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.

Expert Perspectives on the Additional Benefit of Day Hospices and Palliative Day Care Clinics in Germany: A Qualitative Approach.

Background: In Germany, hospice and palliative care is well covered through inpatient, outpatient, and home-based care services. It is unknown if, and to what extent, there is a need for additional day care services to meet the specific needs of patients and caregivers. Methods: Two day hospices and two palliative day care clinics were selected. In the first step, two managers from each facility (n = 8) were interviewed by telephone, using a semi-structured interview guide. In the second step, four focus groups were conducted, each with three to seven representatives of hospice and palliative care from the facilities' hospice and palliative care networks. Interviews and focus groups were audio recorded, transcribed verbatim and analyzed using qualitative content analysis. Results: The interviewed experts perceived day care services as providing additional patient and caregiver benefits. Specifically, the services were perceived to meet patient needs for social interaction and bundled treatments, especially for patients who did not fit into inpatient settings (due to, e.g., their young age or a lack of desire for inpatient admission). The services were also perceived to meet caregiver needs for support, providing short-term relief for the home care situation. Conclusions: The results suggest that inpatient, outpatient, and home-based hospice and palliative care services do not meet the palliative care needs of all patients. Although the population that is most likely to benefit from day care services is assumed to be relatively small, such services may meet the needs of certain patient groups more effectively than other forms of care.

[Identification of regional hospice and palliative care networks in Germany - Results of a multi-method survey]. / Identifikation regionaler Hospiz- und Palliativnetzwerke in Deutschland ­ Ergebnisse einer multimethodischen Bestandserhebung.

INTRODUCTION: In the course of the implementation of the German Healthcare Development Act [Gesundheitsversorgungsweiterentwicklungsgesetz] of 2021, a funding structure according to sect. 39d of the Social Code Book V [SGB V] was established to promote regional hospice and palliative care networks (RHPN). The funded networks are expected to support the multiprofessional cooperation of hospice and palliative care providers at the structural level. It is still unclear how many existing and newly established network structures are eligible for funding according to sect. 39d SGB V and where these network structures are located regionally. The proportion of actually funded networks is also unknown. METHODS: Between January and March 2023, network structures of hospice and palliative care were identified in a tripartite, multi-method survey procedure, consisting of a) research of databases, literature, and internet; b) open quantitative online-survey via SoSciSurvey software, and c) telephone survey of federal offices of health insurers. The data were first documented separately. Then, the research and survey data were combined and analysed via descriptive statistics using SPSS. RESULTS: Based on the aggregated data from the literature-, database- and internet research and the online survey, n=308 network structures of hospice and palliative care could be identified, of which n=37 have applied for network funding according to sect. 39d SGB V. In the survey period, n=47 applications for network funding according to sect. 39d SGB V were submitted to the health insurance funds. There is a high density of network structures in the northern, southern and western federal states, while there are only a few networks in the eastern states. According to the online-survey, 56% (n=136) of all the identified network structures with known sponsorship are organised by providers of specialised outpatient palliative care. 47% (n=29) of the networks with funding interest are organised as independent structures. Of the network structures with known funding status, 18% (n=26) plan to apply for funding according to sect. 39d SGB V in 2024 for the first time. DISCUSSION: There are numerous network structures in hospice and palliative care, but they are differently distributed among the German federal states. The multi-method survey was able to provide a first nation-wide inventory of network structures as well as an assessment of networks with funding interest according to sect. 39 SGB V. A clear distinction between general network structures and structural networks according to sect. 39d SGB V is a challenge. In the next years the number of funding applications is expected to rise. CONCLUSION: The identification of existing and funded network structures of hospice and palliative care in Germany can be a starting point for a deeper analysis of the structure and the activities of the networks. A quality assessment tool that takes into account both the heterogeneity of the networks and the different dimensions of networking would be helpful.

Cost-effectiveness of a specialist palliative care nurse-patient consultation followed by an interprofessional case conference for patients with non-oncological palliative care needs: results of the KOPAL trial.

