Symptom burden and relief in palliative care units of German Comprehensive Cancer Center and other hospitals.

PURPOSE: The National Hospice and Palliative Registry contains patient data from German hospice and palliative care facilities about symptoms. The aim of the study at hand is to differentiate symptom burden of patients in palliative care units between Comprehensive Cancer Center (CCC) and other hospitals regarding symptom burden and relief of patients in palliative care units. METHODS: The registry analysis provided data of patients in palliative care units (2014-2018). We analyzed characteristic and symptom-related data on 18 symptoms, with considerable symptom-burdened patients (moderate or severe). We followed a cancer (yes/no) and facility-specific descriptive analysis (f, %, µ, Mdn, SD, V, r) using SPSS. RESULTS: We evaluated 10,447 patient records (CCC: 4234 pts/non CCC 6,213 pts), 82% with a cancer diagnosis. For cancer patients, the mean age in CCC-affiliated palliative care units was 68 (SD 19-99) years, in others 73 (SD 23-104) years (p < 0.05; V = 0.2). The proportion of patients with significant symptom burden is lower in CCC-affiliated than in other palliative care units. The difference between facilities shows a significant weak effect in pain, vomiting and constipation, depressiveness, anxiety, and tension. The proportion of cases which symptom burden could be alleviated is higher in CCC-affiliated palliative care units with significant weak/medium effect in pain, nausea, vomiting, shortness of breath, constipation, wound care problems, depressiveness, anxiety, tension, confusion, and problems in organizing care. CONCLUSION: We found differences in symptom burden and symptom relief between CCC-affiliated and other palliative care units. CCCs should continue to feel responsible for sharing knowledge about symptom relief, such as through standard operating procedures and education.

European Cancer Organisation Essential Requirements for Quality Cancer Care: Adult glioma.

European Cancer Organisation Essential Requirements for Quality Cancer Care (ERQCCs) are explanations of the organisation and actions necessary to provide high-quality care to patients with a specific cancer type. They are compiled by a working group of European experts representing disciplines involved in cancer care, and provide oncology teams, patients, policymakers and managers with an overview of the essential requirements in any healthcare system. The focus here is on adult glioma. Gliomas make up approximately 80% of all primary malignant brain tumours. They are highly diverse and patients can face a unique cognitive, physical and psychosocial burden, so personalised treatments and support are essential. However, management of gliomas is currently very heterogeneous across Europe and there are only few formally-designated comprehensive cancer centres with brain tumour programmes. To address this, the ERQCC glioma expert group proposes frameworks and recommendations for high quality care, from diagnosis to treatment and survivorship. Wherever possible, glioma patients should be treated from diagnosis onwards in high volume neurosurgical or neuro-oncology centres. Multidisciplinary team working and collaboration is essential if patients' length and quality of life are to be optimised.

Palliative care as a digital working world (PALLADiUM) - A mixed-method research protocol.

BACKGROUND: In Palliative Care, actors from different professional backgrounds work together and exchange case-specific and expert knowledge and information. Since Palliative Care is traditionally distant from digitalization due to its holistically person-centered approach, there is a lack of suitable concepts enabling digitalization regarding multi-professional team processes. Yet, a digitalised information and collaboration environment geared to the requirements of palliative care and the needs of the members of the multi-professional team might facilitate communication and collaboration processes and improve information and knowledge flows. Taking this chance, the presented three-year project, PALLADiUM, aims to improve the effectiveness of Palliative Care teams by jointly sharing available inter-subjective knowledge and orientation-giving as well as action-guiding practical knowledge. Thus, PALLADiUM will explore the potentials and limitations of digitally supported communication and collaboration solutions. METHODS: PALLADiUM follows an open and iterative mixed methods approach. First, ethnographic methods - participant observations, interviews, and focus groups - aim to explore knowledge and information flow in investigating Palliative Care units as well as the requirements and barriers to digitalization. Second, to extend this body, the analysis of the historical hospital data provides quantitative insights. Condensing all findings results in a to-be work system. Adhering to the work systems transformation method, a technical prototype including artificial intelligence components will enhance the collaborative teamwork in the Palliative Care unit. DISCUSSION: PALLADiUM aims to deliver decisive new insights into the preconditions, processes, and success factors of the digitalization of a medical working environment as well as communication and collaboration processes in multi-professional teams. TRIAL REGISTRATION: The study was registered prospectively at DRKS (Deutsches Register Klinischer Studien) Registration-ID: DRKS0025356 Date of registration: 03.06.21.

