Using normalization process theory to evaluate the use of patient-centred outcome measures in specialist palliative home care-a qualitative interview study.

BACKGROUND: Standardised use of patient-centred outcome measures (PCOMs) improves aspects of quality of care. Normalization Process Theory (NPT) considers the social (inter-)actions of implementation processes operationalised through four constructs: coherence-building, cognitive participation, collective action and reflexive monitoring. The aim of the study was to identify barriers and enablers for the successful use of PCOMs in specialist palliative home care (SPHC) using NPT, to collect clinically meaningful and reliable data to improve patient outcomes. METHODS: Qualitative study using semi-structured interviews with palliative care professionals from German SPHC teams who participated in a study using PCOMs. Data were analysed using Framework analysis, and contextualised within NPT. RESULTS: Seventeen interviews across five teams were conducted. Some teams already had an understanding of what PCOMs are and how to use them, based on previous experience. In other teams, this understanding developed through the perception of the benefits (coherence). Participation and engagement depended on individuals and was decisive for coherence-building. The attitude of the management level also played a major role (cognitive participation). Integration of PCOMs into everyday clinical practice varied and depended on the manifestation of the first two constructs and other already established routines (collective action). In the context of appraisal, both positive (e.g. focus on patient) and negative aspects (e.g. additional work) of using PCOMs were mentioned (reflexive monitoring). CONCLUSIONS: Although benefits of using PCOMs were partly recognised, not all teams continued standardised use. Here, not only the social (inter-)actions, but also the influence of the context (working environment) were decisive. Future implementation strategies should consider integrating PCOMs in existing electronic patient records, education sessions supporting coherence-building, internal facilitators/local champions, and ensuring frequent data analyses as it is beneficial and increases the readiness of using PCOMs.

Symptom and problem clusters in German specialist palliative home care - a factor analysis of non-oncological and oncological patients' symptom burden.

BACKGROUND: Specialist palliative home care (SPHC) aims to maintain and improve patients' quality of life in the community setting. Symptom burden may differ between oncological and non-oncological patients. However, little is known about diagnosis-related differences of SPHC patients. This study aims to describe the prevalence of physical symptom burden and psychosocial problems of adult patients in SPHC, and to evaluate diagnosis-related symptom clusters. METHODS: Secondary analysis of data from a prospective, cross-sectional, multi-centre study on complexity of patients, registered at the German Register for Clinical Studies (DRKS trial registration number: DRKS00020517, 12/10/2020). Descriptive statistics on physical symptom burden and psychosocial problems at the beginning of care episodes. Exploratory and confirmatory factor analyses to identify symptom and problem clusters. RESULTS: Seven hundred seventy-eight episodes from nine SPHC teams were included, average age was 75 years, mean duration of episode 18.6 days (SD 19.4). 212/778 (27.2%) had a non-oncological diagnosis. Main burden in non-oncological episodes was due to poor mobility (194/211; 91.9%) with significant diagnosis-related differences (χ² = 8.145, df = 1, p = .004; oncological: 472/562; 84.0%), and due to weakness (522/565; 92.4%) in oncological episodes. Two symptom clusters (psychosocial and physical) for non-oncological and three clusters (psychosocial, physical and communicational/practical) for oncological groups were identified. More patients in the non-oncological group compared to the oncological group showed at least one symptom cluster (83/212; 39.2% vs. 172/566; 30.4%). CONCLUSION: Patients with non-oncological diseases had shorter episode durations and were more affected by symptom clusters, whereas patients with oncological diseases showed an additional communicational/practical cluster. Our findings indicate the high relevance of care planning as an important part of SPHC to facilitate anticipatory symptom control in both groups.

Structural characteristics and contractual terms of specialist palliative homecare in Germany.