BACKGROUND: Worldwide, progressive chronic, non-malignant diseases are highly prevalent. Especially with increasing age, they are characterised by high hospitalisation rates and high healthcare costs. Improved interprofessional collaboration between general practitioners (GPs) and specialist palliative home care (SPHC) teams might reduce hospitalisation while improving symptoms and quality of life, or preventing them from deterioration. The aim of this study was to examine the cost-effectiveness of a newly developed intervention in patients with advanced chronic, non-malignant diseases consisting of a structured palliative care nurse-patient consultation followed by an interprofessional telephone case conference. METHODS: The analysis was based on data from 172 participants of the KOPAL multi-centre, cluster randomised controlled trial. Patients with advanced congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), or dementia were randomised into intervention group (IG) and control group (CG, usual care). Cost-effectiveness was examined over 48 weeks from a societal and healthcare payer's perspective. Effects were quantified as quality-adjusted life years (QALYs, EQ-5D-5L). Incremental cost-effectiveness ratios were calculated and cost-effectiveness acceptability curves were constructed. RESULTS: Baseline imbalances in costs and effects could be observed between IG and CG. After adjusting for these imbalances and compared to the CG, mean costs in the IG were non-significantly higher from a societal and lower from a payer's perspective. On the effect side, the IG had marginally lower mean QALYs. The results were characterized by high statistical uncertainty, indicated by large confidence intervals for the cost and effect differences between groups and probabilities of cost-effectiveness between 18% and 65%, depending on the perspective and willingness-to-pay. CONCLUSIONS: Based on the results of this study, the cost-effectiveness of the KOPAL intervention was uncertain. The results highlighted (methodological) challenges of economic evaluations in patients with chronic, non-malignant diseases related to sample size, heterogeneity of participants, and the way the intervention effectiveness is typically captured in economic evaluations.

[A regional comparison of outcomes quality and costs of general and specialized palliative care in Germany: a claims data analysis]. / Ergebnisqualität und Kosten der allgemeinen und spezialisierten Palliativversorgung in Deutschland im regionalen Vergleich: eine GKV-Routinedatenstudie.

BACKGROUND: The main framework conditions for palliative care are set at the regional level. The scope of the forms of care used (outpatient, inpatient, general, specialized) varies widely. What is the quality of outcomes achieved by the palliative care provided on a federal states level? What are the associated costs of care? METHOD: Retrospective observational study using BARMER claims data from 145,372 individuals who died between 2016 and 2019 and had palliative care in the last year of life. Regional comparison with regard to the following outcomes: proportion of palliative care patients who died in the hospital, potentially burdensome care in the last 30 days of life (ambulance calls, [intensive care] hospitalizations, chemotherapy, feeding tubes, parenteral nutrition), total cost of care (last three months), cost of palliative care (last year), and cost-effectiveness ratios. Calculation of patient/resident characteristic adjusted rates, costs, and ratios. RESULTS: Federal states vary significantly with respect to the outcomes (also adjusted) of palliative care. Palliative care costs vary widely, most strongly for specialized outpatient palliative care (SAPV). Across all indicators and the cost-effectiveness ratio of total cost of care to at-home deaths, Westphalia-Lippe shows favorable results. CONCLUSION: Regions with better quality and more favorable cost (ratios) can provide guidance for other regions. The extent to which the new federal SAPV agreement can incorporate the empirical findings should be reviewed. Patient-relevant outcome parameters should be given greater weight than parameters aiming at structures of care.

Status exploration and analysis of regional hospice and palliative care networks in Germany: A protocol for a mixed-methods study.

