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BACKGROUND: Chronic, non-malignant diseases (CNMD) like chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF) and dementia in advanced stages are very burdensome for patients. Timely palliative care with strong collaboration between general practitioners (GPs) and specialist palliative home care (SPHC) teams can reduce symptom burden, hospitalization rates, hospitalization costs and overall healthcare costs. The KOPAL-study on strengthening interprofessional collaboration for patients with palliative care needs tested the effect of an intervention comprising of a SPHC nurse assessment and an interprofessional case conference. This qualitative evaluative study explores patients', proxies' and their associates' motivation to participate in the KOPAL-study and views on the (benefits of the) intervention. METHODS: We interviewed 13 male and 10 female patients as well as 14 proxies of patients with dementia and six associates of study participants using a semi-structured interview guide. All interviews were digitally recorded, transcribed verbatim and analysed with deductive-inductive qualitative content analysis. RESULTS: Motivation for participation was driven by curiosity, the aim to please the GP or to support research, respectively to help other patients. Few interviewees pointed out to have expected positive effects for themselves. The nurse visit was evaluated very positively. Positive changes concerning health care or quality of life were reported sparsely. Most study participants did not prepare for the SPHC nurse assessment. They had no expectations concerning potential benefits of such an assessment, the interdisciplinary case conference and an early integration of palliative care. The majority of interviewees reported that they did not talk about the nurse visit and the interprofessional case conference with their GPs. CONCLUSION: Our results lead to the conclusion that SPHC nurses can serve as an advocate for the patient and thereby support the patients' autonomy. GPs should actively discuss the results of the interdisciplinary case conference with patients and collaboratively decide on further actions. Patient participation in the interdisciplinary case conference could be another way to increase the effects of the intervention by empowering patients to not just passively receive the intervention. TRIAL REGISTRATION: DRKS00017795 German Clinical Trials Register, 17Nov2021, version 05.

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OBJECTIVE: The Progressive Supranuclear Palsy quality of life scale (PSP-QoL) has been shown to be a useful tool for capturing health-related quality of life of patients in "everyday life" and in progressive supranuclear palsy (PSP) research. However, at 45 items in length, the questionnaire can take a long time, exhausting PSP patients, in particular if cognitive impaired, which can have a negative impact on the assessment. The aim of this study was to establish a condensed version of the PSP-QoL for research and routine clinical care. METHODS: In this retrospective study, data originating from a German cohort of PSP patients was analyzed. Data from 245 PSP patients were included in this study. The short PSP-QoL questionnaire was created using a two-factor solution and item-total and inter-item correlations for mental and physical aspects of daily living of the PSP-QoL followed by confirmatory factor analysis. RESULTS: The final scale included 12 items representing mental (five items) and physical symptoms (seven items). The specified two-factor model displayed an excellent fit in the confirmatory factor analysis. The short Progressive Supranuclear Palsy Quality of Life scale (PSP-ShoQoL) correlated moderately with the PSP Rating Scale (r [243] = 0.514, P < 0.001) and Geriatric depression scale (r [231] = 0.548, P < 0.001). Sensitivity to change confirmed a significant decrease in QoL after 12 months. DISCUSSION: In this study, we created a 12-item PSP-ShoQoL designed to "facilitate" daily clinical work that correlated strongly with the PSP-QoL and was sensitive to change. © 2024 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.

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OBJECTIVE: Chronic non-malignant diseases (CNMDs) are under-represented in specialist palliative home care (SPHC). The timely integration of SPHC for patients suffering from these diseases can reduce hospitalisation and alleviate symptom burdens. An intervention of an SPHC nurse-patient consultation followed by an interprofessional telephone case conference with the general practitioner (GP) was tested in the KOPAL trial ('Concept for strengthening interprofessional collaboration for patients with palliative care needs'). As part of the trial, the aim of this study was to gain in-depth insights into SPHC physicians' perspective on care with and without the KOPAL intervention for patients with congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD) and dementia (D). DESIGN: Qualitative evaluation of the KOPAL intervention from the perspective of SPHC physicians as part of the KOPAL trial. Thematic-focused narrative interviews analysed with grounded theory. SETTING: We conducted the KOPAL study and its qualitative evaluation in Lower Saxony and the greater Hamburg area, Germany. PARTICIPANTS: 11 physicians from 14 SPHC teams who participated in the trial were interviewed. RESULTS: A grounded theory of the necessity of collaboration between GPs and SPHC teams for patients with CHF, COPD and dementia was developed. From the perspective of SPHC physicians, patients with CNMD are generally difficult to manage in GP care. The timing of SPHC initiation is patient-specific, underscoring the need for collaboration between SPHC physicians and GPs. However, the primary mandate for healthcare should remain with GPs. SPHC physicians actively seek collaboration with GPs (eg, through the KOPAL intervention), viewing themselves as advisors for GPs and aspiring to collaborate as equal partners. CONCLUSION: Effective communication and the negotiation of future interprofessional collaboration are essential for SPHC teams. TRIAL REGISTRATION NUMBER: DRKS00017795.

