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. A national Delphi study was conducted to generate appropriate recommendations for the establishment and development of palliative day care clinics in Germany. METHODS: Recommendations were formulated from focus group data on the development and expansion of palliative day care clinics in Germany. Experts on in- and outpatient palliative care rated 28 recommendations for relevance and feasibility, respectively, using a 4-point Likert-type scale. Suggestions for improvement were captured via free text comments. Items were considered consented when more than 80% of the experts scored them 4 (strongly agree) or 3 (somewhat agree), regarding both relevance and feasibility. RESULTS: A total of 23 experts (32% response rate) completed three Delphi rounds. Following the first round, 10 of 28 recommendations were revised according to participants' comments; 1 recommendation was rejected. After the second round, 3 of these 10 recommendations were revised, while 3 were rejected. Consensus was achieved after the third round for 22 of the initial recommendations. CONCLUSIONS: The Delphi-consented recommendations provide a basis for the targeted evidence- and needs-based development of palliative day care clinics. The findings show a need for standards setting and the meaningful integration of these clinics into existing structures. TRIAL REGISTRATION: The present study was prospectively registered on April 20, 2020, with the German Clinical Trials Register (DRKS00021446).

[Empirically derived recommendations for the development and expansion of day hospices in Germany - Results of a Delphi expert panel]. / Empirisch abgeleitete Empfehlungen für den Auf- und Ausbau von Tageshospizen in Deutschland ­ Ergebnisse einer Delphi-Befragung mit Expert:innen.

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. METHODS: A Delphi consensus study was conducted online from November 2022 to February 2023 aiming at generating recommendations for the development and expansion of day hospices in Germany. For each recommendation, the participants indicated on a four-point verbal rating scale how much they agreed upon a) the relevance and b) the feasibility of the recommendation. Items were considered consented when 80% of the participants (strongly) agreed with the recommendation regarding both criteria. If no consensus was reached, the recommendations were revised according to the participants' free text comments and presented in the next Delphi round. Descriptive analyses were applied. RESULTS: A total of 64 experts participated in the first Delphi round and 44 in the second. In round 1, 34 recommendations and in round 2 six recommendations were consented. The final set contains a total of 40 recommendations: 18 on the tasks of day hospices, 13 on cooperation, 7 on funding, and 2 on public relations. DISCUSSION: Recommendations for the development and expansion of day hospices in Germany were developed. Due to their highly rated feasibility, the recommendations should be directly transferable into care practice. It remains to be seen to what extent they will be taken into account in the renegotiation of the framework agreement for day hospices. CONCLUSION: The Delphi-consented recommendations provide a basis to guide action in the currently very dynamic development of hospice work and palliative care in Germany.

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. For six scenarios, participants chose between two hypothetical end-of-life care offers, described by seven attributes. The model compared place of care, frequency and duration of care and support, specialized medical palliative care, accompanied activities, and relieving patient counselling. The model also included optional overnight care and willingness to pay. Patients and the relatives of patients suffering from incurable, chronic diseases who were not yet receiving palliative care were recruited via hospitals and self-help groups (06/2021-07/2022). Results: The results were based on data from 436 questionnaires (patients: n=263, relatives: n=173). All attributes had a statistically significant impact on choice decisions, with place of care showing the greatest importance. All respondents highly preferred care in the patient's home over out-of-home care. Patients stressed the importance of special medical (palliative) care and valued accompanied activities, often facilitated by hospice volunteers. Relatives, but not patients, considered the frequency and duration of care highly relevant. Conclusion: The results suggest a higher demand for care in the patient's home than for out-of-home care. Patients' and relatives' high preference for special medical care and the relief of family caregiver burden should be considered in the design of day care services.