[Health- and disease-related data of inpatients in palliative care units of the Comprehensive Cancer Centers and other hospitals in comparison-Data from the Hospice and Palliative Care Register]. / Gesundheits- und krankheitsbezogene Daten von Patienten auf Palliativstationen der onkologischen Spitzenzentren und anderer Krankenhäuser im Vergleich ­ Daten aus dem Hospiz- und Palliativregister.

BACKGROUND: The National Hospice and Palliative Registry is a database for palliative care facilities documenting a core data set for quality assurance and scientific evaluations. OBJECTIVES: The study aims identifying differences between patients in palliative care units treated in Comprehensive Cancer Centers (CCC) or other hospitals (OH) focussing on sociodemographic and health/disease-related characteristics. METHODS: Descriptive data analysis using IBM SPSS Statistics 21 included patients treated from 2014 to 2018. Comparisons included sociodemographic data, diagnoses, ECOG status and treatment duration. RESULTS: 12,922 patient data were analyzed (CCC n = 4975/OH = 7947). In CCCs 79.8% had a tumor diagnosis, in other hospitals 85.1%. The proportion of patients with ECOG 4 was higher in CCCs than in other hospitals. The average length of stay in CCCs was 12.6 days, in other hospitals 11.3 days (p = 0.023). CONCLUSIONS: Data show differences between patients in palliative care implicating CCCs treating more complex palliative care patients than other hospitals.

[Support for and involvement of family caregivers in Comprehensive Cancer Center - an Assessment of the Palliative Care Working Group within the network of Comprehensive Cancer Center funded by the German Cancer Aid]. / Mitbetreuung und Einbeziehung von Angehörigen in Comprehensive Cancer Centern ­ eine Erhebung der AG Palliativmedizin der von der Deutschen Krebshilfe geförderten Onkologischen Spitzenzentren.

BACKGROUND: According to current oncological guidelines, early integration of specialist palliative care (SPC) represents standard cancer care supporting not only the patients, but also their family caregivers. Data on the actual implementation in daily oncology practice in Germany are lacking. METHODS: The Palliative Care Working Group of the network of Comprehensive Cancer Centers certified by the German Cancer Aid (CCC) assessed the implementation of measures for family caregiver support and involvement within the CCC/within SPC in the CCC/local outside the CCC in all 17 CCC locations. RESULTS: In the CCC/in SPC psycho-oncological (100 %/94 %), social (94 %/100 %) and spiritual counselling of family caregivers (94 % each) as well as support for children with parental cancer (88 %/100 %) and information materials for family caregivers (88 % each) are well established. Training on nursing skills (77 %/94 %) and family conferences (59 %/88 %) are established more frequently within SPC than in the rest of the CCC. SOPs are rather rare (23 %/18 %) as well as screenings for family caregiver needs (0/24 %). Bereavement or self-help groups are with 82 % each more frequent locally outside the CCC. Psycho-oncological and social counselling as well as support for children with parental cancer were scored as most important (94 % each). For SPC, training on nursing skills and information materials were rated equally (94 % each). SOPs were rated as very/extremely important in 47 %/41 % and routine screening for family caregiver in 53 %/65 %. CONCLUSION: In correspondence to their importance, psychosocial and spiritual counselling and support for children with parental cancer are well implemented in CCC. In SPC, training on nursing skills and family conferences are also well implemented. SOPs for family caregiver support and involvement as well as routine screenings for family caregiver needs have to be implemented urgently in the CCC.

Adaptation of the Australian Palliative Care Phase concept to the German palliative care context: a mixed-methods approach using cognitive interviews and cross-sectional data.