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INTRODUCTION: Guidelines are important tools for supporting quality management in the care of patients with cancer. However, in clinical practice barriers exist to their implementation. Consequently, Quincie aims at: (1) gaining a comprehensive picture of the implementation of quality indicators from the national guideline on palliative care for patients with incurable cancer in palliative care units and (2) describing the factors that facilitate and hinder their implementation to develop recommendations. METHODS AND ANALYSIS: The Quincie study follows a mixed-methods approach across two study phases. In phase 1, routinely collected data of 845 patients with incurable cancer from eight palliative care units in the commuting area of the Comprehensive Cancer Centre Lower Saxony will be analysed, regarding the implementation of 10 quality indicators from the national guideline on palliative care. Structural characteristics of the palliative care units will also be collected. In phase 2, recommendations for the practical implementation of the quality indicators, focusing on the achievement of the quality objectives identified in phase 1, will be developed in an implementation workshop. These recommendations will be subsequently agreed on via a Delphi survey. ETHICS AND DISSEMINATION: Ethical approval has been given by the ethics committee of the Hannover Medical School (first vote, No. 10567_BO_K_2022) and other relevant institutions. The results will provide urgently needed insights on the implementation of the national guideline on palliative care in clinical care and on the factors that facilitate and hinder this implementation. The results are expected to promote better care for patients with incurable cancer. The results will be directly reported to the participating palliative care units and will be published in relevant peer-reviewed journals. They will also be presented at national conferences. TRIAL REGISTRATION NUMBER: German Clinical Trials Register (DRKS00029965).

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The "Trauer Netzwerk Niedersachsen" ("Bereavement Network Lower Saxony" (BNLS)) aims at supporting families after the loss of a child or teenager due to various causes. This study aims to describe the experiences of bereaved family members with the BNLS counsellors. 12 semi-structured interviews were conducted with parents who had received or were currently receiving BNLS counselling. The interviews revealed the vital role counselling played aiding individuals cope with their grief. Participants valued the bereavement support, which was often lacking in their personal support networks. Counselling assisted parents in returning to daily life and caring for loved ones. Discussing "death" and "dying" helped participants find peace with their loss. Our findings suggest that bereavement counselling should be considered an essential component of healthcare for family members dealing with the loss of a child. Additionally, there is need for awareness and publicity for both the BNLS and its bereavement counselling services.

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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).

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

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In the German context, research is lacking on the support experiences and unmet needs of informal caregivers in end-of-life situations who are geographically distanced from their ill relatives. The current study aimed at deepening our understanding of the specific end-of-life support experiences and needs of informal long-distance caregivers. The study employed an explorative design, applying qualitative interviews. Thirty-three long-distance family caregivers participated in the study (December 2021-October 2022). The results showed that long-distance caregivers relied on close exchange and cooperation with local family and non-kin caregivers. They also expressed the wish to be considered more proactively by professional caregivers, with respect to their specific geographic situations. They further recommended that local care networks be built to support patients. Hypotheses were deduced from long-distance caregivers' recommendations for support interventions. The results may be useful for the development of an online information resource for long-distance caregivers in end-of-life situations.

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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.

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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.

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Background: The "Bereavement Network Lower Saxony" (BNLS) provides professional bereavement support to families grieving for a child. The present study aimed at exploring the experiences of BNLS bereavement counsellors in providing bereavement support to affected families. Methods: 12 semi-structured qualitative interviews were conducted with bereavement counsellors of the BNLS between June and August 2022. Interviews were recorded, transcribed and analysed using qualitative content analysis, according to Mayring (2010). Results: Bereavement counsellors perceived that grief could be experienced very differently, and thus bereavement support must always be based on the individual needs and resources of bereaved family members. Bereavement counsellors appreciated exchange within the network and supervision to cope with emotional load that arises from compassion for those affected. Conclusions: Bereavement support within a network structure may improve the accessibility of individual support and enable exchange between counsellors, thus ensuring better bereavement support. Public outreach and strategic partnerships with clinics may amplify the positive impact of this support service.

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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.

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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.

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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.

