Specialized Outpatient Palliative Care­Clinical Course and Predictors for Living at Home Until Death

BACKGROUND: Specialized outpatient palliative care (SOPC) is an important component of the palliative medicine care concept in Germany. Its purpose is to improve the out-of-hospital care of patients who cannot be adequately cared for by their primary care physicians and in the setting of general outpatient palliative care (GOPC). METHODS: In this retrospective analysis of anonymized routine treatment data, we analyzed the characteristics of SOPC patients overall and with specific diseases, and depicted them both numerically and graphically. We also carried out a regression analysis of the factors affecting whether or not patients will be able to die in a home environment. RESULTS: The analysis included data from 14 460 patients who were treated by 14 different SOPC teams in the North Rhine area of Germany in 2017 and 2018. The majority of patients who died were able to live at home until death (85.9%); only a small percentage died as inpatients (7.7%). The symptom burden shortly before death was less than at the beginning of treatment. The factors displaying a statistically significant association with dying at home were: more advanced age (aOR 0.96; 95% CI: [0.95; 0.96]), female sex (aOR 0.85; 95% CI: [0.74; 0.98]), and house calls at night (aOR 0.60; 95% CI: [0.51; 0.71]). CONCLUSION: SOPC met its declared objectives of limiting distressing symptoms and enabling patients to live at home until death.

Factors influencing length of survival in ambulatory palliative care - a cross sectional study based on secondary data.

BACKGROUND: Quality of life and patient self-determination are key elements in successful palliative care. To achieve these goals, a robust prediction of the remaining survival time is useful as it can provide patients and their relatives with information for individual goal setting including appropriate priorities. The Aim of our study was to assess factors that influence survival after enrollment into ambulatory palliative care. METHODS: In this cross-sectional, multicenter study (n = 14 study centers) clinical records of all palliative care patients who were treated in 2017 were extracted and underwent statistical analysis. The main outcome criterion was the association of survival time with clinical characteristics such as age, type of disease, symptoms and performance status. RESULTS: A total of 6282 cases were evaluated. Median time of survival was 26 days (95 % CI: 25-27 days). The strongest association for an increased hazard ratio was found for the following characteristics: moderate/severe weakness (aHR: 1.91; 95 % CI: 1.27-2.86) Karnofsky score 10-30 (aHR: 1.80; 95 % CI: 1.67-1.95), and age > 85 (aHR: 1.50; 95 % CI: 1.37-1.64). Surprisingly, type of disease (cancer vs. non-cancer) was not associated with a change in survival time (aHR: 1.03; 95 % CI: 0.96-1.10). CONCLUSIONS: In this cross-sectional study, the most relevant predictor for a short survival time in specialized ambulatory palliative care was the performance status while type of disease was irrelevant to survival.

[Specialized Outpatient Palliative Care: Results of a Cross-Sectional Study]. / Spezialisierte ambulante Palliativversorgung (SAPV) ­ Querschnittsanalyse von Symptomlast, Diagnosen und Sterbeort über 7 Jahre an einem Standort in NRW.

OBJECTIVE: Specialized outpatient palliative care (SAPV) is an important component in the care of people in their final days of life in Germany. The analysis of a representative cohort allows important conclusions to be drawn for improving the situation of people in palliative care in Germany. METHODS: We analyzed the routine data of 2691 palliative patients collected during the care of an SAPV team. Statistical analyses were performed using SPSS version 24. RESULTS: In SAPV, approximately three-fourths of patients died in their homes. Of the total of 2691 patients, 1972 suffered from a malignancy and 719 patients had a non-malignant, chronic disease. The age at first contact with SAPV was significantly higher in patients without malignancy. Patients with or without malignancy did not differ from each other in terms of quality of life (Karnofsky's score) or symptom frequency. Only disorientation was documented significantly more frequently in non-tumor patients and was also more pronounced. CONCLUSION: SAPV enables the fulfilment of the wish of most patients to die in their homes.

Cost of transfusion-dependent myelodysplastic syndrome (MDS) from a German payer's perspective.

No curative treatment exists for patients with myelodysplastic syndrome (MDS) besides allogeneic stem cell transplantation. Hence, palliative treatment is provided for a life time accruing high health care cost. As no study in cost of MDS exists in Germany, the objective of this study was to assess and analyze costs of transfusion-dependent low/intermediate-1-risk MDS in Germany from a payers' perspective. From seven centers, 116 low/intermediate-1-risk transfusion-dependent MDS patients with and without isolated 5q-deletion were identified. Claims data and patient records of the previous 5 years were used to collect health care utilization data retrospectively. Publicly available tariff books and remuneration schemes were applied to evaluate mean costs per year in Euro with 2007 as base year. The annual cost of MDS patients was estimated at 14,883. Subgroup analyses showed differences in patient's characteristics and outcomes among patients treated at a hospital-based vs. an office-based setting. Patients treated at the hospital-based registry show higher cost, whereas the reasons for that still need to be detected. Overall, per annum direct costs range from 12,543 (SD 12,967) to 24,957 (SD 36,399) in different subgroups of patients. In both groups, patients with 5q-deletion use more medication than those without deletion. Mean costs for medication in the office-based setting are 5,902 for patients with isolated 5q-deletion vs. 3,932 for patients with no deletion, respectively. MDS leads to a high health care utilization and resulting costs for the health care system which requires a detailed analysis of underlying services.

Treatment of myelodysplastic syndrome with isolated del(5q) including bands q31-q33 with a combination of all-trans-retinoic acid and tocopherol-alpha: a phase II study.

All-trans-retinoic acid (ATRA) alone or in combination with cytokines and vitamins has been shown to stimulate erythropoiesis in low-risk myelodysplastic syndromes (MDS). We performed a phase II study on 29 patients with MDS and isolated del(5q) including bands q31-q33 to determine the efficacy and safety of ATRA in combination with tocopherol-alpha. All patients had low/intermediate-1 risk MDS according to the international prognostic scoring system. They received 45 mg/m(2) ATRA on days 1 to 90, and 90 mg/m(2) on days 91 to 180. Tocopherol dosage was 600 IU three times daily. Twenty-four patients completed dose level I, and 12 patients dose level II. Eighty-six percent of patients experienced side effects. Thirty discontinued the drug treatment due to such events as skin reactions, cheilitis, conjunctivitis, joint pain, creatinine increase, or CNS symptoms. One patient (3%) achieved a major erythroid response resulting in transfusion independence throughout the study. Four patients (14%) achieved a minor erythroid response with >50% reduction of transfusion needs. None of the participants had a cytogenetic response. There was no significant improvement in quality of life among responding patients as measured by the European Organization for the Research and Treatment of Cancer (EORTC) quality of life questionnaire. Based on these results, the combination of ATRA and tocopherol-alpha is not recommended for the treatment of del(5q) MDS.