BACKGROUND: Palliative care phases (stable, unstable, deteriorating, terminal and bereavement) are routinely used in Australia and the UK to describe the clinical situation of patients and their families and to evaluate the associated care plan. In addition, it serves as a benchmark developed by the Australian Palliative Care Outcome Collaboration (PCOC) and is used nationwide for comparisons between services. In Germany, the concept is not used consistently due to various translations. Furthermore, there is no nationwide systematic approach to routinely assess clinical outcomes in palliative care. The study aims to develop a German version of the palliative care phase definitions by adapting them culturally, and to examine the inter-rater reliability of the adjusted definitions with healthcare professionals. METHODS: Mixed-methods approach: Cognitive interview study using 'think aloud' and verbal probing techniques and a consecutive multi-center cross-sectional study with two clinicians independently assigning the phase definitions. Interviewees/participants were selected through convenience and purposive sampling in specialist palliative care inpatient units, advisory and community services and in three specialist palliative care units with doctors, nursing staff and allied health professionals. RESULTS: Fifteen interviews were conducted. Identified difficulties were: Some translated terms were 1) not self-explanatory (e.g. 'family/carer' or 'care plan') and (2) too limited to the medical dimension neglecting the holistic approach of palliative care. (3) Problems of comprehension regarding the concept in general occurred, e.g. in differentiating between the 'unstable' and 'deteriorating' phase. Inter-rater reliability was moderate (kappa = 0.44; 95% CI = 0.39-0.52). The assignment of the phase 'deteriorating' has caused the most difficulties. CONCLUSION: Overall, the adapted palliative care phases are suitable to use in the German specialist palliative care setting. However, the concept of the phases is not self-explanatory. To implement it nationwide for outcome measurement/benchmarking, it requires further education, on-the-job training and experience as well as the involvement of healthcare professionals in implementation process. For the use of international concepts in different healthcare systems, a deeper discussion and cultural adaptation is necessary besides the formal translation.

Standard Operating Procedures (SOPs) for Palliative Care in German Comprehensive Cancer Centers - an evaluation of the implementation status.

BACKGROUND: The working group for palliative medicine within the Comprehensive Cancer Center (CCC) network funded by the German Cancer Aid in Germany has developed and published 14 Standard Operating Procedures (SOPs) for palliative care in CCCs. This study analyzed to what extent these SOPs have been implemented in the clinical routine in the CCC network one year after their publication. METHODS: An online-based survey on the implementation status, limitations in daily practice and further themes was conducted between April and July 2018. In total, 125 health professionals in specialized palliative care from all 16 CCC locations were invited to participate. The data were analyzed descriptively using SPSS. RESULTS: The response rate was 52.8%. More than half of the respondents (57.6%) knew about the free availability of SOPs on the CCC network website. The extent to which each SOP was being used actively in practice by the survey respondents ranged from a low of 22.7% (for the "Fatigue" SOP) to a highest of 48.5% (for the "Palliative Sedation" and "Respiratory Distress" SOPs). The respondents became aware of the SOP through recommendations from colleagues, team meetings or from the head of the department. The SOPs "Respiratory distress of an adult palliative patient" and "Palliative sedation" were perceived as the most practically oriented and understandable. Barriers to use SOPs were mainly limited time resources and lack of knowledge of existence and availability. CONCLUSIONS: In practice, better knowledge about the SOPs and at the same time increased use can be achieved through systematic training or discussion of SOPs in regular team meetings. There is a need to take measures to optimize the implementation in clinical practice.

Implementation of Best Practice Recommendations for Palliative Care in German Comprehensive Cancer Centers.