BACKGROUND: Multi-professional specialist palliative homecare (SPHC) teams care for palliative patients with complex symptoms. In Germany, the SPHC directive regulates care provision, but model contracts for each federal state are heterogeneous regarding staff requirements, cooperation with other healthcare providers, and financial reimbursement. The structural characteristics of SPHC teams also vary. AIM: We provide a structured overview of the existing model contracts, as well as a nationwide assessment of SPHC teams and their structural characteristics. Furthermore, we explore whether these characteristics serve to find specifc patterns of SPHC team models, based on empirical data. METHODS: This study is part of the multi-methods research project "SAVOIR", funded by the German Innovations Fund. Most model contracts are publicly available. Structural characteristics (e.g. number, professions, and affiliations of team members, and external cooperation) were assessed via an online database ("Wegweiser Hospiz- und Palliativversorgung") based on voluntary information obtained from SPHC teams. All the data were updated by phone during the assessment process. Data were descriptively analysed regarding staff, cooperation requirements, and reimbursement schemes, while latent class analysis (LCA) was used to identify structural team models. RESULTS: Model contracts have heterogeneous contract partners and terms related to staff requirements (number and qualifications) and cooperation with other services. Fourteen reimbursement schemes were available, all combining different payment models. Of the 283 SPHC teams, 196 provided structural characteristics. Teams reported between one and 298 members (mean: 30.3, median: 18), mainly nurses and physicians, while 37.8% had a psychosocial professional as a team member. Most teams were composed of nurses and physicians employed in different settings; for example, staff was employed by the team, in private practices/nursing services, or in hospitals. Latent class analysis identified four structural team models, based on the team size, team members' affiliation, and care organisation. CONCLUSION: Both the contractual terms and teams' structural characteristics vary substantially, and this must be considered when analysing patient data from SPHC. The identified patterns of team models can form a starting point from which to analyse different forms of care provision and their impact on care quality.

[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.

COMPANION: development of a patient-centred complexity and casemix classification for adult palliative care patients based on needs and resource use - a protocol for a cross-sectional multi-centre study.

BACKGROUND: A casemix classification based on patients' needs can serve to better describe the patient group in palliative care and thus help to develop adequate future care structures and enable national benchmarking and quality control. However, in Germany, there is no such an evidence-based system to differentiate the complexity of patients' needs in palliative care. Therefore, the study aims to develop a patient-oriented, nationally applicable complexity and casemix classification for adult palliative care patients in Germany. METHODS: COMPANION is a mixed-methods study with data derived from three subprojects. Subproject 1: Prospective, cross-sectional multi-centre study collecting data on patients' needs which reflect the complexity of the respective patient situation, as well as data on resources that are required to meet these needs in specialist palliative care units, palliative care advisory teams, and specialist palliative home care. Subproject 2: Qualitative study including the development of a literature-based preliminary list of characteristics, expert interviews, and a focus group to develop a taxonomy for specialist palliative care models. Subproject 3: Multi-centre costing study based on resource data from subproject 1 and data of study centres. Data and results from the three subprojects will inform each other and form the basis for the development of the casemix classification. Ultimately, the casemix classification will be developed by applying Classification and Regression Tree (CART) analyses using patient and complexity data from subproject 1 and patient-related cost data from subproject 3. DISCUSSION: This is the first multi-centre costing study that integrates the structure and process characteristics of different palliative care settings in Germany with individual patient care. The mixed methods design and variety of included data allow for the development of a casemix classification that reflect on the complexity of the research subject. The consecutive inclusion of all patients cared for in participating study centres within the time of data collection allows for a comprehensive description of palliative care patients and their needs. A limiting factor is that data will be collected at least partly during the COVID-19 pandemic and potential impact of the pandemic on health care and the research topic cannot be excluded. TRIAL REGISTRATION: German Register for Clinical Studies trial registration number: DRKS00020517 .

["Creativity and a Mindset Shift were Essential." Impact of the COVID-19 Pandemic on Specialized Palliative Home: A Nationwide Online Survey]. / "Es waren Kreativität und Umdenken erforderlich." Auswirkungen der COVID-19 Pandemie auf die spezialisierte ambulante Palliativversorgung (SAPV). Eine bundesweite Onlinebefragung.

