medical decision-making: a qualitative interview study examining potentials within the rare disease information exchange process in practice.

Background: Many European countries have recently implemented national rare disease plans. Although the network is strengthening, especially on the macro and meso levels, patients still go a long way through healthcare systems, with many health professionals involved and scarce evidence to gather. Specifically, patient involvement in the form of shared decision-making can offer further potential to increase healthcare systems' efficiency on a micro level.

Needs and preferences of informal caregivers regarding outpatient care for the elderly: a systematic literature review.

Background: Informal caregivers are an essential pillar for ensuring and maintaining the outpatient care of the frail elderly. Due to demographic changes, including an increase in the number of people in need of care as well as changing social structures (full-time employment of women, increasing number of single households, etc.) these informal care structures are fraught by considerable challenges.

Informal and formal care preferences and expected willingness of providing elderly care in Germany: protocol for a mixed-methods study.

Introduction: In Germany, the number of elderly people in need of care is expected to increase from 2.4 million in 2015 to 3.2 million in 2030.

Which attributes of whole genome sequencing tests are most important to the general population? Results from a German preference study.

Objective: The aim of this study was to identify the preferences for whole genome sequencing (WGS) tests without genetic counseling.

Methods: A discrete choice experiment was conducted where participants chose between two hypothetical alternatives consisting of the following attributes: test accuracy, test costs, identified diseases, probability of disease occurrence, and data access. People from the general German population aged ≥18 years were eligible to participate in the survey.

Cas9-mediated excision of proximal DNaseI/H3K4me3 signatures confers robust silencing of microRNA and long non-coding RNA genes.

CRISPR/Cas9-based approaches have greatly facilitated targeted genomic deletions. Contrary to coding genes however, which can be functionally knocked out by frame-shift mutagenesis, non-coding RNA (ncRNA) gene knockouts have remained challenging. Here we present a universal ncRNA knockout approach guided by epigenetic hallmarks, which enables robust gene silencing even in provisionally annotated gene loci.

Shaping an Effective Health Information Website on Rare Diseases Using a Group Decision-Making Tool: Inclusion of the Perspectives of Patients, Their Family Members, and Physicians.

Background: Despite diverging definitions on rare conditions, people suffering from rare diseases share similar difficulties. A lack of experience by health professionals, a long wait from first symptoms to diagnosis, scarce medical and scientific knowledge, and unsatisfactory treatment options all trigger the search for health information by patients, family members, and physicians. Examining and systematically integrating stakeholder needs can help design information platforms that effectively support this search.

Therapy preferences of patients with lung and colon cancer: a discrete choice experiment.

Objectives: There is increasing interest in studies that examine patient preferences to measure health-related outcomes. Understanding patients' preferences can improve the treatment process and is particularly relevant for oncology. In this study, we aimed to identify the subgroup-specific treatment preferences of German patients with lung cancer (LC) or colorectal cancer (CRC).

[Priority setting and rationing of pharmaceuticals - an experimental analysis of discussion processes].

Background/objective: In the face of rising expenditure among statutory sickness funds in Germany it is necessary to start a discussion about priority setting in the healthcare system. For a long time this issue has been avoided in healthcare debates. As a result, normative directives are still missing, which can lead to priority setting among healthcare providers in daily healthcare practice.

Measuring patients' priorities using the Analytic Hierarchy Process in comparison with Best-Worst-Scaling and rating cards: methodological aspects and ranking tasks.

Background: Identifying patient priorities and preference measurements have gained importance as patients claim a more active role in health care decision making. Due to the variety of existing methods, it is challenging to define an appropriate method for each decision problem. This study demonstrates the impact of the non-standardized Analytic Hierarchy Process (AHP) method on priorities, and compares it with Best-Worst-Scaling (BWS) and ranking card methods.

[Cost-Effectiveness of Pharmacological Smoking Cessation Therapies - A Systematic Literature Review].

Through the promotion of smoking cessation premature mortality can be prevented. Therefore it is necessary to provide effective and cost-effective smoking cessation interventions. In Germany the cost of pharmacological smoking cessation measures are not yet reimbursed by the statutory health insurance.

Comparison of different approaches applied in Analytic Hierarchy Process - an example of information needs of patients with rare diseases.

Background: The Analytic Hierarchy Process (AHP) is increasingly used to measure patient priorities. Studies have shown that there are several different approaches to data acquisition and data aggregation. The aim of this study was to measure the information needs of patients having a rare disease and to analyze the effects of these different AHP approaches.