BACKGROUND: From 2014 to 2017, the Palliative Medicine Working Group developed and published best practice recommendations for the integration of palliative care in Comprehensive Cancer Centers (CCCs) in Germany. To evaluate the implementation level of these recommendations in the CCCs an online survey was performed. Based on the results of this study, strategic tandem partnerships between CCCs should be built in order to foster further local development. MATERIALS AND METHODS: Directors of all CCCs were contacted by e-mail between December 2017 and February 2018. At the time of the survey, 15 CCCs were funded by the German Cancer Aid. The level of implementation of the recommendations in individual CCCs was established using a transtheoretical model. RESULTS: Between December 2017 and February 2018, all 15 contacted directors or their representatives of the CCCs took part in the survey. More than two thirds of the CCCs have a palliative service as well as a day clinic and palliative outpatient clinic. Regional networking and the provision of a palliative care unit were approved by all CCCs. CONCLUSION: The publication of best practice recommendations was a milestone for the integration of palliative care in the CCCs. The majority of the German CCCs already fulfill essential organizational and structural requirements. There is a particular need for optimization in the provision of a basic qualification for general palliative care and emergency admission personnel. IMPLICATIONS FOR PRACTICE: In 2017, the Palliative Medicine Working Group in the network of the German Comprehensive Cancer Centers (CCCs) published the best practice recommendations it had developed for the integration of palliative medicine in CCCs in Germany. In order to evaluate the level of implementation of the recommendations, an online survey of the CCC directors was established. The majority of German CCCs fulfil elementary organizational and structural requirements. However, there is still room for improvement in the provision of a basic qualification for general palliative care and emergency admission personnel.

[Palliative Care Teams in the German Comprehensive Cancer Centers]. / Palliativdienste in den deutschen onkologischen Spitzenzentren.

BACKGROUND: A palliative care team is recognized as a quality indicator in the consultation and care of patients with a tumor disease and is used nationally (92 %) in the National Cancer Institutes, model of the German Comprehensive Cancer Center (CCC). This begs the question of how palliative care teams are presently integrated into the CCCs. METHOD: From July to August 2017, a paper-based quantitative survey of 16 locations of the CCCs, supported to that date, gathered information on the existence, personnel situation, use and prospects of a specialized inpatient palliative care service. The survey was addressed to the heads of the palliative medical units of the CCCs. The data were evaluated in SPSS (frequency, median, mean, range). RESULTS: Fifteen CCCs took part in the survey (response 94 %). Thirteen of the fifteen CCCs have a service that also treats palliative patients. Twelve of thirteen CCCs of these are attainable during regular working hours (8a. m.-4 p. m. on weekdays). All services are staffed by physicians, additional eleven are staffed by nurses. Seven services are besides physicians and nurses joined by other professions. In 2016, 4482 median co-treatments were provided by the services, 80 % of these as additional charges without revenue and without codable OPS. In 2017, five centers plan to charge ZE 2017-133, two centers ZE 60 and three centers both intend to charge ZE 2017-133. CONCLUSIONS: Services for palliative patients exist generally in the German CCCs, but only half of them satisfy the condition of multi-professionality required for the fulfillment of the german guidelines. The new surcharge introduced in 2017, which can be charged on an hourly basis, could create improvements in this regard and contribute to cost recovery. Thus, contrary to the previous arrangement, essential and reasonable performances with a time of treatment of less than seven days can be charged.

Identifying the need for specialized palliative care in adult cancer patients - development and validation of a screening procedure based on proxy assessment by physicians and filter questions.

BACKGROUND: One challenge in caring for cancer patients with incurable disease is the adequate identification of those in need for specialized palliative care (SPC). The study's aim was to validate an easy to use phenomenological screening tool. METHODS: The German tool is based on the National Comprehensive Cancer Network (NCCN) Palliative Care guidelines and contains ten items in five domains that focus e.g. on diagnosis, functional status, complications, comorbidities, and palliative care relevant problems such as symptom management, distress, and support of family and team members. Sum score ranges from 0 to 14 (no need to great need). Assessment to identify SPC needs was done in university hospital wards between 1 and 08/2017 by health care professionals on admission of the patient if the disease was incurable and expected prognosis < 12 months. The Integrated Palliative Outcome Scale (IPOS, staff version), an outcome assessment instrument for palliative care that consists of ten items, served as external criterion; in sub samples inter-rater/test-retest were performed. RESULTS: Data from 208 patients with incurable disease and life expectancy < 12 months (54.8% female; average age 63.5 years, range 21-96) were assessed using the tool. The tool has good convergent validity; the correlation between the sum scores of IPOS and our tool showed a significant and substantial effect. The sum score was independent of the patient's age, gender and primary diagnosis. Patients who already were in contact with SPC had significantly higher screening scores than patients without. With a cut point of ≥ 5, 80.8% of the screened patients were in need for SPC. Cronbach's alpha was α = .600. Rater agreement (inter-rater, test-retest) varied between single items. Correlation coefficients showed significant substantial effects. CONCLUSIONS: This is the first validation of a screening procedure in German language identifying SPC needs of adult patients with advanced cancer and the first using filter questions as a pre-screening. Proxy assessment of SPC needs by physicians in cancer care settings is feasible and the suggested tool presents a valid instrument to trigger a PC consultation. TRIAL REGISTRATION: The study was not registered.