BACKGROUND: Multi-professional cooperation between healthcare providers is a key quality criterion of hospice and palliative care. While hospice and palliative care networks can support cooperation on a local level, opportunities for wider cooperation through the establishment and development of regional hospice and palliative care networks in Germany have not yet been explored systematically. AIMS: The HOPAN study aims at: (1) identifying regional hospice and palliative care networks in Germany, (2) analysing these networks using an adapted quality assessment tool, and (3) proposing setting-sensitive recommendations for network development and exploring the benefits of these recommendations. METHODS: HOPAN is a prospective, observational, mixed-methods study comprising three work packages (WPs). In WP1, the stock of regional hospice and palliative care networks in Germany will be identified via database, literature, and internet research. In WP2a, focus groups will be conducted to adapt an existing maturity model for healthcare networks to regional hospice and palliative care networks. In WP2b, a questionnaire will be sent to each identified regional hospice and palliative care network to gain insight into their structure and status of development. In WP2c, group discussions will be conducted to develop setting-sensitive recommendations for these networks. Finally, in WP3, these recommendations will be sent to all participating hospice and palliative care networks, and the benefits of the recommendations will be evaluated via a questionnaire. DISCUSSION: Empirically developed setting-sensitive recommendations should enable the systematic establishment and management of regional hospice and palliative care networks in Germany, considering the specific needs and potential of each network. The study findings are expected to improve 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° DRKS00030629; date of registration: 02 November 2022). 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.

[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.

Structured implementation of the Supportive and Palliative Care Indicators Tool in general practice - A prospective interventional study with follow-up.

BACKGROUND: General practitioners (GPs) play a key role in the provision of primary palliative care (PC). The identification of patients who might benefit from PC and the timely initiation of patient-centred PC measures at the end of life are essential, yet challenging. Although different tools exist to support these key tasks, a structured approach is often missing. OBJECTIVE: The study aimed at implementing the German version of the Supportive and Palliative Care Indicators Tool (SPICT-DE™) in general practices, following a structured and regional approach, in order to evaluate the effects of this tool on the identification of patients with potential PC needs and the initiation of patient-centred PC measures. METHODS: The intervention of this mixed-methods study comprised a standardised training of 52 GPs from 34 general practices in two counties in Lower Saxony, Germany, on the use of the SPICT-DE™. The SPICT-DE™ is a clinical tool which supports the identification of patients with potential PC needs. Subsequently, over a period of 12 months, GPs applied the SPICT-DE™ in daily practice with adult patients with chronic, progressive diseases, and completed a follow-up survey 6 months after the initial patient assessment. The outcome parameters were alterations in the patient's clinical situation, and the type and number of initiated patient-centred PC measures during the follow-up interval. Additionally, 12 months after the standardised training, GPs provided feedback on their application of the SPICT-DE™. RESULTS: A total of 43 GPs (n = 15 female, median age 53 years) out of an initial sample of 52 trained GPs assessed 580 patients (n = 345 female, median age 84 years) with mainly cardiovascular (47%) and cancer (33%) diseases. Follow-up of 412 patients revealed that 231 (56%) experienced at least one critical incident in their disease progression (e.g. acute crisis), 151 (37%) had at least one hospital admission, and 141 (34%) died. A review of current treatment/medication (76%) and a clarification of treatment goals (53%) were the most frequently initiated patient-centred PC measures. The majority of GPs deemed the SPICT-DE™ practical (85%) and stated an intention to continue applying the tool in daily practice (66%). CONCLUSIONS: The SPICT-DE™ is a practical tool that supports the identification of patients at risk of deterioration or dying and promotes the initiation of patient-centred PC measures. TRIAL REGISTRATION: The study was registered in the German Clinical Trials Register (N° DRKS00015108; 22/01/2019).

Effectiveness of a specialist palliative home care nurse-patient consultation followed by an interprofessional telephone case conference compared with usual care among patients with non-oncological palliative care needs: protocol for the multicentre KOPAL cluster-randomised controlled trial.