Objectives The aim of this study was to explore the impact of the COVID-19 pandemic and the efforts taken to contain it on specialized palliative homecare (SPHC) practice from the perspective of SPHC team leaders.Methods In this cross-sectional study, an online questionnaire with quantitative and qualitative questions was developed and used, focusing on the experience of SAPV in the first and second wave of the COVID-19 pandemic in Germany. In a structured recruitment process, all German SPHC teams (n=357) were invited to participate. Results From 10/10/2020 to 07/01/2021, 154 SPHC teams participated (response rate 43%). They described clear effects of the COVID-19 pandemic on their activities. Despite pandemic-related problems with staff availability (78.5%), patient care was ensured without major problems. The number of patients to be cared for remained stable for most teams, was increasing for some, and decreasing only for a few. A central factor was the switch from direct contact with patients and their relatives to telephone contact. Additional complicating factors were the general avoidance of contacts, compliance with hygiene regulations for necessary personal contacts, and pandemic-related uncertainties and fears, both among the team itself and among relatives and patients. The procurement of protective equipment was a challenge during the first wave. Problems in collaboration with network partners (e. g., nursing homes and volunteer hospice services) had decreased over the course of the pandemic, but were greater than before in all areas. Many measures to cope with the pandemic challenges were implemented, others were assessed as useful but not implemented, and others as not useful or feasible. Conclusions SPHC teams report that despite the need to adapt many processes to the pandemic situation, they have managed to maintain patient care, although under more difficult conditions.

Effectiveness of two types of palliative home care in cancer and non-cancer patients: A retrospective population-based study using claims data.

BACKGROUND: Comparative effectiveness of different types of palliative homecare is sparsely researched internationally-despite its potential to inform necessary decisions in palliative care infrastructure development. In Germany, specialized palliative homecare delivered by multi-professional teams has increased in recent years and factors beyond medical need seem to drive its involvement and affect the application of primary palliative care, delivered by general practitioners who are supported by nursing services. AIM: To compare effectiveness of primary palliative care and specialized palliative homecare in reducing potentially aggressive interventions at the end-of-life in cancer and non-cancer. DESIGN: Retrospective population-based study with claims data from 95,962 deceased adults in Germany in 2016 using multivariable regression analyses. SETTINGS/PARTICIPANTS: Patients having received primary palliative care or specialized palliative homecare (alone or in addition to primary palliative care), for at least 14 days before death, differentiating between cancer and non-cancer patients. RESULTS: Rates of potentially aggressive interventions in most indicators were higher in primary palliative care than in specialized palliative homecare (p < 0.01), in both cancer and non-cancer patients: death in hospital (odds ratio (OR) 4.541), hospital care (OR 2.720), intensive care treatment (OR 6.749), chemotherapy (OR 2.173), and application of a percutaneous endoscopic gastrostomy (OR 4.476), but not for parenteral nutrition (OR 0.477). CONCLUSION: Specialized palliative homecare is more strongly associated with reduction of potentially aggressive interventions than primary palliative care in the last days of life. Future research should identify elements of specialized palliative homecare applicable for more effective primary palliative care, too. German Clinical Trials Register (DRKS00014730).

[Palliative care at the end of life in Germany : Utilization and regional distribution]. / Palliativversorgung am Lebensende in Deutschland : Inanspruchnahme und regionale Verteilung.

BACKGROUND: Palliative care supply increased in Germany in recent years. But how many people use which forms of palliative care and how does this differ between regions? METHOD: Retrospective cohort study with claims data from insured persons who died in 2016: Based on services billed at least once in the last six months of life, we determined the use of primary palliative care (PPC), specialized palliative homecare (SPHC), as well as inpatient palliative and hospice care, using regional billing codes for PPC and SPHC services for the first time. RESULTS: Of the 95,962 deceased in the study population, 32.7% received palliative care nationwide, with variations from 26.4% in Bremen to 40.8% in Bavaria. PPC services were billed at 24.4% (16.9% in Brandenburg to 34.1% in Bavaria). SPHC services received 13.1% (6.3% in Rhineland-Palatinate to 18.9% in Brandenburg and 22.9% in Westphalia-Lippe with different SPHC practices). Inpatient palliative care was received by 8.1% (6.7% in Schleswig-Holstein/Hesse to 13.0% in Thuringia); 3.3% (1.6% in Bremen to 5.6% in Berlin) with hospice services. CONCLUSION: SPHC is used more frequently than previously reported, while PPC is declining. Utilization seems to be based less on objective needs than on region-specific framework conditions. Besides needs criteria, further development of palliative care should be oriented more towards outcomes and relevant framework conditions.

"An odyssey without receiving proper care" - experts' views on palliative care provision for patients with migration background in Germany.

