Benchmarking palliative care practices in neurooncology: a german perspective.

PURPOSE: To benchmark palliative care practices in neurooncology centers across Germany, evaluating the variability in palliative care integration, timing, and involvement in tumor board discussions. This study aims to identify gaps in care and contribute to the discourse on optimal palliative care strategies. METHODS: A survey targeting both German Cancer Society-certified and non-certified university neurooncology centers was conducted to explore palliative care frameworks and practices for neurooncological patients. The survey included questions on palliative care department availability, involvement in tumor boards, timing of palliative care integration, and use of standardized screening tools for assessing palliative burden and psycho-oncological distress. RESULTS: Of 57 centers contacted, 46 responded (81% response rate). Results indicate a dedicated palliative care department in 76.1% of centers, with palliative specialists participating in tumor board discussions at 34.8% of centers. Variability was noted in the initiation of palliative care, with early integration at the diagnosis stage in only 30.4% of centers. The survey highlighted a significant lack of standardized spiritual care assessments and minimal use of advanced care planning. Discrepancies were observed in the documentation and treatment of palliative care symptoms and social complaints, underscoring the need for comprehensive care approaches. CONCLUSION: The study highlights a diverse landscape of palliative care provision within German neurooncology centers, underscoring the need for more standardized practices and early integration of palliative care. It suggests the necessity for standardized protocols and guidelines to enhance palliative care's quality and uniformity, ultimately improving patient-centered care in neurooncology.

Palliative care for in-patient malignant glioma patients in Germany.

OBJECTIVE: Malignant gliomas impose a significant symptomatic burden on patients and their families. Current guidelines recommend palliative care for patients with advanced tumors within eight weeks of diagnosis, emphasizing early integration for malignant glioma cases. However, the utilization rate of palliative care for these patients in Germany remains unquantified. This study investigates the proportion of malignant glioma patients who either died in a hospital or were transferred to hospice care from 2019 to 2022, and the prevalence of in-patient specialized palliative care interventions. METHODS: In this cross-sectional, retrospective study, we analyzed data from the Institute for the Hospital Remuneration System (InEK GmbH, Siegburg, Germany), covering 2019 to 2022. We included patients with a primary or secondary diagnosis of C71 (malignant glioma) in our analysis. To refine our dataset, we identified cases with dual-coded primary and secondary diagnoses and excluded these to avoid duplication in our final tally. The data extraction process involved detailed scrutiny of hospital records to ascertain the frequency of hospital deaths, hospice transfers, and the provision of complex or specialized palliative care for patients with C71-coded diagnoses. Descriptive statistics and inferential analyses were employed to evaluate the trends and significance of the findings. RESULTS: From 2019 to 2022, of the 101,192 hospital cases involving malignant glioma patients, 6,129 (6% of all cases) resulted in in-hospital mortality, while 2,798 (2.8%) led to hospice transfers. Among these, 10,592 cases (10.5% of total) involved the administration of complex or specialized palliative medical care. This provision rate remained unchanged throughout the COVID-19 pandemic. Notably, significantly lower frequencies of complex or specialized palliative care implementation were observed in patients below 65 years (p < 0.0001) and in male patients (padjusted = 0.016). In cases of in-hospital mortality due to malignant gliomas, 2,479 out of 6,129 cases (40.4%) received specialized palliative care. CONCLUSION: Despite the poor prognosis and complex symptomatology associated with malignant gliomas, only a small proportion of affected patients received advanced palliative care. Specifically, only about 10% of hospitalized patients with malignant gliomas, and approximately 40% of those who succumb to the disease in hospital settings, were afforded complex or specialized palliative care. This discrepancy underscores an urgent need to expand palliative care access for this patient demographic. Additionally, it highlights the importance of further research to identify and address the barriers preventing wider implementation of palliative care in this context.

Impact of molecular alterations on quality of life and prognostic understanding over time in patients with incurable lung cancer: a multicenter, longitudinal, prospective cohort study.