Knowledge and Self-Efficacy Assessment of Residents and Fellows Following Palliative Care Unit Rotation: A Pilot Study.

BACKGROUND: In Germany, some units of specialized palliative care (SPC) offer a 6- to 12-month rotation for resident physicians (RPs) and fellows from different specialties. OBJECTIVE: This pilot study aimed to evaluate feasibility of assessing palliative care knowledge (PCK) and palliative care self-efficacy (PCSE) using a paper-based questionnaire. METHODS: Palliative care knowledge and PCSE were assessed by introducing a score, followed by a descriptive analysis (determination of frequency, mean, median, and range) using nonparametric tests (χ2 test, Mann-Whitney U test). RESULTS: We assessed 17 RPs following SPC rotation and 16 board-certified specialists (BCSs) who had no experience in SPC from 3 German comprehensive cancer centers. Resident physicians were predominantly enrolled in residency programs of hematology and oncology (n = 6), anesthesiology (n = 6), and psychosomatic medicine (n = 3). Resident physicians rotated between year 1 and 8 of residency. Fifteen RPs (88%) had elected this rotation and 72% preferred 12-month duration. The total PCK score of PCK was 27 (RPs) and 24 (BCSs; P = .002). Mean PCSE scores were 46 (RPs) and 39 (BCSs; P = .016). Of 71% of RPs, only 27% of BCSs knew how support of hospice service was initiated ( P = .004). Participants rated the items as comprehensible (n = 24; 73%), relevant (n = 25; 76%) and the questionnaire as adequately long (n = 23; 70%). CONCLUSION: An improved PCK and PCSE were observed in physicians who rotated through an SPC unit; this resulted in an increased tangibility of local palliative care and hospice services. The questionnaire was comprehensible, relevant in terms of content, and adequate in length for a prospective multicenter survey.

Early palliative care: current status of integration within German comprehensive cancer centers.

PURPOSE: The aim of this study is to describe how models of early integration (EI) of specialized palliative care (SPC) are applied to German comprehensive cancer center (CCCs). METHODS: Heads of SPC departments of the 15 German CCCs were asked by email to describe the situation of early SPC in their CCC. The responses were analyzed using MAXQDA. RESULTS: Thirteen answers were allowed to be analyzed. Most of the department heads report that EI models of SPC are partially applied in the CCC (responses with "yes" or "partly," n = 10). Though they often describe that the models' implementation needs optimization and depends on temporary and financial restrictions or it has a pilot character. Models compromise structures like SPC unit, inpatient/outpatient SPC consultation team, and participation of members of SPC team in tumor boards. Moreover, other EI models of SPC quoted by the participants were standard operating procedures (SOP), screening tools, and information material for physicians, patients, and their related persons. CONCLUSIONS: Currently, German CCC models of EI of SPC are not applied in a standardized way. Approaches are still very diverse.

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.

Palliative care needs, symptoms, and treatment intensity along the disease trajectory in medical oncology outpatients: a retrospective chart review.