INTRODUCTION: Progressive chronic, non-malignant diseases (CNMD) like congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD) and dementia are of growing relevance in primary care. Most of these patients suffer from severe symptoms, reduced quality of life and increased numbers of hospitalisations. Outpatient palliative care can help to reduce hospitalisation rate by up to 50%. Due to the complex medical conditions and prognostic uncertainty of the course of CNMD, early interprofessional care planning among general practitioners who provide general palliative care and specialist palliative home care (SPHC) teams seems mandatory. The KOPAL study (a concept for strenghtening interprofessional collaboration for patients with palliative care needs) will test the effectiveness of a SPHC nurse-patient consultation followed by an interprofessional telephone case conference. METHODS AND ANALYSIS: Multicentre two-arm cluster randomised controlled trial KOPAL with usual care as control arm. The study is located in Northern Germany and aims to recruit 616 patients in 56 GP practices (because of pandemic reasons reduced to 191 participants). Randomisation will take place on GP practice level immediately after inclusion (intervention group/control group). Allocation concealment is carried out on confirmation of participation. Patients diagnosed with CHF (New York Heart Association (NYHA) classification 3-4), COPD (Global Initiative for Chronic Obstructive Lung Disease (GOLD) stage classification 3-4, group D) or dementia GDS stage 4 or above). Primary outcome is a reduced hospital admission within 48 weeks after baseline, secondary outcomes include symptom burden, quality of life and health costs. The primary analysis will follow the intention-to-treat principle. Intervention will be evaluated after the observation period using qualitative methods. ETHICS AND DISSEMINATION: The responsible ethics committees of the cooperating centres approved the study. All steps of data collection, quality assurance and data analysis will continuously be monitored. The concept of KOPAL could serve as a blueprint for other regions and meet the challenges of geographical equity in end-of-life care. TRIAL REGISTRATION NUMBER: DRKS00017795; German Clinical Trials Register.

[Implementing an intermediate level of outpatient palliative care in Germany: Experiences and views of specialised outpatient palliative care teams]. / Implementierung der "Besonders qualifizierten und koordinierten palliativmedizinischen Versorgung" (BQKPMV) ­ Erfahrungen und Sichtweisen von SAPV-Teams.

INTRODUCTION: In the course of the implementation of the German Hospice and Palliative Care Act of 2015, an agreement was reached to establish an intermediate level of outpatient palliative care (BQKPMV) in Germany. By its degree of specialization, this form of care is located between generalist and specialist outpatient palliative care (AAPV/SAPV). It is still unclear which experiences the SAPV teams have gained with the approach of BQKPMV and how it affects their care routines. METHODS: Between May and August 2021, the project team developed and tested a questionnaire for SAPV teams about their experiences with and views on BQKPMV as a care approach at the interface to SAPV. In September 2021, all 58 teams providing SAPV in Lower Saxony were invited to participate. The information provided by the participants was analyzed using descriptive statistics and frequency analyses. RESULTS: With 52 participants (78% female; mean age of 50 years), a participation rate of 89.7 % was achieved. Twenty-eight participants indicated that they were aware of BQKPMV and its content, and 10 had received a request for cooperation under the BQKPMV program. Fifty percent of these 10 requests (n = 5) led to a cooperation agreement. The following questions were answered only by participants who were familiar with the content of BQKPMV (N = 28). For a majority of 15 participants, the BQKPMV has (rather) no part in day-to-day care in SAPV. From the participants' point of view, BQKPMV largely fails to supplement the existing regulations of SAPV in a meaningful way (n = 14 is not [likely] true), to promote smooth transition between the forms of outpatient palliative care (n = 13 is not [likely] true) and to facilitate communication among the professionals involved (n = 13 is not [likely] true). DISCUSSION: These results show that the participating SAPV teams know little about BQKPMV and that there has been little cooperation at the interface between SAPV and BQKPMV. In day-to-day care, there is a clear separation between SAPV and BQKPMV provided by general practitioners, which corresponds with the proposition of the legislator by excluding simultaneous provision of both forms of care. The close cooperation between general practitioners and SAPV teams, which is also required under the agreement regarding BQKPMV, leads to challenges in day-to-day care. CONCLUSION: It remains unclear whether and to what extent the close cooperation envisaged in the framework of BQKPMV can be put into practice at the interface between general practitioners and SAPV teams in their daily routines. Practical recommendations for advancing BQKPMV are needed, which, for example, address the exclusion of the simultaneous provision of both forms of care. Further developments of BQKPMV should aim at establishing a framework in which the tasks and duties of health care provision are distributed and remunerated in accordance with the competencies and resources of health care providers.

Providing palliative care for residents in LTC facilities: an analysis of routine data of LTC facilities in Lower Saxony, Germany.