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. METHODS: An online survey was distributed to the general population in Germany, which resulted in 260 participants. A discrete choice experiment was created to elicit and quantify people's preferences. A conditional logit model was used to investigate preferences and marginal willingness-to-accept values were estimated for one hour of informal caregiving. RESULTS: Increased care time per day (hours) and expected duration of caregiving were negatively valued by the participants and reduced willingness to care. Descriptions of the two care dependencies had a significant impact on participants' decisions. Having to provide care to a close relative with cognitive impairments was slightly preferred over caring for a relative with physical impairments. CONCLUSIONS: Our study results show the impact of different factors on the willingness to provide informal care to a close relative. How far the preference weights as well as the high willingness-to-accept values for an hour of caregiving can be explained by the sociodemographic structure of our cohort needs to be investigated by further research. Participants slightly preferred caring for a close relative with cognitive impairments, which might be explained by fear or discomfort with providing personal care to a relative with physical impairments or feelings of sympathy and pity towards people with dementia. Future qualitative research designs can help understand these motivations.

[Informal care and occupation: Factors influencing the willingness to provide care]. / Informelle Pflege und Berufstätigkeit: Einflussfaktoren auf die Bereitschaft.

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. Therefore, a monetary compensation for care is being discussed politically in order to facilitate the reconciliation of work and care. The aim of this study was to investigate whether and under which circumstances a sample of the German population is willing to care for a close relative. A particular focus was placed on the willingness to reduce working hours, the importance of the expected period of caregiving, and monetary compensation. METHODS: A primary data collection was conducted in two modes using a questionnaire. A self-completion postal survey was sent out via the AOK Lower Saxony and complemented with an online survey. Data was analysed descriptively and using logistic regression. RESULTS: 543 participants were included. 90% of the sample surveyed was willing to provide care for a close relative, with the majority stating that their willingness depended on various factors: both the health status and the person of the family member needing care had the greatest influence. 34% of the employed respondents were not willing to reduce their working hours, mostly for financial reasons. DISCUSSION AND CONCLUSION: Many older adults want to stay in their homes for as long as possible. Thus, the willingness to provide and take over the role of informal caregiver is and will remain a central pillar of the German care system. Negotiating between informal caregiving and professional activities often creates a substantial burden. For people from lower income households monetary compensation might enhance their willingness to provide informal care. However, in order to increase the willingness to engage in informal care of people from different backgrounds and life stages, flexible approaches are needed that go beyond monetary compensation.

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. The self-complete postal survey was disseminated to a random sample of the German general population in Lower Saxony. Data cleansing resulted in a final sample size of 280 participants. A conditional logit and a latent class model were estimated. All attributes were judged as highly relevant by the respondents. The results revealed that an increase in the care hours per day had the greatest negative impact overall on the willingness to provide informal care in our sample. The marginal willingness-to-accept for 1 h of informal care was €14.54 when having to provide informal care for 8 h in reference to 2 h per day. This value is considerably higher than the national minimum wage of €9.82. A three-class latent class model revealed preference heterogeneity. While a monetary compensation is often discussed to increase the willingness and availability of informal care in a country, our results show that this statement could not be generalized within our entire sample.

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. Two independent researchers judged the eligibility of studies. The final number of included studies was 66, conducted in 19 different countries. Studies were systematized according to their content focus as well as the survey method used. Irrespective of the heterogeneity of studies with respect to research focus, study population, sample size and study design, some consistent findings emerged. When presented with a set of long-term care options, the majority of study participants preferred to "age in place" and make use of informal or home-based care. With increasing severity of physical and cognitive impairments, preferences shifted toward the exclusive use of formal care. Next to the severity of care needs, the influence on preferences of a range of other independent variables such as income, family status and education were tested; however, none showed consistent effects across all studies. The inclusion of choice-based elicitation techniques provides an impression of how studies operationalized long-term care and measured preferences. Future research should investigate how preferences might change over time and generations as well as people's willingness and realistic capabilities of providing care.

SN2 versus SN2' Competition.

We have quantum chemically explored the competition between the SN2 and SN2' pathways for X- + H2C═CHCH2Y (X, Y = F, Cl, Br, I) using a combined relativistic density functional theory and coupled-cluster theory approach. Bimolecular nucleophilic substitution reactions at allylic systems, i.e., Cγ═Cß-Cα-Y, bearing a leaving-group at the α-position, proceed either via a direct attack at the α-carbon (SN2) or via an attack at the γ-carbon, involving a concerted allylic rearrangement (SN2'), in both cases leading to the expulsion of the leaving-group. Herein, we provide a physically sound model to rationalize under which circumstances a nucleophile will follow either the aliphatic SN2 or allylic SN2' pathway. Our activation strain analyses expose the underlying physical factors that steer the SN2/SN2' competition and, again, demonstrate that the concepts of a reaction's "characteristic distortivity" and "transition state acidity" provide explanations and design tools for understanding and predicting reactivity trends in organic synthesis.

