Utilization and quality of palliative care in patients with hematological and solid cancers: a population-based study.

BACKGROUND: Palliative care (PC) contributes to improved end-of-life care for patients with hematologic malignancies (HM) and solid tumors (ST) by addressing physical and psychological symptoms and spiritual needs. Research on PC in HM vs. ST patients is fragmented and suggests less use. METHODS: We analyzed claims data of all deceased members of a large German health insurance provider for the year before death. First, we analyzed the frequency and the beginning of different types of PC and compared patients with HM vs. ST. Second, we analyzed the adjusted impact of PC use on several end-of-life quality outcomes in patients with HM vs. ST. We performed simple and multiple (logistic) regression analysis, adjusted for relevant covariates, and standardized for age and sex. RESULTS: Of the 222,493 deceased cancer patients from 2016 to 2020, we included 209,321 in the first analysis and 165,020 in the second analysis. Patients with HM vs. ST received PC less often (40.4 vs. 55.6%) and later (34 vs. 50 days before death). PC use significantly improved all six quality indicators for good end-of-life care. HM patients had worse rates in five of the six indicators compared with ST patients. Interaction terms revealed that patients with ST derived greater benefit from PC in five of six quality indicators than those with HM. CONCLUSION: The data highlight the need to integrate PC more often, earlier, and more effectively into the care of patients with HM.

Palliative care for patients with hematologic malignancies in Germany: a nationwide survey on everyday practice and influencing factors from the perspective of treating physicians.

Integrating palliative care into the treatment of patients with advanced hematological malignancies (HM) remains challenging. To explore treating physicians' perspectives on current palliative care practice and to evaluate factors influencing integration, we conducted a nationwide online survey. Based on literature and expert review, the survey addressed the importance of palliative care, communication about life-threatening conditions, challenges in establishing goals of care, and factors influencing the integration of palliative care. 207 physicians treating patients with HM in Germany participated. We used standard descriptive statistics to analyze quantitative data and a content structuring approach. Most physicians considered palliative care in HM to be very important (60.6%) and discussed life-threatening conditions with more than half of their patients (52%), especially when goals of care were changed (87.0%) or when patients raised the topic (84.0%). Disease-related factors, different professional perspectives on prognosis, and patient hopes were the main barriers to changing goals of care, but collaboration with colleagues and multidisciplinary teams provided important support. Time constraints were identified as the main barrier to integrating palliative care. The majority worked well with palliative care teams. Referral processes and conditions were perceived as minor barriers. The study highlights the need to address barriers to integrating palliative care into the management of patients with advanced HM. Future research should aim at optimizing palliative care for patients with HM.

Knowledge, feelings, and willingness to use palliative care in cancer patients with hematologic malignancies and solid tumors: a prospective, cross-sectional study in a comprehensive cancer center in Germany.

PURPOSE: Patients with hematologic malignancies (HM) receive palliative care (PC) less often and later than patients with solid tumors (ST). Patients' lack of knowledge about PC and negative feelings about PC are barriers to their willingness to use PC. Is there a difference between patients with HM and ST in their knowledge and willingness to use PC? METHODS: Two hundred ten patients (85 HM, 125 ST) from an oncology day clinic at a university hospital participated in this cross-sectional, questionnaire-based survey. RESULTS: Patients with HM and ST had high knowledge and mainly positive feelings about PC. More than half of the patients answered that they would feel reassured by the use of PC, and one-third would feel anxious or hopeless. The majority of patients (58.3%) were willing to use PC. There are no significant differences between patients with HM and ST. In multiple regression analysis, perceived chance of cure and feelings of reassurance and anxiety are associated with willingness to use PC, but not with the HM/ST disease group. More than half (53.9%) of the participants would like the treating physician to choose the timing of a discussion about PC. CONCLUSION: Our study shows a high level of knowledge and relatively positive feelings of patients about PC, with no differences between patients with HM or ST. They expect their treating physician to initiate communication about PC. Communication should include the patient's feelings about PC and their chances of a cure.

[Utilization of palliative care at the end of life in Germany: temporal trend (2016-2019) and regional variability]. / Inanspruchnahme von Palliativversorgung am Lebensende in Deutschland: zeitlicher Verlauf (2016­2019) und regionale Variabilität.

BACKGROUND: In Germany, palliative care (PC) is provided on a homecare, inpatient, general, and specialized basis. Since little is currently known about the temporal course and regional differences in the forms of care, the present study was aimed to investigate this. METHOD: In a retrospective routine data study with 417,405 BARMER-insured persons who died between 2016 and 2019, we determined the utilization rates of primary PC (PPC), specially qualified and coordinated palliative homecare (PPC+), specialized palliative homecare (SPHC), inpatient PC, and hospice care on the basis of services billed at least once in the last year of life. We calculated time trends and regional variability and controlled for needs-related patient characteristics and access-related county of community characteristics. RESULTS: From 2016 to 2019, total PC increased from 33.8 to 36.2%, SPHC from 13.3 to 16.0% (max: Rhineland-Palatinate), and inpatient PC from 8.9 to 9.9% (max: Thuringia). PPC decreased from 25.8 to 23.9% (min: Brandenburg) and PPC+ came in at 4.4% (max: Saarland) in 2019. Hospice care remained constant at 3.4%. Regional variability in utilization rates remained high, increased for PPC and inpatient PC from 2016 to 2019, and decreased for SPHC and hospice care. The regional differences were also evident after adjustment. CONCLUSION: Increasingly more SPHC, less PPC, and high regional variability, which cannot be explained by demand- or access-related characteristics, indicate that the use of PC forms is oriented less to demand than to regionally available care capacities. In view of the growing need for palliative care due to demographic factors and decreasing personnel resources, this development must be viewed critically.

Prepared to Accompany the End of Life during Pandemics in Nursing Homes.

BACKGROUND: The COVID-19 pandemic confronted nursing homes with a variety of challenges to ensure the provision of palliative care for residents. PallPan-Implement aimed to adapt the recommendations of the National Strategy for the Care of Seriously Ill, Dying Adults and their Families in Times of Pandemic (PALLPAN) in such a way that nursing facilities can use and implement them. METHODS: Based on 33 PALLPAN recommendations, we developed a questionnaire, conducted a pilot implementation for selected nursing homes, and asked for qualitative feedback. RESULTS: The developed questionnaire contains 22 main questions. A three-stage pilot implementation with an introductory event, processing phase, and evaluation event took place in seven facilities. The facilities evaluated the developed questionnaire as helpful. Feedback from the facilities identified three major categories: (a) requirements for facilities should be realistic to avoid frustration, (b) the creation of a pandemic plan for palliative care only is impractical, (c) measures for the psychosocial support of staff is particularly necessary, but was perceived as difficult to implement. CONCLUSIONS: The practical implementation of recommendations requires a concept and material tailored to facilities and areas. The strategy of PallPan Implement developed in this project appears to be target-oriented, well-received, and can be recommended for further implementation.

["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.

[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.

'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.