BACKGROUND: Demographic trends show an increasing number of elderly people and thus a growing need for palliative care (PC). Such care is increasingly being provided by long-term care (LTC) facilities. The present study aimed at exploring PC indicators of residents at LTC facilities belonging to a non-profit provider in Lower Saxony, Germany, in order to identify potential improvements. METHODS: A descriptive cross-sectional study was conducted, drawing on routine nursing chart data. Structural data from 16 participating LTC facilities and the care data of all residents who died in 2019 (N = 471) were collected anonymously between March and May 2020. Based on key literature on quality indicators of PC in LTC facilities in Germany, a structured survey was developed by a multidisciplinary research team. The descriptive, comparative and inferential data analysis was conducted using the SPSS software package. RESULTS: In total, the complete records of 363 (77%) residents who died in the participating LTC facilities in 2019 were retrieved. The records reflected that 45% of the residents had been hospitalized at least once during the last 6 months of their lives, and 19% had died in hospital. Advance care planning (ACP) consultation was offered to 168 (46%) residents, and 64 (38%) declined this offer. A written advance directive was available for 47% of the residents. A specialized PC team and hospice service volunteers were involved in caring for 6% and 14% of the residents, respectively. Cancer patients received support from external services significantly more frequently (p < .001) than did non-cancer patients. Differences emerged in the distribution of PC indicators between LTC facilities. Facilities that have more PC trained staff offered more ACP, supported by more specialized PC teams and hospice services, and had fewer hospitalizations. In addition, more volunteer hospice services were offered in urban facilities. CONCLUSIONS: Overall, a rather positive picture of PC in participating LTC facilities in Germany emerged, although there were differences in the expression of certain indicators between facilities. ACP consultation, volunteer hospice services, and hospital admissions appeared to be superior in LTC facilities with more trained PC staff. Therefore, PC training for staff should be further promoted.

Long-distance caregiving at the end of life: a protocol for an exploratory qualitative study in Germany.

BACKGROUND: Of the approximately 4.7 million people in Germany caring for a relative, many live at a geographical distance from their loved one. The provision of remote care to a terminally ill patient is associated with specific challenges and burdens. In the German context, research is lacking on the specific experiences and needs of caregivers in end-of-life situations who are geographically distanced from their relative. Thus, the overarching goal of the proposed study is to detail the specifics of long-distance caregiving at the end of life in Germany, determining the role played by physical distance in shaping end-of-life caregiving and identifying the needs of long-distance caregivers in this situation. METHODS: The exploratory qualitative study will be guided by an inductive logic, drawing on one-time semi-structured interviews. To uncover the multiplicity of caregiving experiences, long-distance caregivers of both patients receiving early palliative care and patients at a very advanced stage of disease will be included. The study will be divided into five phases: (1) preparation and pretest, (2) data collection and primary analysis, (3) data analysis and interpretation, (4) advisory board workshop and (5) conclusions and recommendations. DISCUSSION: The study will aim at generating valuable insight regarding the experiences and needs of family caregivers of end-of-life patients. This is particularly relevant, given that families are becoming increasingly geographically dispersed. As this trend continues, it will challenge traditional models of family care and shed light on novel caregiving issues that will need to be addressed through social and health policy. TRIAL REGISTRATION: The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00024164; date of registration: January 25, 2021), and is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.

Quality of end-of-life care in general practice - a pre-post comparison of a two-tiered intervention.