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. METHODS: The research is a multi-perspective, prospective, observational study following a mixed-methods approach across three study phases. In phase 1a, qualitative expert interviews will be conducted to capture the facility-related characteristics of palliative day-care clinics and day hospices in Germany; the results will feed into a questionnaire sent to all such institutions identified nationwide. In phase 1b, a questionnaire will be sent to local statutory health insurance providers, to gain insight into their contracts and accounting and remuneration models. In phase 2a, a service preference survey will be conducted with patients and family caregivers. In phase 2b, semi-structured interviews with management staff will explore the factors that promote and hinder the provision of service. In phase 2c, the external perspective will be surveyed via focus groups with local actors involved in hospice and palliative care. In phase 3a, focus groups with representatives from relevant areas will be conducted to develop recommendations. Finally, in phase 3b, recommendations will be agreed upon through a Delphi survey. DISCUSSION: The empirically developed recommendations should enable the establishment and development of day hospices and palliative day-care clinics in Germany to be better managed, more oriented to actual demand, and more effectively integrated into wider health care services. Importantly, the findings are expected to optimize the overall development of hospice and palliative care services. TRIAL REGISTRATION: The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00021446; date of registration: April 20, 2020). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.

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. RESULTS: In total, three main categories (willingness to provide care, willingness to receive care and information as preparation) with several sub-categories were identified during the content analysis. While almost all interviewees were willing to provide care for close family members, most were hesitant to receive informal care. Other factors such as the available housing space, flexible working hours and the proximity of relatives were essential indicators of a person's preparedness to provide informal care. It is, however, unclear if care preferences change over time and generations. Six out of 12 informal caregivers and nine out of 14 care consultants also reported an information gap. Because they do not possess adequate information, informal caregivers do not seek help until it is too late and they experience high physical and mental strain. Despite the increased efforts of care consultants in recent years, trying to inform caregivers earlier was seen as almost impossible. CONCLUSIONS: The very negative perception of caregiving as a burden was a reoccurring theme throughout all interviews and influenced people's willingness to receive care as well as seeking timely information. Despite recent political efforts to strengthen home-based care in Germany, it remains unclear whether political efforts will be effective in changing individuals' perceptions of informal caregiving and their willingness to be better prepared for the highly likely scenario of having to care for a close relative or becoming care dependent at a later stage in life.

["But you often come unstuck on particularities" - Care consultants on legislation amendments and the challenges of their job: A qualitative investigation]. / "Aber vielfach scheitert man dann an Besonderheiten" ­ Pflegeberater über Gesetzesänderungen und die Herausforderungen ihrer Arbeit: Eine qualitative Untersuchung.

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. All interviews were transcribed verbatim and a qualitative content analysis was performed. RESULTS: Care consultants perceived tangible improvements with regard to the scope of benefits as a direct result of recent legislation changes. The use of these benefits, however, is limited due to an insufficient growth of care infrastructure. Particularly frequent legislation changes, unclear responsibilities and dissimilar regulations between federal states were seen as challenges. DISCUSSION AND CONCLUSION: Complex dependencies within the German nursing care system were identified and the necessity for a public discourse on themes such as self-responsibility, equity and a comprehensive (nationwide) care supply was underlined. A central information platform was proposed in order to concretely improve information about services available locally.

Evidence for interaction between genetic liability and childhood trauma in the development of psychotic symptoms.