BACKGROUND: Migrants seem to be underrepresented in palliative care in Germany. Access barriers and challenges in care remain unclear. We aimed to provide a comprehensive insight into palliative care for migrants, using expert interviews. METHODS: Interviews with experts on palliative and general health care for migrants were audiotaped and transcribed. Data analysis followed a qualitative content analysis method for expert interviews proposed by Meuser and Nagel. RESULTS: In total, 13 experts from various fields (palliative and hospice care, other care, research and training) were interviewed. Experts identified access barriers on the health care system and the patient level as well as the sociopolitical level. Services don't address migrants, who may use parallel structures. Patients may distrust the health care system, be oriented towards their home country and expect the family to care for them. In care, poor adaptation and inflexibility of health care services regarding needs of migrant patients because of scarce resources, patients' preferences which may contradict professionals' values, and communication both on the verbal and nonverbal level were identified as the main challenges. Conflicts between patients, families and professionals are at risk to be interpreted exclusively as cultural conflicts. Palliative care providers should use skilled interpreters instead of family interpreters or unskilled staff members, and focus on training cultural competence. Furthermore, intercultural teams could enhance palliative care provision for migrants. CONCLUSIONS: Though needs and wishes of migrant patients are often found to be similar to those of non-migrant patients, there are migration-specific aspects that can influence care provision at the end of life. Migration should be regarded as a biographical experience that has a severe and ongoing impact on the life of an individual and their family. Language barriers have to be considered, especially regarding patients' right to informed decision making. The reimbursement of interpreters in health care remains an open question.

Study protocol for a multi-methods study: SAVOIR - evaluation of specialized outpatient palliative care (SAPV) in Germany: outcomes, interactions, regional differences.

BACKGROUND: Since 2007, the German statutory health insurance covers Specialized Outpatient Palliative Care (SAPV). SAPV offers team-based home care for patients with advanced and progressive disease, complex symptoms and life expectancy limited to days, weeks or months. The introduction of SAPV is ruled by a directive (SAPV directive). Within this regulation, SAPV delivery models can and do differ regarding team structures, financing models, cooperation with other care professionals and processes of care. The research project SAVOIR is funded by G-BA's German Innovations Fund to evaluate the implementation of the SAPV directive. METHODS: The processes, content and quality of SAPV will be evaluated from the perspectives of patients, SAPV teams, general practitioners and other care givers and payers. The influence of different contracts, team and network structures and regional and geographic settings on processes and results including patient-reported outcomes will be analyzed in five subprojects: [1] structural characteristics of SAPV and their impact on patient care, [2] quality of care from the perspective of patients, [3] quality of care from the perspective of SAPV teams, hospices, ambulatory nursing services, nursing homes and other care givers, content and extent of care from [4] the perspective of General Practitioners and [5] from the perspective of payers. The evaluation will be based on different types of data: team and organizational structures, treatment data based on routine documentation with electronic medical record systems, prospective assessment of patient-reported outcomes in a sample of SAPV teams, qualitative interviews with other stakeholders like nursing and hospice services, a survey in general practitioners and a retrospective analysis of claims data of all SAPV patients, covered by the health insurance fund BARMER in 2016. DISCUSSION: Data analysis will allow identification of variables, associated with quality of SAPV. Based on these findings, the SAVOIR study group will develop recommendations for the Federal Joint Committee for a revision of the SAPV directive. TRIAL REGISTRATION: German Clinical Trials Register (DRKS): DRKS00013949 (retrospectively registered, 14.03.2018), DRKS00014726 (14.05.2018), DRKS00014730 (30.05.2018). Subproject 3 is an interview study with professional caregivers and therefore not registered in DRKS as a clinical study.

[Palliative care for patients with Turkish or Arabic migration background in Lower Saxony : A survey from palliative care professionals' perspective]. / Palliative Versorgung von Menschen mit türkischem oder arabischem Migrationshintergrund in Niedersachsen : Eine Befragung spezialisierter Palliativversorger.