BACKGROUND: Early integration of palliative care into cancer disease management is beneficial for patients with advanced tumors. However, little is known about the association of palliative care interventions with symptom burden and treatment aggressiveness at the end of life (EoL). METHODS: To assess determinants of symptom burden and treatment intensity at the EoL, a retrospective chart review was conducted in university cancer clinic outpatients who died between July 2009 and June 2011. The objective was the correlation of place of death, palliative care utilization, prior EoL discussion, and social background (determinant variables) with symptom burden and treatment intensity (outcome variables). RESULTS: Ninety-six patients (61 men and 35 women) died; the mean age at death was 62.4 years (range 24-83). Mean duration of treatment was 17.9 months (range 1-129). Data on the last 14 days (3) of life were available for 62 (44) patients. Forty-seven patients received aggressive EoL care which was strongly associated with hospital death (p = 0.000, χ2 test). The 15 patients having used palliative care services or dying in a palliative care unit (PCU) had fewer symptoms (p = 0.006, t test) and interventions (p = 0.000, t test) at the EoL. Having addressed EoL issues was correlated with fewer procedures during the last 3 days (p = 0.035, t test). CONCLUSIONS: Most cancer patients receive aggressive EoL care interfering with quality of life. Despite limitations by small sample size and missing data, the results suggest that palliative care utilization is associated with reduced symptom burden and intensity of treatment at the EoL. Timely discussion of EoL issues may reduce the number of unnecessary interventions and facilitate referral to the PCU.

Recommending early integration of palliative care - does it work?

BACKGROUND: In 2006, our comprehensive cancer center decided to implement early integration (EI) of palliative care (PC) by (a) literally adopting the WHO definition of PC into cancer care guidelines and (b) providing a PC consulting team (PCST) to provide EI on in- and outpatient wards. The experience with this approach was assessed to identify shortcomings. METHODS: A retrospective systematic chart analysis of a 2-year period was performed. RESULTS: A total of 862 patients were treated (May 2006-April 2008). Many patients consulted by the PCST for the first time were already in a reduced performance status (ECOG 3 & 4: 40%) or experiencing burdening symptoms (i.e., dyspnoea 27%). After the first year (period A; "getting started"), the overall prevalence of symptoms identified on first PC contact decreased from seven to three, (p < 0.001) as well as surrogate measures for advanced disease (i.e., frailty: from 63% to 33%; CI: [-36%; -23%], p < 0.001). CONCLUSION: Surrogate measures (symptom burden, performance status) indicate that PC was integrated earlier in the course of the disease after a 1-year phase of "getting started" with EI. Yet, the WHO recommendation alone was too vague to successfully trigger EI of PC. Therefore, the authors advocate the provision of disease specific guidelines to institutionalize EI of PC. Such guidelines have been developed for 19 different malignancies and are presented separately.

Specifying WHO recommendation: moving toward disease-specific guidelines.

INTRODUCTION: The World Health Organization (WHO) explicitly recommends the integration of palliative care (PC) early in the disease trajectory as part of the WHO definition of PC. Our comprehensive cancer center decided: (1) to include this recommendation in the administrative directives for principles of cancer care and (2) to establish a PC hospital support team. The evaluation of this approach revealed that patients with lung cancer still received PC rather late in the course of the disease. Therefore, we decided to additionally develop disease-specific standard operating procedures (SOPs) to try to overcome these deficiencies. The first SOP was completed for patients with lung cancer. STANDARD OPERATING PROCEDURE (Consensus SOP): Specifically, the SOP states that: "Specialized PC is recommended regularly for all lung cancer patients without curative treatment options, specifically patients with (i) metastasized and inoperable or (ii) locally advanced and inoperable or (iii) relapsing lung cancer. Integration of PC is recommended simultaneously to starting tumor-specific therapy. In this context, initial PC should be delivered to the patient at the same place as specific treatment, which is the interdisciplinary outpatient unit of the Center of Integrated Oncology (CIO) or an oncological ward." DISCUSSION: This SOP for the first time presents disease-specific guidelines for PC integration into comprehensive (lung) cancer therapy by (1) defining "green flags" for early integration of PC and (2) recommending PC parallel to initiation of anticancer therapy. Furthermore, clear definitions are provided to delineate PC assignments. Such disease-specific algorithms should be helpful to further reduce uncertainty about the way PC can be integrated early in the course of the disease.

Implementing WHO recommendations for palliative care into routine lung cancer therapy: a feasibility project.