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OBJECTIVES: There is a lack of research on the specific experiences and needs of geographically distant kin caregivers in end-of-life situations. Clinicians and researchers would benefit from a systematic overview. The scoping review aimed at examining the international literature on the experiences and needs of informal long-distance (LD) caregivers at the end of life, to address gaps in the evidence base, and to make recommendations for further research. DESIGN: The scoping review was conducted according to the methodological framework of Arksey and O'Malley. Studies of various designs involving kin caregivers were analysed narratively. DATA SOURCES: A highly sensitive strategy was used to search CINAHL, Google Scholar, PsycInfo, PubMed and Web of Science Core Collection, from inception to 8 November 2021, with searches rerun in CINAHL, PsycInfo and PubMed on 31 January 2023. An additional hand search of the reference lists of the identified articles was performed. RESULTS: Two authors independently assessed the titles and abstracts of 3827 scientific papers. As a result, 89 full texts were reviewed and 20 articles plus one review were included in the review. Five major themes were identified: (1) LD as a barrier to caregiving, (2) communication difficulties and the role of video and telephone calls, (3) the burdens and benefits of LD caregiving, (4) interaction and conflict with local caregivers and (5) LD caregivers' wishes and needs for support. CONCLUSIONS: Further quantitative and mixed-methods studies should be undertaken to improve our understanding of LD caregiving for relatives at the end of life. Studies to explore the feasibility and implementation of communication technologies in end-of-life LD caregiving are also needed.

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BACKGROUND: Nursing home entry often marks the transition into the end-of-life. In 2018, Germany legally introduced reimbursement for advance care planning (ACP according to § 132 g SGB V) in nursing homes that applied for ACP approval to improve end-of-life care. The Gut-Leben project aims to evaluate the implementation and barriers of ACP in nursing homes in Germany, with a special focus on the federal state of Lower Saxony, and provide practical recommendations for further development of end-of-life care. METHODS: This mixed-methods study spreads across five work packages (WP) over a three-year period. WP 1 will explore the approval process, implementation, and barriers to ACP in nursing homes. Data will be collected through a national postal survey in a random sample of n = 600. WP 2 will explore whether documented ACP reports are applicable as a data source for research (expecting up to 500 available ACP reports). In WP 3a and 3b, data on the ACP process will be collected in n = 15 approved nursing homes in Lower Saxony over a 12-months period. For WP 3a and WP 3b, data on ACP conversations (n = 600) and on end-of-life care paths (n = 300) will be collected by facilitators and nurses of the respective nursing homes. In WP 4, residents' characteristics upon entry and changes in these characteristics over the length of stay are analyzed, utilizing claims data from the AOK Lower Saxony (expected sample of about 100,000 people entering nursing homes over a 10-years period). WP 5 connects, interprets, and reflects on the findings from WP 1-4 through focus groups and individual interviews with facilitators, nursing staff, residents, relatives, and care providers. Within a participatory approach, a practice advisory board will be set up existing of personal of nursing homes and will be closely involved in the whole research process. DISCUSSION: In summary, the Gut-Leben project provides insight into the implementation and barriers of ACP in nursing homes according to German legislation for the first time, including practitioners' and residents' perspectives. Insights will help the further development of ACP in Germany through practical recommendations based on quantitative and qualitative data.

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Climate change is inseparably linked to human health. Although there is growing awareness of the threats to human health caused by climate change, it remains unclear how the German population perceives the relevance of climate change and its health consequences. Between May and September 2022, German residents were invited to participate in a cross-sectional online survey that explored three content areas: (1) the relevance of climate change, (2) health risks in connection with climate change and (3) collective and individual options for action against climate change. A total of 697 full data sets were collected for analysis (72% female, 51% ≥55 years old). The majority of participants agreed that human-induced climate change exists (85%), and that it has an impact on human health (83%). They also perceived the global population to be more strongly impacted by climate change than themselves (89% versus 68%). Most participants (76%) claimed to personally contribute to climate protection and 23% felt that their city or council contributed to climate protection. Although the majority of participants saw climate change as a threat to human health, they perceived other population groups to be most strongly affected. Cognitive dissonance might explain this lack of individual concern and one approach to addressing such distorted perceptions might be the dissemination of appropriate risk communication with health professionals involved in the communication.

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Little is known about support experiences and needs in the dyads of (1) terminally ill adult children and their parent caregivers and (2) terminally ill parents and their adult child caregivers. The current study aimed at investigating the experiences and needs of adult children and parents in end of life situations regarding their provision and receipt of support. The study employed a convergent parallel mixed-methods design, combining explorative qualitative interviews with the quantitative self-report Berlin Social Support Scales. Sixty-five patients (dyad 1: 19; dyad 2: 46) and 42 family caregivers (dyad 1: 13; dyad 2: 29) participated in the study (02/2018-11/2019). Results show that ill adult children felt less (well) supported than ill parents. Parent caregivers were often limited in the support they could provide, due to their age and health conditions. Hypotheses were deduced from patients' and family caregivers' notions to inform dyad-specific recommendations for support interventions.

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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).

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