BACKGROUND AND OBJECTIVES: People with a migration background (MB) are an important part of German society. If and how they use specialised palliative care (SPC) has not been studied. We aimed to assess the current SPC for patients with Turkish or Arabic MB (the largest group of immigrants in Germany with a shared ascribed culture) from the point of view of healthcare professionals (HCP) in Lower Saxony. METHOD: All HCPs in institutions providing SPC (n = 90) were invited to participate in an anonymous online survey which contained closed and open questions about care for this patient group, characteristics of the last patient with Turkish or Arabic MB they cared for, and resources and strategies to care for these patients. The survey was analysed using descriptive statistics and qualitative content analysis. RESULTS: Fifty-five HCPs in SPC participated, mostly nurses aged between 40 and 60 years. One fifth had not cared for a patient with Turkish or Arabic MB during the last 12 months. Given their local population, 84.6% estimated that they cared for a lower number of patients than would be representative. In care, problems with communication as well as difficulties to interact with and manage families, and in organising and planning care were most prevalent. Only 21% of participants had access to interpreters. DISCUSSION: Patients with Turkish or Arabic MB seem to be underrepresented in SPC. The high rate of communication problems highlights the necessity of reliable and accessible interpreter services. Most difficulties were of psychosocial nature, showing how important the holistic approach of SPC is in caring for terminally ill patients with Turkish or Arabic MB.

[Attitudes and experiences regarding physician assisted suicide : A survey among members of the German Association for Palliative Medicine]. / Einstellungen zu und Erfahrungen mit ärztlich assistiertem Suizid : Eine Umfrage unter Mitgliedern der Deutschen Gesellschaft für Palliativmedizin.

BACKGROUND: The need to regulate physician-assisted suicide (PAS) and organizations offering assisted suicide has been controversially debated in Germany. Before the German parliament voted on various drafts in November 2015, the German Association for Palliative Medicine surveyed its members on their attitudes and experiences regarding PAS. METHOD: Items for the survey were derived from the literature and consented in a focus group. LITERATURE SEARCH: 2005-2015 - PubMed: PAS [Title/Abstract] UND survey (all countries), grey literature. We invited 5152 members of the DGP to participate in the online/paper survey. Descriptive quantitative and content analytic qualitative analysis of data using SPSS and MaxQDA. RESULTS: We obtained 1811 valid data sets (response rate 36.9%). 33.7% of the participants were male, 43.6% were female, and 0.4% identifed as other. Physicians accounted for 48.5% of the respondents, 17.8% nurses, other professions 14.3%, and about 20% of the data was missing socio-demographic information. More than 90% agreed that "wishes for PAS may be ambivalent" and "are rather a wish to end an unbearable situation". Of the 833 participating physicians, 56% refused participating in PAS and 74.2% had been asked to perform PAS. PAS was actually performed by 3%. Of all participating members, 56% approved of a legal ban of organizations offering assisted suicide. More than 60% of all professions agreed that PAS is not a part of palliative care. CONCLUSION: The respondents show a broad spectrum of attitudes, only partly supporting statements of relevant bodies, such as DGP. Because many are confronted with the issue, PAS is relevant to professionals in palliative care.

Physicians' and nurses' expectations and objections toward a clinical ethics committee.

The study aimed to explore the subjective need of healthcare professionals for ethics consultation, their experience with ethical conflicts, and expectations and objections toward a Clinical Ethics Committee. Staff at a university hospital took part in a survey (January to June 2010) using a questionnaire with open and closed questions. Descriptive data for physicians and nurses (response rate = 13.5%, n = 101) are presented. Physicians and nurses reported similar high frequencies of ethical conflicts but rated the relevance of ethical issues differently. Nurses stated ethical issues as less important to physicians than to themselves. Ethical conflicts were mostly discussed with staff from one's own profession. Respondents predominantly expected the Clinical Ethics Committee to provide competent support. Mostly, nurses feared it might have no influence on clinical practice. Findings suggest that experiences of ethical conflicts might reflect interprofessional communication patterns. Expectations and objections against Clinical Ethics Committees were multifaceted, and should be overcome by providing sufficient information. The Clinical Ethics Committee needs to take different perspectives of professions into account.

Specialist palliative care classification: typology development.