BACKGROUND: General practitioners (GPs) play a crucial role in the provision of end-of-life care (EoLC). The present study aimed at comparing the quality of GPs' EoLC before and after an intervention involving a clinical decision aid and a public campaign. METHODS: The study was part of the larger interventional study 'Optimal care at the end of life' (OPAL) (Innovation Fund, Grant No. 01VSF17028). The intervention lasted 12 months and comprised two components: (1) implementation of the Supportive and Palliative Care Indicators Tool (SPICT-DE™) in general practice and (2) a public campaign in two German counties to inform and connect regional health care providers and stakeholders in EoLC. Participating GPs completed the General Practice End of Life Care Index (GP-EoLC-I) pre- (t0) and post- (t1) intervention. The GP-EoLC-I (25 items, score range: 14-40) is a self-assessment questionnaire that measures the quality of GPs' EoLC. It includes two subscales: practice organisation and clinical practice. Data were analysed descriptively, and a paired t-test was applied for the pre-post comparison. RESULTS: Forty-five GPs (female: 29%, median age: 57 years) from 33 general practices participated in the intervention and took part in the survey at both times of measurement (t0 and t1). The mean GP-EoLC-I score (t0 = 27.9; t1 = 29.8) increased significantly by 1.9 points between t0 and t1 (t(44) = - 3.0; p = 0.005). Scores on the practice organisation subscale (t0 = 6.9; t1 = 7.6) remained almost similar (t(44) = -2.0; p = 0.057), whereas those of the clinical practice subscale (t0 = 21.0; t1 = 22.2) changed significantly between t0 and t1 (t(44) = -2.6; p = 0.011). In particular, items regarding the record of care plans, patients' preferred place of care at the end of life and patients' preferred place of death, as well as the routine documentation of impending death, changed positively. CONCLUSIONS: GPs' self-assessed quality of EoLC seemed to improve after a regional intervention that involved both the implementation of the SPICT-DE™ in daily practice and a public campaign. In particular, improvement related to the domains of care planning and documentation. TRIAL REGISTRATION: The study was registered in the German Clinical Trials Register ( DRKS00015108 ; 22/01/2019).

Improving primary palliative care - a Delphi consensus study on measures for general practice in Germany.

BACKGROUND: The majority of severely ill and dying people in Germany can be administered primary palliative care (PPC) by general practitioners (GP). However, the current provision of PPC does not match the needs of the population. Although several public health strategies aim at strengthening the role of GPs in PPC provision, it remains challenging for GP teams to integrate PPC into their daily routines. AIM: A Delphi study with GPs was conducted to achieve consensus on specific measures for improving the integration of PPC into everyday GP practice. METHODS: The study is part of the junior research project "Primary Palliative Care in General Practice" (ALLPRAX). After having developed, tested and evaluated 26 practical measures for GP practices to improve their PPC, a Delphi consensus study among GPs took place. In 2020, 569 GPs were asked to rate the relevance and feasibility of the measures on a 4-point Likert scale via an anonymous online questionnaire. Consensus was defined as a sum percentage of 'strongly agree' and 'somewhat agree' responses ≥75% after two rounds. Between these rounds, measures that were not consented in the first round were adapted in light of respondents' free text comments and suggestions. RESULTS: The response rate was 11.3% in round 1 (n = 64) and 53.1% in round 2 (n = 34). From the initial n = 26 measures, n = 20 measures achieved consensus and were included in the final intervention package. The consented measures pertained to four main topics: advance care planning with patients, consulting and informing patients and family caregivers, GP office organisation and continuing education. N = 6 measures did not achieve consensus, predominantly due to time and workload constraints. CONCLUSION: The consented measures provide valuable support to improve the provision of PPC by GPs. They can be used freely and flexibly, according to the needs of individual GP teams, and are thus suitable for implementation nationwide. TRIAL REGISTRATION: The study was registered in the German Clinical Trials Register (Registration N° DRKS00011821; 4 December 2017; https://apps.who.int/trialsearch/ ) and the German Register of Health Care Research (Registration N° VfD_ALLPRAX_16_003817; 30 March 2017).

[End-of-life care in a rural small-town region in Lower Saxony: a retrospective cross-sectional analysis based on routinely collected general practice data]. / Versorgung von Menschen am Lebensende in einer ländlich-kleinstädtischen Region Niedersachsens: eine retrospektive Querschnittsanalyse auf Basis hausärztlicher Routinedaten.