PURPOSE: The purpose of this study is to investigate changes over time in quality of life (QoL) in incurable lung cancer patients and the impact of determinants like molecular alterations (MA). METHODS: In a prospective, longitudinal, multicentric study, we assessed QoL, symptom burden, psychological distress, unmet needs, and prognostic understanding of patients diagnosed with incurable lung cancer at the time of the diagnosis (T0) and after 3 (T1), 6 (T2) and 12 months (T3) using validated questionnaires like FACT-L, National Comprehensive Cancer Network (NCCN) Distress Thermometer (DT), PHQ-4, SCNS-SF-34, and SEIQoL. RESULTS: Two hundred seventeen patients were enrolled, 22 (10%) with reported MA. QoL scores improved over time, with a significant trend for DT, PHQ-4, and SCNS-SF-34. Significant determinants for stable or improving scores over time were survival > 6 months, performance status at the time of diagnosis, and presence of MA. Patients with MA showed better QoL scores (FACT-L at T1 104.4 vs 86.3; at T2 107.5 vs 90.0; at T3 100.9 vs 92.8) and lower psychological distress (NCCN DT at T1 3.3 vs 5; at T2 2.7 vs 4.5; at T3 3.7 vs 4.5; PHQ-4 at T1 2.3 vs 4.1; at T2 1.7 vs 3.6; at T3 2.2 vs 3.6), but also a worsening of the scores at 1 year and a higher percentage of inaccurate prognostic understanding (27 vs 17%) compared to patients without MA. CONCLUSION: Patients with tumors harboring MA are at risk of QoL deterioration during the course of the disease. Physicians should adapt their communication strategies in order to maintain or improve QoL.

Inpatient generalist palliative care during the SARS-CoV-2 pandemic - experiences, challenges and potential solutions from the perspective of health care workers.

BACKGROUND: The SARS-CoV-2 pandemic has presented major challenges to the health system. Despite high acute case numbers, patients without Covid-19 still need to be cared for. Due to the severity of the disease and a possible stressful overall situation, patients with palliative care needs also require comprehensive care during pandemic times. In addition to specialized palliative care facilities, this also takes place in non palliative care wards. In order to ensure this general palliative care also in pandemic times, the experience of the staff should be used. The aim of this paper is to examine challenges and possible solutions for general palliative care inpatients in relation to the care of seriously ill and dying patients and their relatives. METHODS: Qualitative semi-structured focus groups were conducted online for the study. Participants were staff from intensive care or isolation wards or from units where vulnerable patients (e.g. with cognitive impairment) are cared for. The focus groups were recorded and subsequently transcribed. The data material was analysed with the content structuring content analysis according to Kuckartz. RESULTS: Five focus groups with four to eight health care professionals with various backgrounds were conducted. Fifteen main categories with two to eight subcategories were identified. Based on frequency and the importance expressed by the focus groups, six categories were extracted as central aspects: visiting regulations, communication with relatives, hygiene measures, cooperation, determination of the patients will and the possibility to say good bye. CONCLUSION: The pandemic situation produced several challenges needing specific solutions in order to manage the care of seriously ill and dying patients. Especially visiting needs regulation to prevent social isolation and dying alone. Finding alternative communication ways as well as interprofessional and interdisciplinary cooperation is a precondition for individualised care of seriously ill and dying patients and their relatives. Measures preventing infections should be transparently communicated in hospitals.

[Applicability of QUIKS in conservatively treated tumor inpatients]. / Anwendbarkeit von QUIKS bei stationär konservativ behandelten Tumorpatienten.

BACKGROUND: Quality improvement in conservative pain management (QUIKS), a module for nonoperative patients in the QUIPS project was tested on a cohort of tumor patients regarding its applicability. MATERIAL AND METHODS: Conservatively treated inpatients at the University Hospital of Würzburg (UKW) were prospectively surveyed on the quality of pain management using the QUIKS outcome questionnaire (AZ 129/17, Ethics Committee at UKW). Information on therapy and demographics was taken from the hospital's internal documentation system. RESULTS: During the data collection period 100 conservatively treated inhouse tumor patients from different hospitals were included. Of the patients 74% required assistance in answering the questionnaire. Functional limitations or pain treatment-related side effects were present in 77% of the patients; the average pain level was 6 on the numerical rating scale. The most commonly reported type of pain was back pain and headache. Of the patients 18% received pain therapy with opioids and 26% with nonopioids, adjustment was made in 5% with opioids and in 44% with nonopioids and pain medicine specialists were consulted in 9% of cases. CONCLUSION: The application of the questionnaire was well accepted by the patients but required a high level of assistance in completing it. A high level of pain was observed during the hospital stay and the adjustment of pain therapy or the involvement of pain medicine specialists was rare. The interpretation of statements regarding the quality of tumor pain may be limited as other (pre-existing) pain entities, such as nontumor-associated pain or chronic tumor pain could not be clearly delineated.