OBJECTIVES: The heterogeneity of specialist palliative care services requires a classification to enable a clear description and comparison. In Germany, specialist palliative care is provided by palliative care units, palliative care advisory teams in hospitals and palliative home care teams. The differentiation between the three care settings can serve as a first level of classification. However, due to profound variations in regulatory structures and financing systems, services within each setting are heterogeneous and characteristics remain unclear, which impedes quality management. Further characteristics of specialist palliative care models need to be considered to allow for differentiation. Thus, services should be described on a polyhierarchical basis, such as a typology, representing relevant characteristics. We aimed at the development of a comprehensive classification to facilitate the description and differentiation of specialist palliative care models. METHODS: Qualitative study including the development of a literature based, preliminary list of structural and processual characteristics, expert interviews and focus groups. Eleven interviews from May to June 2020 and two focus groups, with seven and nine participants each, in January 2021. RESULTS: Several structure and process characteristics were identified as suitable features for the specification of specialist palliative care in Germany. A classification in form of a typology including relevant characteristics has been developed. CONCLUSIONS: The advanced typology refines the existing level of differentiation within specialist palliative care services in Germany and paves the way for an improved understanding of services. This deeper insight into structure and process characteristics of specialist palliative care is necessary internationally.

[Patient-reported outcomes and quality of care in specialized palliative home care: a nationwide, prospective longitudinal cohort trial]. / Symptomverlauf, Betreuungsqualität und Zufriedenheit mit der spezialisierten ambulanten Palliativversorgung (SAPV) aus Patient*innenperspektive: eine bundesweite prospektive Längsschnittstudie.

INTRODUCTION: Since 2007, patients receiving palliative care have been entitled to specialised outpatient palliative care (SAPV). Until now, the quality of care of the SAPV was only regionally focussed or in relation to individual SAPV teams. A nationwide analysis of outcome quality is still awaited. The organisation and design of structures and processes vary greatly from region to region, which complicates a comparative assessment of implementation. One way to measure the quality of the heterogeneous structures and processes is to collect patient-reported outcomes. Here, it is possible to use symptom burden, quality of care and patient satisfaction with SAPV care, since patients' quality of life is a central focus of SAPV care. This article is part of the research project SAVOIR, which is funded by the G-BA Innovation Fund. METHODS: For this prospective longitudinal survey of the outcome quality of SAPV, structured data were collected at two measurement points (t1 and t2 [4-10 days after t1]). A nationwide, representative sample of SAPV teams was targeted. These teams performed consecutive recruitment of patients included in SAPV. Two questionnaire instruments were used: the IPOS (Integrated Palliative Outcome Scale) at t1 and t2, and the QUAPS (quality control in specialized palliative home care) questionnaire at t2. Patient-reported outcomes measured improvement in symptom burden, patient satisfaction, and quality of care from the patient perspective. In addition, an exploratory stepwise regression analysis of factors associated with satisfaction was conducted. RESULTS: 42 SAPV teams agreed to participate in the study. They recruited a total of 964 patients at measurement time t1 (t2: 690 patients). The analyses show that the number and intensity of symptoms from the patient perspective decreased significantly during the course of SAPV treatment, especially pain, gastrointestinal symptoms, but also psychological complaints. 74.7 % of the patients reported a high level of satisfaction with SAPV. Also, the quality of care was considered to be high by the patients. Exploratively, five factors were extracted that explain 55 % of the satisfaction with SAPV: respect for the patient's decision, quality of communication, support with practical problems, and referral to care measures as well as symptom relief between the two measurement points. CONCLUSIONS: The SAPV patients recruited from a total of nine KV regions reported a reduced symptom burden and a high level of satisfaction with SAPV and rated the quality of care provided by SAPV as high.

[Quality of care in specialized palliative homecare from the provider perspective: A qualitative study]. / Versorgungsqualität in der spezialisierten ambulanten Palliativversorgung aus Sicht der Leistungserbringer: eine qualitative Studie.

BACKGROUND: Since its introduction in 2007, the quality of care in specialized palliative home care (SAPV) is being measured using the patients' perspective. The perception of beneficial or inhibiting factors on the quality of care from the perspective of care providers received only little attention. OBJECTIVE: To investigate the factors that promote or impede the quality of care in SAPV from the care providers' perspective. METHODS: Within the framework of a transregional qualitative study, 113 problem-centered interviews were conducted on-site at 10 SAPV providers with their staff as well as their network partners. Grounded theory methodology was used for data curation and analysis. RESULTS: The factors that are perceived as either enhancing or inhibiting the quality of care largely depends on the culture of care of the individual SAPV provider. For participating doctors, nurses and psychosocial professionals, successful performance is associated with good symptom control, participation of relatives and the achievement of certainty of action and of interpretation by means of 'good' decision-making procedures. Problematic performances are linked to a lack of time resulting in restlessness and especially in disagreement between the parties involved in the provision of care as well as to the denial of death. CONCLUSIONS: The results of the study show that the perceived strategies, interpretations and evaluation categories, which are associated with good quality of care, are very heterogenous. On the basis of qualitative data, they do, however, follow three typical patterns in terms of cultures of care: proceduralism, holism and dualism.