INTRODUCTION: Up to 90% of people at the end of life are in need of palliative care. The majority can be cared for within general outpatient palliative care (AAPV) by general practitioners. Previous studies have described outpatient palliative care to fall short behind the estimated needs and to be initiated rather late in the health care process. Yet, little is known about the development of outpatient palliative care in recent years and about the parameters influencing its utilisation. Therefore, this study aimed to investigate the number and time of initiation for AAPV and specialised outpatient palliative care (SAPV) in a rural and small-town region in Lower Saxony on the basis of routinely collected general practice data. Furthermore, this study sought to estimate the influence of various parameters related to patients, practices and physicians on the provision of AAPV and SAPV. METHODS: All general practitioners (n=190) in two counties in Lower Saxony were invited to take part in the project "Optimal care at the end of life - OPAL" (Innovation Fund, 01VSF17028) between autumn 2018 and spring 2019. In the participating practices, clinical data pertaining to patients with statutory health insurance, who had died in the second or third quarter of 2018, were collected in pseudonymised form and analysed using selected indicators for end-of-life care. The number of hospital stays and the provision of AAPV and SAPV were the subject of the descriptive analyses. In order to take the cluster effect of the practices into account, mixed-model analyses were carried out. RESULTS: The data of 279 deceased patients (48% female; median age 82 years) from 31 general practices were analysed. In the last year of life, AAPV was provided for 78 deceased patients (28.0%) with a median onset of 20 days before death. 52 deceased patients (18.6%) received SAPV with a median onset of 28 days before death, respectively. In the last six months of life, 207 deceased patients (74.2%) were hospitalised at least once. The mixed-model analyses showed a greater probability of receiving AAPV (odds ratio (OR)=3.3) or SAPV (OR=3.2) in the last year of life for patients with oncological diseases. It was also shown that GPs with a higher value on the subscale practice organisation billed more AAPV (OR=1.4). DISCUSSION: The number of patients with SAPV is at least equivalent to the estimated needs known from the literature in both selected regions. In contrast, AAPV seems to be provided relatively rarely and rather late in the health care process. Relevant reasons for this may be the lack of concrete criteria for AAPV (e. g., ambiguities and competing codes for billing) as well as prognostic uncertainties of health care providers especially for patients with non-oncological diseases. CONCLUSION: Strategies to further develop end-of-life care should especially strengthen the AAPV provided by general practitioners and focus on patients with non-oncological diseases.

Consensus-based recommendations for psychosocial support measures for parents and adult children at the end of life: results of a Delphi study in Germany.

PURPOSE: The availability of psychosocial support measures has a significant impact on the quality of life of terminally ill and dying patients and the burden experienced by their relatives. To date, no intervention has specifically focused on promoting interaction within the dyads of the following: (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children. A national Delphi study was conducted to provide appropriate recommendations for dyadic psychosocial support measures. METHODS: Recommendations were formulated from qualitative interview data on the experiences and wishes of patients and family caregivers within these two dyads. Experts from palliative and hospice care providers rated the relevance and feasibility of 21 recommendations on two 4-point Likert-type scales, respectively. Additional suggestions for improvement were captured via free text fields. Individual items were considered consented when ≥ 80% of participants scored 1 (strongly agree) or 2 (somewhat agree) regarding both relevance and feasibility. RESULTS: A total of 27 experts (35% response rate) completed two Delphi rounds. Following the first round, 13 recommendations were adjusted according to participants' comments. After the second round, consensus was achieved for all 21 of the initially presented recommendations. CONCLUSION: The Delphi-consented recommendations for parents and adult children at the end of life provide the first guidance for hands-on dyadic psychosocial support measures for parent-adult child relationships, specifically. The next step could involve the structured implementation of the recommendations, accompanied by scientific research. This study was registered on October 27, 2017, with the German Clinical Trials Register (DRKS00013206).

'Mums are sacred, and mums don't die': A mixed-methods study of adult child-parent dyadic relationships at the end of life.

