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Background: The COVID pandemic is an example of a crisis challenging healthcare systems worldwide. The impact of the pandemic on providing high-quality palliative care calls for a deeper understanding of specialist services during crises. This is essential in preparation for further crises., Aim: To develop a conceptual understanding of the impact of the pandemic on specialist palliative care as an example for arising future crises., Design: Qualitative interview study across Germany, following a constructivist grounded theory methodology., Setting/participants: Eleven semi-structured interviews with experts with overarching knowledge of structures and processes in specialist palliative care between 05-07/2020 and between 02-06/2021, 23 semi-structured interviews with healthcare professionals working in a specialist palliative care setting., Results: The complex system of palliative care provision during crises has properties that cannot be understood as separated parts of the care process. The pandemic led to unique structural and processual challenges characterized by interconnectedness, uncertainty, dynamic, underlying dilemmas, and unclear long-term goal. In response to the pandemic, teams experienced different phases, which enhanced adaption, innovation, and progress within complex care situations. Creative strategy approaches and dynamic responsiveness facilitated innovative development and could lead to long-lasting improvement within services. Availability of information, transparent communication, comprehensible instructions, participation in decision-making, and search for solutions contributed to teams' proactive development throughout the pandemic., Conclusion: Addressing the complex problems in specialist palliative care caused by crises requires system thinking and a learning mindset. This can facilitate teams to overcome the crisis and move forward rather than bounce back to normal., Competing Interests: Declaration of conflicting interestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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., (© 2023. The Author(s).)

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., (© 2023. The Author(s).)

Background: Over the last decades, patient-reported outcome measures (PROM) have been developed for a better understanding of patient needs. The Integrated Palliative Care Outcome Scale (IPOS) is an internationally recommended PROM in palliative care. The validated electronic version of IPOS (eIPOS) was implemented in four German specialist palliative home care (SPHC) teams for use in everyday clinical practice. Patients reported symptoms and concerns via eIPOS, which were transmitted directly to the electronic patient record of the respective SPHC team., Objectives: The aim of the study was to describe and explore the health care professionals' (HCPs') experiences regarding acceptance and use of eIPOS in clinical practice in SPHC., Design: The mixed-methods sequential explanatory design comprised an anonymized quantitative online survey followed by qualitative focus groups., Methods: The online survey asked in both closed and open questions for HCP's experience with eIPOS. Ambiguous results from the survey were discussed in two focus groups. Survey data were analysed with descriptive and univariable statistics, and the framework approach was used for qualitative data. In a further step, we conducted integrated analysis of quantitative and qualitative results using joint displays., Results: All HCPs of the four SPHC teams ( n  = 52) were invited to participate. HCPs participating in the survey ( n  = 32) and the focus groups ( n  = 7) saw potentials for implementing ePROM in palliative home care - as far as it is technically easy to handle and can be easily integrated into clinical practice., Conclusion: Successful use of ePROMs is affected by the possibility of easy integration into the teams' different structures and processes and the HCPs' perceptions of potentials regarding ePROM use in SPHC., Registration: The study is registered on clinicaltrials.org (NCT03879668)., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article., (© The Author(s), 2023.)

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., (© 2023. The Author(s).)

Background: The Integrated Palliative Care Outcome Scale (IPOS) validly and reliably measures symptoms and concerns of those receiving palliative care., Aim: To determine the equivalence of the paper version with an electronic version of the IPOS (eIPOS)., Design: Multicentre randomised crossover trial (NCT03879668) with a within-subject comparison of the two modes (washout period 30 min)., Setting/participants: Convenience sample of specialist inpatient and palliative home care patients aged over 18 years with cancer and non-cancer conditions was recruited. Scores were compared using intraclass correlation coefficients (ICC), Bland-Altman plots and via a mixed-effects analysis of variance., Results: Fifty patients were randomised to complete paper-electronic ( n  = 24) and electronic-paper ( n  = 26) IPOS with median age 69 years (range 24-95), 56% male, 16% non-cancer. The ICCs showed very high concordance for the total score (ICC 0.99, 95% CI 0.98-1.00), lowest ICCs being observed for symptoms 'Appetite loss' and 'Drowsiness' (ICC 0.95, 95% CI 0.92-0.97). Nine of seventeen items had ICCs above 0.98, as did all subscales. No statistically significant mode, order, age, and interaction effects were observed for IPOS total score and subscales, except for 'Communication' ( F mode  = 5.9, p  = 0.019). Fifty-eight percent preferred the electronic version. In the group 75+ years, 53% preferred the paper version. Only three entries in the free-text main problems differed between the versions., Conclusion: The very high equivalence in scores and free text between the IPOS and the eIPOS demonstrates that eIPOS is feasible and reliable in an older palliative population.

A specialized drug information service can assist professionals in collating relevant information and hereby help to increase medication safety. It is only helpful if the information provided can also be put into practice, though. The aim of this study was to evaluate the benefits of a specialized palliative care drug information service AMInfoPall and its users' experience. A web-based survey among health care professionals subsequent to inquiry between 07/2017 and 06/2018 was conducted. Twenty questions related to the use and transfer of received information into clinical practice and the result of the consecutive treatment. Invitations to participate/ reminders were sent out 8 and 11 days after receiving the requested information. The survey's response rate was 119/176 (68%). Most participants were physicians (54%), followed by pharmacists (34%) and nurses (10%), 33/119 (28%) worked in palliative home care teams, 29 (24%) on palliative care units, and 27 (23%) in retail pharmacies. 86/99 respondents had conducted an unsatisfiable literature search before contacting AMInfoPall. 113/119 (95%) were satisfied with the provided answer. Information was transferred into clinical practice as recommended in 65/119 (55%) cases and led to a change in patient status in 33%, mostly improvement. No change was reported in 31% and in 36% it was unclear. AMInfoPall was well accepted and mostly used by physicians and palliative home care services. It provided helpful support for decision-making. The obtained information was mostly well transferable into practice.