PURPOSE: Whilst childhood trauma (CT) is a known risk factor across the spectrum of psychosis expression, little is known about possible interplay with genetic liability. METHODS: The TwinssCan Study collected data in general population twins, focussing on expression of psychosis at the level of subthreshold psychotic experiences. A multilevel mixed-effects linear regression analysis was performed including 745 subjects to assess the interaction between genetic liability and CT. The Symptom Checklist-90 (SCL-90-R) score of the co-twin was used as an indirect measure of genetic liability to psychopathology, while the Childhood Trauma Questionnaire Short-Form (CTQ-SF) was used to assess CT in the domains of physical, emotional and sexual abuse, as well as physical and emotional neglect. The Community Assessment of Psychic Experience (CAPE) questionnaire was used to phenotypically characterize psychosis expression. RESULTS: In the model using the CAPE total score, the interaction between CT and genetic liability was close to statistical significance (χ2 = 5.6, df = 2, p = 0.06). Analyses of CAPE subscales revealed a significant interaction between CT and genetic liability (χ2 = 8.8, df = 2, p = 0.012) for the CAPE-negative symptoms subscale, but not for the other two subscales (i.e. positive and depressive). CONCLUSION: The results suggest that the impact of CT on subthreshold expression of psychosis, particularly in the negative subdomain, may be larger in the co-presence of significant genetic liability for psychopathology.

[Health Co-benefits of climate change mitigation measures-how houeseholds and policy makers can benefit]. / Gesundheitliche Vorteile von Klimaschutzmaßnahmen ­ wie Haushalte und Politik profitieren können.

In discussions on climate change and health, negative impacts of climate change usually dominate the discussion. However to motivate households and policy makers to climate action, one should also point out the health opportunities of climate change mitigation measures.We draw on the current literature to present the concept of health co-benefits of climate change mitigation measures (A). In the empirical part of the paper we first use a quantitative and qualitative text analysis to look at the link of climate change and health in EU legislation from 1990-2015 (B). We then describe results from qualitative in-depth interviews with 18 German households, in which we investigate how knowledge of health co-benefits influences households in implementing climate action. The interviews were part of a bigger European mixed-methods study.A: From the household perspective, we define direct health co-benefits, which can be influenced and experienced by an individual, and indirect health co-benefits, which are dependent on societal action. B: Health is mentioned in EU climate change legislation. However, EU legislation only touches upon health co-benefits in general and doesn't mention direct health co-benefits at all. C: Households consider health co-benefits in their lifestyle decisions. Yet, as there are many determinants of lifestyle, information on health co-benefits alone does not seem to be sufficient to trigger climate friendly and healthy behavior.First, synergies between health and climate change mitigation need to be recognized on a political level. Then, effective intersectoral policies need to be implemented to support households on multiple levels in implementing healthy and climate-friendly lifestyles.

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. The subsequent rise in demand for long-term care facilities is unlikely to be met by the current care structures and available staff. Additionally, many Germans still prefer to be cared for at home for as long as possible. In light of recent changes, such as increasing employment rates of women and growing geographical distances of family members, informal caregiving becomes more challenging in the future. The aim of this study is to explore preferences for informal and formal care services in the German general population, as well as the expected willingness of providing elderly care. METHODS AND ANALYSIS: A mixed-methods approach will be used to explore care preferences and expected willingness of providing elderly care in the German general population. A systematic literature review will be performed to provide an overview of the current academic literature on the topic. Qualitative interviews will be conducted with informal caregivers, care consultants and people with no prior caregiving experiences. A labelled discrete choice experiment will be designed and conducted to quantitatively measure the preferences for informal and formal care in the German general population. People between 18 and 65 years of age will be recruited in cooperation with a (regional) statutory health insurance (AOK Lower Saxony). A mixed multinomial logit regression model and a latent class finite mixture model will be used to analyse the data and test for subgroup differences in care preferences. ETHICS AND DISSEMINATION: The study has been approved by the Committee for Clinical Ethics of the Medical School in Hannover. Data will be treated confidential to ensure the participants' anonymity. The results will be discussed and disseminated to relevant stakeholders in the field. TRIAL REGISTRATION NUMBER: DRKS00012266.

The interaction between cannabis use and the Val158Met polymorphism of the COMT gene in psychosis: A transdiagnostic meta - analysis.