Symptom Burden and Palliative Care Needs of Patients with Incurable Cancer at Diagnosis and During the Disease Course.

BACKGROUND: Although current guidelines advocate early integration of palliative care, symptom burden and palliative care needs of patients at diagnosis of incurable cancer and along the disease trajectory are understudied. MATERIAL AND METHODS: We assessed distress, symptom burden, quality of life, and supportive care needs in patients with newly diagnosed incurable cancer in a prospective longitudinal observational multicenter study. Patients were evaluated using validated self-report measures (National Comprehensive Cancer Network Distress Thermometer [DT], Functional Assessment of Cancer Therapy [FACT], Schedule for the Evaluation of Individual Quality of Life [SEIQoL-Q], Patients Health Questionnaire-4 [PHQ-4], modified Supportive Care Needs Survey [SCNS-SF-34]) at baseline (T0) and at 3 (T1), 6 (T2), and 12 months (T3) follow-up. RESULTS: From October 2014 to October 2016, 500 patients (219 women, 281 men; mean age 64.2 years) were recruited at 20 study sites in Germany following diagnosis of incurable metastatic, locally advanced, or recurrent lung (217), gastrointestinal (156), head and neck (55), gynecological (57), and skin (15) cancer. Patients reported significant distress (DT score ≥ 5) after diagnosis, which significantly decreased over time (T0: 67.2%, T1: 51.7%, T2: 47.9%, T3: 48.7%). The spectrum of reported symptoms was broad, with considerable variety between and within the cancer groups. Anxiety and depressiveness were most prevalent early in the disease course (T0: 30.8%, T1: 20.1%, T2: 14.7%, T3: 16.9%). The number of patients reporting unmet supportive care needs decreased over time (T0: 71.8 %, T1: 61.6%, T2: 58.1%, T3: 55.3%). CONCLUSION: Our study confirms a variable and mostly high symptom burden at the time of diagnosis of incurable cancer, suggesting early screening by using standardized tools and underlining the usefulness of early palliative care. IMPLICATIONS FOR PRACTICE: A better understanding of symptom burden and palliative care needs of patients with newly diagnosed incurable cancer may guide clinical practice and help to improve the quality of palliative care services. The results of this study provide important information for establishing palliative care programs and related guidelines. Distress, symptom burden, and the need for support vary and are often high at the time of diagnosis. These findings underscore the need for implementation of symptom screening as well as early palliative care services, starting at the time of diagnosis of incurable cancer and tailored according to patients' needs.

Yoga therapy to reduce fatigue in cancer: effects of reminder e-mails and long-term efficacy.

OBJECTIVE: To examine the efficacy of reminder e-mails to continue yoga therapy on practice frequency and fatigue in cancer patients and long-term effects of yoga on fatigue, depression, and quality of life. METHODOLOGY: One hundred two cancer patients who completed an 8-week yoga therapy were randomly allocated to two groups: reminder (N = 51) vs. no-reminder group (N = 51). After completing yoga therapy, the reminder group received weekly e-mails for 24 weeks, which reminded them of practicing yoga, whereas the no-reminder group did not. Primary outcomes were fatigue and practice frequency, and long-term outcomes were fatigue, depression, and quality of life. Data were assessed using questionnaires after yoga therapy (T1) and 6 months after completing yoga therapy (T2). RESULT: A significantly stronger reduction of general (p = 0.038, d = 0.42) and emotional fatigue (p = 0.004, d = 0.59) and a higher increase of practice frequency (p = 0.015, d = 0.52) between T1 and T2 were found for the reminder group compared to the no-reminder group. In the mediation model, practice frequency as a mediator partially explained the changes in emotional fatigue (indirect effect B = - 0.10). Long-term effects of yoga therapy regarding fatigue, depression, and quality of life were found (F > 7.46, p < 0.001, d > 0.54). CONCLUSION: Weekly reminder e-mails after yoga therapy can positively affect general and emotional fatigue and help cancer patients with fatigue establish a regular yoga practice at home. However, higher practice frequency did not lead to higher physical or cognitive fatigue improvement, suggesting other factors that mediate efficacy on physical or cognitive fatigue, such as mindfulness or side effects of therapy.