[Can migration background be a boundary in palliative care at the end of life?] / Der Migrationshintergrund als Grenze der Palliativversorgung am Lebensende?

BACKGROUND: According to current research data, individuals with migration background rarely utilize palliative care services. The potential reasons remain largely unclear, with cultural differences being suggested most frequently. A study focusing on the needs of cancer patients with migration background in Germany provides an overview of the care problems encountered. METHOD: The qualitative study design focuses on biographic narratives by patients, their relatives and medical care providers (n = 57). Data were analyzed with "grounded theory" which disclosed various categories and coping strategies in dealing with both the disease and the care provided. RESULT: Arriving in palliative care, severely ill patients with migration background experience social exclusion. These migration-specific effects have a negative impact on coping with the disease and on palliative treatment and end-of-life care. Relatives and medical care providers face a challenge when they fail to meet the patients' expectations. Many problems are attributed to cultural differences although patients nearing the end of their lifes tend to articulate rather generic needs. CONCLUSION: Individuals with migration background frequently receive palliative care without their care givers having any specific knowledge of their migration biography. In order to do justice to societal effects, the support given must go beyond the mere medical expertise.

'It felt like a black hole, great uncertainty, but we have to take care for our patients'-Qualitative findings on the effects of the COVID-19 pandemic on specialist palliative home care.

BACKGROUND: The COVID-19 pandemic has affected health care systems worldwide. Multidisciplinary teams provide specialist palliative home care (SPHC) for patients with incurable, severe, progressive diseases. These patients are at the same time at high risk, if infected, highly constricted by containment measures, and dependent on support. AIM: To explore i) how German SPHC teams were affected by the pandemic during the first wave, ii) which challenges they faced, and iii) which strategies helped to handle the consequences of the COVID-19 pandemic for providing good SPHC. METHOD: Four focus groups (with representatives of 18 SPHC teams) and five guided interviews with stakeholders were conducted and analysed using qualitative content analysis. RESULTS: Seven key categories emerged from the data. A category in the background describes dependence on organizational characteristics (e.g. sponsorship), which varied by regional factors. Information management was a challenge to SPHC teams, as they had to collect, interpret and adapt, and disseminate information. They reported a shift in patient care because of the COVID-19 pandemic, due to restricted home visits, visitation ban in nursing homes, and difficulties for hospital, hospice and nursing home admissions. Measures to reduce risk of infection impeded teamwork. Teams relied upon their local networks in crisis management, but felt often overlooked by local health authorities. Their respective SPHC state associations supported them in information management and exchange. DISCUSSION: The pandemic has severely impacted home care for especially vulnerable seriously ill and dying people. A good network with local health providers and authorities could help to harmonize local regulations and ensure quality care for all patient groups. SPHC teams could play an important role in caring for palliative patients with COVID-19 who are not admitted to a hospital due to preferences or resources.

[Palliative Home Care Teams in Germany]. / Spezialisierte Ambulante Palliativ-Versorgung.

Since 2007, patients with severe advanced life-limiting illnesses and high, complex symptom burdens have a right to receive specialized outpatient palliative care (SAPV). Multi-professional teams with heterogeneous organizational structures provide care in cooperation with primary care givers, not limited to cancer patients. The aim of SAPV is to foster patient's autonomy and quality of life. SAPV can be provided as counseling of patient and care givers, coordination of care, additional supportive and full care provision. While the basis of SAPV provision is regulated by a SAPV directive, different contracts between care providers and health care insurances regulate organization, cooperation, definition of care levels, service provision and compensation. Some regions have model contracts that are binding for all SAPV teams in the area; in other regions teams negotiate e. g. compensation, individually with insurances. The article gives an overview of the regulations regarding SAPV.