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.

Accessibility to specialist palliative care services in Germany: a geographical network analysis.

BACKGROUND: The need for palliative care will increase over the next years because of the rise in deaths from chronic illness and demographic changes. The provision of specialist palliative care (SPC) in Germany (palliative care units (PCU), specialist palliative home care (SPHC) teams and palliative care advisory (PCA) teams) has been expanded in recent years. Despite the increasing availability, there is still insufficient coverage with long travel times. The aim was to describe the spatial distribution of SPC services in Germany, to calculate the potential accessibility of facilities and to assess potential spatial under-provision. METHODS: Retrospective cross-sectional study with regional analysis of SPC services in Germany. Addresses of SPC services registered online were geocoded, accessibility and network analyses were conducted, and proportion of the population living up to 60 minutes driving time were calculated. RESULTS: A total of 673 facilities were included. Their distribution is heterogeneous with every fourth of the 401 districts (110/401; 27.4%) lacking a SPC service. In half of the area of Germany the existing PCU and SPHC teams are within reach of 30 minutes, with nearly 90% of the population living there. Hospitals providing PCA teams can be reached within 30 minutes in 17% of the total area with provision for 43% of the population. CONCLUSIONS: A high coverage of SPHC teams and PCU indicates a good spatial distribution in Germany but no complete adequate provision of SPC services, especially for PCA teams. There is a persistent need for further implementation of hospital PCA teams.

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.

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 .

National and international non-therapeutic recommendations for adult palliative and end-of-life care in times of pandemics: A scoping review.

OBJECTIVE: The care of seriously ill and dying people is an important task, especially in times of pandemics and regardless of the patients' infection status. Before the SARS-CoV-2 pandemic, healthcare systems were not sufficiently prepared for the challenges of palliative and end-of-life care during a pandemic. The aim was to identify and synthesize relevant aspects and non-therapeutic recommendations of palliative and end-of-life care of seriously ill and dying people, infected and uninfected, and their relatives after one year into the pandemic to outline what actions, practices, and procedures were taken to deal with the pandemic and its consequences. METHOD: A scoping literature review following the methods of the PRISMA-ScR. The electronic literature search was conducted in 09/2020 and updated in 02/2021 using MEDLINE (Pubmed), with no restriction of publication date and eligibility criteria. In addition, a manual search was carried out. RESULTS: A total of 280 studies met the inclusion criteria and three main aspects have emerged. The reduction of physical contact due to the risk of infection severely limited the work of palliative care professionals and solutions had to be found to maintain palliative and end-of-life care structures. This has been accompanied by strict visitor restrictions and the need to support patients, relatives, and enable contact. The third relevant aspect is the integration of specialist palliative care expertise into other clinical settings. SIGNIFICANCE OF RESULTS: This scoping review demonstrates the need for basic palliative care training for every healthcare professional. It supports the importance of developing a national strategy for palliative care in pandemic times in every country, including the digitalization of the healthcare sector to offer telecommunication/telemedicine.