Yoga effectively reduces fatigue and symptoms of depression in patients with different types of cancer.

PURPOSE: Examine the effects of an 8-week yoga therapy on fatigue in patients with different types of cancer. METHODS: A total of 173 cancer patients suffering from mild to severe fatigue were randomly allocated to yoga intervention (n = 84) (IG) versus waitlist control group (CG) (n = 88). Yoga therapy consisted of eight weekly sessions with 60 min each. The primary outcome was self-reported fatigue symptoms. Secondary outcomes were symptoms of depression and quality of life (QoL). Data were assessed using questionnaires before (T0) and after yoga therapy for IG versus waiting period for CG (T1). RESULTS: A stronger reduction of general fatigue (P = .033), physical fatigue (P = .048), and depression (P < .001) as well as a stronger increase in QoL (P = .002) was found for patients who attended 7 or 8 sessions compared with controls. Within the yoga group, both higher attendance rate and lower T0-fatigue were significant predictors of lower T1-fatigue (P ≤ .001). Exploratory results revealed that women with breast cancer report a higher reduction of fatigue than women with other types of cancer (P = .016) after yoga therapy. CONCLUSION: The findings support the assumption that yoga therapy is useful to reduce cancer-related fatigue, especially for the physical aspects of fatigue. Women with breast cancer seem to benefit most, and higher attendance rate results in greater reduction of fatigue. TRIAL REGISTRATION: German Clinical Trials Register DRKS00016034.

Anxiety, depression and psychosocial needs are the most frequent concerns reported by patients: preliminary results of a comparative explorative analysis of two hospital-based palliative care teams in Germany and Japan.

In the partnership between the medical departments of Würzburg University, Germany, and Nagasaki University, Japan, palliative care is a relevant topic. The aim of the study was to perform a comparative analysis of the hospital-based palliative care teams in Würzburg (PCT-W) and Nagasaki (PCT-N). Survey of staff composition and retrospective analysis of PCT patient charts in both PCTs were conducted. Patients self-assessed their symptoms in PCT-W and in Radiation Oncology Würzburg (RO-W). The (negative) quality indicator 'percentage of deceased hospitalised patients with PCT contact for less than 3 days before death' (Earle in Int J Qual Health Care 17(6):505-509, 2005) was analysed. Both PCTs follow a multidisciplinary team approach. PCT-N saw 410 cancer patients versus 853 patients for PCT-W (22.8% non-cancer patients). The Eastern Cooperative Oncology Group Performance Status at first contact with PCT-N was 3 or 4 in 39.3% of patients versus 79.0% for PCT-W. PCT-N was engaged in co-management longer than PCT-W (mean 20.7 days, range 1-102 versus mean 4.9 days, range 1-48). The most frequent patient-reported psychological symptom was anxiety (family anxiety: 98.3% PCT-W and 88.7% RO-W, anxiety 97.9% PCT-W and 85.9% RO-W), followed by depression (98.2% PCT-W and 80.3% RO-W). In 14 of the 148 deceased patients, PCT-N contact was initiated less than 3 days before death (9.4%) versus 121 of the 729 deceased PCT-W patients (16.6%). Psychological needs are highly relevant in both Germany and Japan, with more than 85% anxiety and depression in patients in the Japanese IPOS validation study (Sakurai in Jpn J Clin Oncol 49(3):257-262, 2019). This should be taken into account when implementing PCTs.

Wishes and needs of nursing home residents and their relatives regarding end-of-life decision-making and care planning-A qualitative study.