BACKGROUND: Neither environmental nor genetic factors are sufficient to predict the transdiagnostic expression of psychosis. Therefore, analysis of gene-environment interactions may be productive. OBJECTIVE: A meta-analysis was performed using papers investigating the interaction between cannabis use and catechol-O-methyl transferase (COMT) polymorphism Val158Met (COMTVal158Met). DATA SOURCES: PubMed, Embase, PsychInfo. STUDY ELIGIBILITY CRITERIA: All observational studies assessing the interaction between COMTVal158Met and cannabis with any psychosis or psychotic symptoms measure as an outcome. STUDY APPRAISAL AND SYNTHESIS METHODS: A meta-analysis was performed using the Meta-analysis of Observational Studies in Epidemiology guidelines and forest plots were generated. Thirteen articles met the selection criteria: 7 clinical studies using a case-only design, 3 clinical studies with a dichotomous outcome, and 3 studies analysing a continuous outcome of psychotic symptoms below the threshold of psychotic disorder. The three study types were analysed separately. Validity of the included studies was assessed using "A Cochrane Risk of Bias Assessment Tool: for Non-Randomized Studies of Interventions". RESULTS: For case-only studies, a significant interaction was found between cannabis use and COMTVal158Met, with an OR of 1.45 (95% Confidence Interval = 1.05-2.00; Met/Met as the risk genotype). However, there was no evidence for interaction in either the studies including dichotomous outcomes (B = -0.51, 95% Confidence Interval -1.72, 0.70) or the studies including continuous outcomes (B = -0.04 95% Confidence Interval -0.16-0.08). LIMITATION: A substantial part of the included studies used the case-only design, which has lower validity and tends to overestimate true effects. CONCLUSION: The interaction term between cannabis use and COMTVal158Met was only statistically significant in the case-only studies, but not in studies using other clinical or non-clinical psychosis outcomes. Future additional high quality studies might change current perspectives, yet currently evidence for the interaction remains unconvincing.

A systematic review on the use of healthcare services by undocumented migrants in Europe.

BACKGROUND: Undocumented migrants face particular challenges in accessing healthcare services in many European countries. The aim of this study was to systematically review the academic literature on the utilization of healthcare services by undocumented migrants in Europe. METHODS: The databases Embase, Medline, Global Health and Cinahl Plus were searched systematically to identify quantitative, qualitative and mixed methods studies published in 2007-2017. RESULTS: A total of 908 articles were retrieved. Deletion of duplicates left 531. After screening titles, abstracts and full texts according to pre-defined inclusion and exclusion criteria, 29 articles were included in the review. Overall, quantitative studies showed an underutilization of different types of healthcare services by undocumented migrants. Qualitative studies reported that, even when care was received, it was often inadequate or insufficient, and that many undocumented migrants were unfamiliar with their entitlements and faced barriers in utilizing healthcare services. CONCLUSIONS: Although it is difficult to generalize findings from the included studies due to methodological differences, they provide further evidence that undocumented migrants in Europe face particular problems in utilizing healthcare services.

A systematic literature review on the use and outcomes of maternal and child healthcare services by undocumented migrants in Europe.

Background: Undocumented migrants, in particular pregnant women and their newborns, constitute a particularly vulnerable group of migrants. The aim of this study was to systematically review the academic literature on the use and outcomes of maternal and child healthcare by undocumented migrants in the European Union (EU) and European Free Trade Association (EFTA) countries. Methods: The databases, MEDLINE, Embase, CINAHL Plus, Global Health and Popline were searched for the period 2007 to 2017. Two independent reviewers judged the eligibility of studies. The final number of included studies was 33. Results: The results of quantitative, qualitative and mixed methods studies were analysed separately due to their differences in study design, sample size and quality. Overall, the quantitative studies found that undocumented women underutilised essential maternal and child healthcare services, and experienced worse health outcomes. Qualitative studies supported these results, indicating that undocumented migrants were hesitant to use services due to a lack of knowledge and fear of deportation. Studies included in the review covered 10 of 32 EU or EFTA countries, making a European comparison impossible. Conclusions: Despite major methodological differences between included studies, the results of this review indicate that the status of undocumented migrants exacerbates known health risks and hampers service use.