BACKGROUND: The World Health Organization (WHO) explicitly recommends the integration of palliative care (PC) early in the disease trajectory as part of the WHO definition of PC. Our comprehensive cancer centre decided to include this recommendation in the administrative directives for principles of cancer care. The aim of this study was to assess, for patients with lung cancer, (a) at what point in the disease trajectory the patients were first provided PC and (b) whether - over one year - an earlier integration of PC could be achieved. OBJECTIVE: A retrospective systematic chart analysis of a two year period was performed. We assumed that seeing patients relatively early during the course of the illness would be reflected by seeing patients that would be not already (i) in a reduced performance status, (ii) experiencing symptoms that are indicators for advanced disease (e.g., dyspnoea and pain) and (iii) close to death. Therefore, the first PC consultation for every lung cancer patient was analyzed to assess in what physical condition patients receive first PC consultation, what burdening symptoms they already experienced and how long the patients lived after their first consultations. RESULTS: Most patients were already in a reduced physical state, were experiencing burdening symptoms and many died shortly after the first PC consultation. After a one year period, the number of burdening symptoms identified at first PC consultation and the admissions to the in-patient PC was decreased while non-PC physicians increasingly requested PC support for psychosocial interventions. CONCLUSION: Though some degree of development towards a better understanding of PC competencies and the "early integration" approach could be demonstrated, the adoption of the WHO recommendation alone did not suffice to integrate PC into routine cancer care early in the course of the illness. Therefore, the development of disease specific guidelines is advocated by our working group.

Outcome indicators in palliative care--how to assess quality and success. Focus group and nominal group technique in Germany.

PURPOSE: The call for clinically relevant outcome criteria has been raised, as assessment of adequate quality of service providers is essential with increasing momentum in the development of palliative care in most European countries. The aim of this study is to investigate important dimensions and indicators for assessment and evaluation of palliative care from the perspective of multi-disciplinary German experts working over years in the field of palliative care. METHODS: A focus group, using the structured consensus method of the improved nominal group technique (INGT), with nine experts from different disciplines was conducted in Germany. RESULTS: An abundance of topics (16) were identified, pointing at the complexity of the issue. Main topics were: quality of life, needs assessments of patients and relatives, resource assessment, surveillance of decision-making processes, as well as spiritual well-being. The following properties were claimed as essential for outcome criteria sensitivity, without additional burden on patients, easy applicability, scientific validity, and helpful for communication within the team, ethical discussions as well as for quality management. CONCLUSIONS: The study identified topics considered important by experts in clinical practise. The discussions exposed the diversity of demands on outcome assessment put up by different stakeholder groups. This and the high number of relevant items show the complexity for the agreement on a unique set of outcome criteria. Further research considering other perspectives is needed.

A cost calculation model for specialist palliative care for patients with non-small cell lung cancer in a tertiary centre.

GOALS OF WORK: Five-year survival of patients with non-small cell lung cancer (NSCLC) is below 15%. Therefore, an early integration of palliative care according to the 2002 WHO definition is indispensable. In this paper, we describe methodical and financial aspects of prospective pricing of palliative care within a concept of integrated care for patients with NSCLC in Germany. MATERIALS AND METHODS: Four structures of palliative care services were defined (hospital support, home care, day care and in-patient care). Prospectively, resource use was estimated, using real cost data from the finance department of the University Hospital. Resource use was forecasted on the basis of operating experience, data of the national core documentation of palliative care patients and recommendations from the European Commission. RESULTS: Expected average hospital support team services were priced at 483 euros and budgeted for 10% (stage 1) to 90% (stage 4) of patients. Home care (60 visits, 4,573 euros) and day-care (5 visits) services were budgeted for between 5% (stage 1) and 30% (stage 4). The resulting prospective reimbursements range from 393 euros (stage 1) to 2,503 euros (stage 4). In-patient care was excluded from the prospective payments and reimbursed separately. CONCLUSIONS: For the first time, global reimbursements covering palliative care hospital support, home care and day care for patients with NSCLC were prospectively calculated and successfully negotiated. The contractual specification of palliative care services may contribute to transparency and quality in cancer care.