AIMS AND OBJECTIVES: To explore wishes and needs, such as existing and preferred communication processes, of residents and relatives regarding medical and nursing planning at the end of life. BACKGROUND: Nursing home residents are a relevant target group for advance care planning (ACP) due to their high age and multimorbidity. Their relatives seem to be important partners in terms of communication and their documentation of wishes and needs. DESIGN: A qualitative descriptive design was used. METHODS: Thirty-two guideline-based interviews with nursing home residents (n = 24) and relatives (n = 8) were conducted in nursing homes in Germany (n = 7). All interviews were analysed by content-structured content analysis. The COREQ checklist was used to document reporting of the study. RESULTS: Residents particularly express wishes and needs regarding their health, like the desire to maintain or improve one's current state of health and to be active and mobile and also regarding their social situation, for example the well-being of relatives and beloved ones. A limited group of people was identified with whom residents spoke about issues such as preparedness and self-determination. These were mainly their relatives. Relatives themselves have a need for more communication. Various communication barriers could be identified. CONCLUSION: Residents express diverse and partly explicit wishes and needs. Although many of the respondents had already drafted advanced directives, the demand for offers of communication to plan ahead for the end of life remains clear. The results indicate the unconditional participation of relatives and people close to the residents, if they are available. RELEVANCE TO CLINICAL PRACTICE: Derivations for a target group-related ACP concept in the study region are identified. Besides the involvement of relatives, nurses could also be involved in the communication and decision-making process of residents in nursing homes under certain conditions.

Palliative care in everyday practice of radiation oncologists : Results from a web-based survey among medical members of the German Society for Radiation Oncology (DEGRO).

PURPOSE: Little is known about the attitudes of radiation oncologists towards palliative care, about their competences in this field, and about the collaboration with palliative care specialists. Our aim was to close this gap and understand more about the importance of an additional qualification in palliative care. METHODS: Medical members of the German Society for Radiation Oncology (DEGRO) were electronically surveyed during November-December 2016. RESULTS: The survey was emailed successfully to 1110 addressees, whereas a total of 205 questionnaires were eligible for analysis (response rate 18.4%). 55 (26.8%) of the respondents had an additional qualification in palliative care. Physicians who had an additional qualification in palliative care (PC qualification) reported palliative care needs for their patients more frequently than the other respondents (89.0 vs. 82.7%, p = 0.008). Furthermore, they were most likely to report a high confidence in palliative care competences, such as "communication skills & support for relatives" (83.6 vs. 59.3%, p = 0.013), "symptom control," and "pain management" (94.5 vs. 67.7%, p < 0.001 and 90.9 vs. 73.3%, p = 0.008, respectively). Respondents with a PC qualification more often involved palliative care specialists than the other respondents (63.3 vs. 39.3%, p = 0.007). Perceived main barriers regarding palliative care in radiation oncology included time aspects (9.2%), stigmata (8.5%), and the lack of interdisciplinary collaboration (8.5%). CONCLUSIONS: This analysis demonstrated that aspects of palliative care strongly impact on daily practice in radiation oncology. Additional qualifications and comprehensive training in palliative medicine may contribute to improved patient care in radiation oncology.

A brief, patient- and proxy-reported outcome measure in advanced illness: Validity, reliability and responsiveness of the Integrated Palliative care Outcome Scale (IPOS).