OBJECTIVES: The aim of the present study was to report the specific challenges pertaining to the experiences and needs of (1) terminally ill adult children and their parents and (2) terminally ill parents and their adult children, regarding their relationship and relationship roles. The study sought to identify similar and differing relationship patterns between the two dyadic types. DESIGN: This prospective observational study used an exploratory mixed-methods approach. PARTICIPANTS: Patients and caregivers were recruited (Feb. 2018 - Nov. 2019) via general and specialist palliative care providers in Germany. METHODS: The study combined semi-structured interviews with quantitative questionnaires covering socio-demographic details, attachment style and emotional intimacy. FINDINGS: A total of 65 patients and 42 family caregivers participated in the study. Interview data indicate that illness situation and dependencies were perceived in both dyads to represent a relationship role reversal contrary to the 'natural order'. With respect to dyad 1, adult children stressed their need for autonomy, whereas caregiving parents strived for greater intimacy in the relationship. Within dyad 2, terminally ill parents and adult children experienced a new relationship intensity. Questionnaire data showed that emotional intimacy was perceived by patients in both dyads and adult child caregivers as significantly higher in the current illness situation compared to the pre-illness situation. CONCLUSIONS: This was the first study to contribute to an understanding of the different needs of terminally ill adult children/parents and their parent/adult child caregivers, thus contributing to an understanding of the different needs of these parties, both within and between the dyadic forms. The results suggest that the dyads share similar themes, which should be integrated into general support interventions; however, some themes appear more relevant for one dyad, only. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: For both dyads, we recommend psychological counseling to support open communication and understanding between parties.

Analysing the administration of an intermediate level of outpatient palliative care in Germany and developing recommendations for improvement (Polite): A study protocol for a mixed-methods study.

BACKGROUND: To date, there has been no systematic research on the intermediate level service (level 2) in outpatient palliative care that was introduced in Germany in 2017. Accordingly, the Polite research project aims at: (1) investigating the current state of level 2 palliative care and (2) developing recommendations for its optimisation. METHODS: The multi-perspective, observational study will follow a mixed-methods approach across two study phases. In phase 1a, quantitative routinely collected data from a statutory general local health insurance provider will be used to identify patients who received level 2 or other outpatient palliative care in the years 2017-2019. In phase 1b, a questionnaire will be sent to all registered general practitioners (GPs) in Lower Saxony to collect information on the number and characteristics of physicians offering level 2 palliative care. In phase 1c, a quantitative, standardised online questionnaire for teams providing specialised outpatient palliative care will be administered to assess the interfaces of level 2 palliative care. In phase 2a, the results from phases 1a-c will be discussed in an expert workshop with the aim of developing ideas to adapt and optimise level 2 outpatient palliative care. Finally, in phase 2b, the empirically derived recommendations from phases 1 and 2a will be agreed upon via a multi-round Delphi survey involving experts with sufficient influence to promote the project results and recommendations nationally. DISCUSSION: The results of the project will facilitate the optimisation of outpatient palliative care, as well as its administration, nationwide. TRIAL REGISTRATION: The study was registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00024785); date of registration: 06th May 2021) and is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.

[Implications for health services research in GP practices using the example of an intervention study on palliative care]. / Implikationen für Versorgungsforschung in Hausarztpraxen am Beispiel einer Interventionsstudie zur Palliativversorgung.

INTRODUCTION: So far there has been little evidence of the extent to which project steps can affect the timing and successful implementation of research projects in general practitioner (GP) practices. Using the example of an intervention study on palliative care, the aim of this article is to report a) how the overall course of the project turned out compared to the original planning, and b) what recommendations can be derived to promote efficient implementation of intervention studies in GP practices. METHODS: In two workshops each, GP practice teams selected specific measures to improve their palliative care and tested them during a four-month implementation phase. In order to track the progress of the project, the times at which the practice teams reported their participation in the study, the individual project steps and the contacts were documented and descriptively analysed using Microsoft Excel. RESULTS: Due to a high willingness of practice teams to participate in the intervention study, recruitment was completed on time. The overall duration of the project was extended due to an increased workload for the preparation of an unexpectedly high number of selected measures to improve palliative care. DISCUSSION: Conducting intervention studies in GP practices is promising if practice teams take an active and co-determining role during the entire research process. Research projects can best be implemented if they involve minimal time commitment for the practice teams, and if continuous personal support from the study team is ensured. CONCLUSION: When planning future intervention studies with a high participatory share of GP practice teams, it is advisable to take into account potential additional work for the preparation and further development of intervention measures.