BACKGROUND: Few measures capture the complex symptoms and concerns of those receiving palliative care. AIM: To validate the Integrated Palliative care Outcome Scale, a measure underpinned by extensive psychometric development, by evaluating its validity, reliability and responsiveness to change. DESIGN: Concurrent, cross-cultural validation study of the Integrated Palliative care Outcome Scale - both (1) patient self-report and (2) staff proxy-report versions. We tested construct validity (factor analysis, known-group comparisons, and correlational analysis), reliability (internal consistency, agreement, and test-retest reliability), and responsiveness (through longitudinal evaluation of change). SETTING/PARTICIPANTS: In all, 376 adults receiving palliative care, and 161 clinicians, from a range of settings in the United Kingdom and Germany. RESULTS: We confirm a three-factor structure (Physical Symptoms, Emotional Symptoms and Communication/Practical Issues). Integrated Palliative care Outcome Scale shows strong ability to distinguish between clinically relevant groups; total Integrated Palliative care Outcome Scale and Integrated Palliative care Outcome Scale subscale scores were higher - reflecting more problems - in those patients with 'unstable' or 'deteriorating' versus 'stable' Phase of Illness (F = 15.1, p < 0.001). Good convergent and discriminant validity to hypothesised items and subscales of the Edmonton Symptom Assessment System and Functional Assessment of Cancer Therapy-General is demonstrated. The Integrated Palliative care Outcome Scale shows good internal consistency (α = 0.77) and acceptable to good test-retest reliability (60% of items kw > 0.60). Longitudinal validity in form of responsiveness to change is good. CONCLUSION: The Integrated Palliative care Outcome Scale is a valid and reliable outcome measure, both in patient self-report and staff proxy-report versions. It can assess and monitor symptoms and concerns in advanced illness, determine the impact of healthcare interventions, and demonstrate quality of care. This represents a major step forward internationally for palliative care outcome measurement.

[German S3 guideline for renal cell carcinoma : Presentation and discussion of essential aspects for the radiation oncologist]. / Die deutsche S3-Leitlinie zum Nierenzellkarzinom : Darstellung und Diskussion wesentlicher Aspekte für den Radioonkologen.

PURPOSE: We aim to introduce and discuss the statements and recommendations of the German S3 guideline on renal cell cancer for daily practice of radiation oncologists. METHODS: This report comprises indication, treatment decision, dose prescription and current literature including treatment of oligometastatic disease. RESULTS: According to different stages of the disease and the structure of the guideline we focus on five treatment situations and recommendations for decision making: (1) Neo-/adjuvant treatment before or after nephrectomy: No indication for radiotherapy. (2) Small renal mass: Stereotactic ablative radiotherapy is currently seen as experimental option due to small patient numbers reported in the literature. However, local tumor control achieved by SBRT appears favourable with >90% at 2 years. (3) Oligometastasis: Radiation treatment with higher local doses or stereotactic treatment is possible after interdisciplinary discussion. Indications for palliative (4) and symptomatic treatment (5) are not different compared to other tumor entities. CONCLUSION: Currently, there is no evidence-based indication for radiation treatment in the primary setting (adjuvant/neoadjuvant or definitive) of renal cell cancer. In the future stereotactic radiotherapy should have a stronger role in the treatment of medically inoperable patients with primary renal cell cancer and especially in the setting of oligometastasis.

Feasibility, acceptability and adaption of dignity therapy: a mixed methods study achieving 360° feedback.

BACKGROUND: Dignity Therapy (DT) is a short-term intervention to reduce psychological suffering in end-of-life care. Its strength lies in evidenced-based development and investigation. The aim of the present study is to investigate the feasibility of DT at German palliative care units (PCU), as well as the acceptability and adaption of a German version of the DT question protocol (DTQP). METHOD: A clinical multicentre mixed methods study, whereby patients and relatives provided quantitative (feedback questionnaires) and qualitative (cognitive interviews) data on the DT intervention. Before using the DTQP on patients, healthcare professionals (HCP) were invited to participate in cognitive interviews to provide input on DT. Therefore 360° feedback was achieved. Finally, the conducted DT interviews were examined. The study took place at two German PCUs (Mainz and Würzburg). Participating HCPs were physicians, psychologists, nurses and chaplains. Patients admitted to the PCUs were eligible to participate if they had a terminal illness and a life expectancy ranging from 2 weeks to 12 months. RESULTS: Out of 410 admitted patients, 72 were eligible and 30 (7.3% of all patients and 41.7% of eligible patients) participated. On average, 9 questions from the DTQP were used per DT interview. Subsequent cognitive interviews with patients produced four main categories of feedback (on the title, the question protocol, wording, and the questions actually asked). Finally, of the 30 participants, 19 completed the feedback questionnaire, as did 26 relatives. Of those, 18 patients and 24 relatives evaluated DT as helpful. CONCLUSIONS: DT is feasible for German PCUs. Our research yielded a validated German translation of the DTQP following EORTC guidelines and findings were reported according to the COREQ checklist for qualitative design. TRIAL REGISTRATION: The study was registered retrospectively on the 22nd of December 2017 at the German Clinical Trials Register ( DRKS00013627 ).

Patient-reported symptoms during radiotherapy : Clinically relevant symptom burden in patients treated with palliative and curative intent.

BACKGROUND: The benefits of patient-reported symptom assessment combined with integrated palliative care are well documented. This study assessed the symptom burden of palliative and curative-intent radiation oncology patients. PATIENTS AND METHODS: Prior to first consultation and at the end of RT, all adult cancer patients planned to receive fractionated percutaneous radiotherapy (RT) were asked to answer the Edmonton Symptom Assessment Scale (ESAS; nine symptoms from 0 = no symptoms to 10 = worst possible symptoms). Mean values were used for curative vs. palliative and pre-post comparisons, and the clinical relevance was evaluated (symptom values ≥ 4). RESULTS: Of 163 participating patients, 151 patients (90.9%) completed both surveys (116 curative and 35 palliative patients). Before beginning RT, 88.6% of palliative and 72.3% of curative patients showed at least one clinically relevant symptom. Curative patients most frequently named decreased general wellbeing (38.6%), followed by tiredness (35.0%), anxiety (32.4%), depression (30.0%), pain (26.3%), lack of appetite (23.5%), dyspnea (17.8%), drowsiness (8.0%) and nausea (6.1%). Palliative patients most frequently named decreased general wellbeing (62.8%), followed by pain (62.8%), tiredness (60.0%), lack of appetite (40.0%), anxiety (38.0%), depression (33.3%), dyspnea (28.5%), drowsiness (25.7%) and nausea (14.2%). At the end of RT, the proportion of curative and palliative patients with a clinically relevant symptom had increased significantly to 79.8 and 91.4%, respectively; whereas the proportion of patients reporting clinically relevant pain had decreased significantly (42.8 vs. 62.8%, respectively). Palliative patients had significantly increased tiredness. Curative patients reported significant increases in pain, tiredness, nausea, drowsiness, lack of appetite and restrictions in general wellbeing. CONCLUSION: Assessment of patient-reported symptoms was successfully realized in radiation oncology routine. Overall, both groups showed a high symptom burden. The results prove the need of systematic symptom assessment and programs for early integrated supportive and palliative care in radiation oncology.

Screening for symptom burden and supportive needs of patients with glioblastoma and brain metastases and their caregivers in relation to their use of specialized palliative care.

PURPOSE: Patients with brain tumors have a high symptom burden and multiple supportive needs. Needs of caregivers are often unattended. This study aims to determine screening-based symptom burden and supportive needs of patients and caregivers with regard to the use of specialized palliative care (SPC). METHODS: Seventy-nine patients with glioblastoma and brain metastases and 46 caregivers were screened with standardized questionnaires following diagnosis and 2 months later. The screening assessed symptom burden, quality of life (QoL), distress, and supportive needs. RESULTS: The most relevant symptoms were drowsiness, tiredness, and low well-being (53-58%). The most prevalent patient supportive needs were the need for information about available resources, the illness, and possible lifestyle changes (50-56%). The most prevalent caregiver needs were information about the illness, lifestyle changes, and about available resources (56-74%). Patients who received SCP and their caregivers had higher symptom burden and supportive needs than those without SPC. They reported moderate improvement in pain, distress, and QoL, while patients without SPC also improved their QoL, but had small to moderate deteriorations in pain, drowsiness, nauseas, well-being, and other problems. Distress of caregivers with SPC improved with moderate to large effect sizes but still was on a high level and remained stable for those without SPC. CONCLUSIONS: Symptom burden and supportive needs were high, but even more caregivers than patients expressed high distress and supportive needs. SPC appears to reach the target group, both patients and caregivers with elevated symptom burden. Targeted interventions are needed to improve tiredness and drowsiness.

Integrating Palliative Care Into Comprehensive Cancer Centers: Consensus-Based Development of Best Practice Recommendations.

BACKGROUND: International associations admit that specialized palliative care (SPC) is an obvious component of excellent cancer care. Nevertheless, gaps in integration at the international level have been identified. Recommendations for integrating SPC in clinical care, research, and education are needed, which are subject of the present study. MATERIALS AND METHODS: A Delphi study, with three written Delphi rounds, including a face-to-face-meeting with a multiprofessional expert panel (n = 52) working in SPC in 15 German Comprehensive Cancer Centers (CCCs) funded by the German Cancer Aid was initiated. Initial recommendations are built on evidence-based literature. Consensus was defined in advance with ≥80% agreement based on the question of whether each recommendation was unambiguously formulated, relevant, and realizable for a CCC. RESULTS: A total of 38 experts (73.1%) from 15 CCCs performed all three Delphi rounds. Consensus was achieved for 29 of 30 recommendations. High agreement related to having an organizationally and spatially independent palliative care unit (≥6 beds), a mobile multiprofessional SPC team, and cooperation with community-based SPC. Until round 3, an ongoing discussion was registered on hospice volunteers, a chair of palliative care, education in SPC among staff in emergency departments, and integration of SPC in decision-making processes such as tumor boards or consultation hours. Integration of SPC in decision-making processes was not consented by a low-rated feasibility (76.3%) due to staff shortage. CONCLUSION: Recommendations should be considered when developing standards for cancer center of excellence in Germany. Definition and implementation of indicators of integration of SPC in CCCs and evaluation of its effectiveness are current and future challenges. IMPLICATIONS FOR PRACTICE: General and specialized palliative care (SPC) is an integral part of comprehensive cancer care. However, significant diversity concerning the design of SPC in the German Comprehensive Cancer Center (CCC) Network led to the establishment of consensual best practice recommendations for integration of SPC into the clinical structures, processes, research, and education throughout the CCC network. The recommendations contribute to a greater awareness relating to the strategic direction and development of SPC in CCCs. The access to information about SPC and access to offers regarding SPC shall be facilitated by implementing the recommendations in the course of treatment of patients with cancer.

Preliminary results regarding automated identification of patients with a limited six-month survival prognosis using nursing assessment in uro-oncology patients.

INTRODUCTION: Contrary to current recommendations, palliative co-management of tumor patients often occurs late in daily clinical practice. Palliative care specialist (PCS) co-management should be considered at the latest after a 6-month prognosis has been presumed. Therefore, identifying patients with a limited prognosis is a reasonable measure. METHODS: Patients were identified using a screening tool for limited prognosis, which combined their tumor stage and data from the nursing anamnesis. In this retrospective study, a monocentric cohort of patients with urological malignancies-UICC (Union for International Cancer Control) stages III and IV - were enrolled from March to December 2019, with a 6-month follow-up period ending in May 2020. RESULTS: Most patients were male and suffered from prostate cancer. Patients with uro-oncological tumors dying within 6 months correlated significantly with the presence of repeated hospitalizations within three months, pain on admission, malnutrition, impaired breathing and reduced mobility (P < 0.001). The test was fair in quality (AUC 0.727) at a cut-point of five; a sensitivity of 97% and a specificity of 25% were obtained. The PPV was 0.64 and NPV was 0.82. DISCUSSION/CONCLUSION: We specifically identified the predictors of limited prognosis in urological cancer patients across several entities using an automated scoring system based on tumor stage and data from the nursing anamnesis. Therefore, we recognized hospitalization as an important transition point and determined nurses to be valuable partners in identifying unmet palliative care needs without additional technical, personnel or financial effort.

Successful use of Rectal Pregabalin for the Treatment of Chemotherapy-Induced Neuropathic Pain-a Case Report.

INTRODUCTION: A 65-year-old female patient could no longer take oral food or medications due to a duodenal occlusion associated with metastatic urothelial carcinoma. Her pre-existing chemotherapy-induced polyneuropathy had been well treated with pregabalin orally. METHODS: Since only preparations for oral use of pregabalin are available, pregabalin suppositories were compounded by the hospital pharmacy for rectal use in this patient. RESULTS: With the rectal administration, the treatment was successfully continued; we measured a good increase in serum levels and the symptoms improved significantly. DISCUSSION: Cancer patients often need to be treated with co-analgesics. At the end of life, treatment often cannot be continued due to lack of other than oral administration. Our case adds to the low evidence of pregabalin administered rectally.