Hospice And Palliative Care Evaluation Research Articles

Mobile Palliative Care Consultation Service (PCCS): Overview of Hospice and Palliative Care Evaluation (HOPE) Data on In-Patients With End-Stage Cancer, Multiple Sclerosis, and Noncancer, Nonneurological Disease From 4 PCCS Centers in Germany in 2013.

Context:During the last decade, numerous in-patient Palliative Care Consultation Service (PCCS) units were established throughout Germany.Objective:To provide an epidemiological overview on a whole year cohort of palliative patients in terms of demography, complaints, and therapy on admission to PCCS and the impact of PCCS treatment, and identify differences and similarities in different palliative patient subgroups.Methods:Chi-square, analysis of variance (ANOVA), Kruskal-Wallis followed by Games-Howell analysis of HOspice and Palliative care Evaluation (HOPE 2013) data on 4 PCCS centers and in total 919 patients, with solid tumors (237), metastatic cancer (397), leukemia and lymphoma (99), neurological (109, mostly multiple sclerosis [MS]), and noncancer, nonneurological disease (NCNND, 77).Results:A mostly uniform block of 3 cancer subgroups in terms of demographics, admission complaints, and initial pharmacological treatment diverged from the neurologic/MS disease subgroup. The “intermediate,” NCNND subgroup coalesced with the cancer or the neurologic/MS subgroups in part of the demographics, complaint, and drug parameters. Tetraparesis, requirement for nursing, and help with daily living were more, and pain, dyspnea, weakness, appetite loss, and fatigue were less frequent in neurologic patients compared with the cancer subgroups. Neurologic patients also showed more common use of coanalgetics and antidepressives, less opiates and nonopiate analgetics, corticosteroids, and antiemetics and antacids. NCNND patients had a particularly high rate of disorientation (48%) and death during PCCS (39%). In the 3 cancer subgroups, dyspnea, weakness, appetite loss, and anxiolytic use were less frequent in solid tumor patients. Palliative Care Consultation Service treatment was associated with reduction in symptom severity independent of subgroup entity. All listed differences were significant at P < .05 level.Conclusion:Despite divergence in demographics, symptoms, and medication, the data underline general usefulness of PCCS care in all end-stage patients and not only the cancer subgroups. Nevertheless, the strong differences revealed in the current study also underscore the need for a carefully tuned, disease-specific therapeutic approach to these subgroups of palliative patients.

Patients in palliative care-Development of a predictive model for anxiety using routine data.

IntroductionAnxiety is one of the most common psychological symptoms in patients in a palliative care situation. This study aims to develop a predictive model for anxiety using data from the standard documentation routine.MethodsData sets of palliative care patients collected by the German quality management benchmarking system called Hospice and Palliative Care Evaluation (HOPE) from 2007 to 2011 were randomly divided into a training set containing two-thirds of the data and a test set with the remaining one-third. We dichotomized anxiety levels, proxy rated by medical staff using the validated HOPE Symptom and Problem Checklist, into two groups with no or mild anxiety versus moderate or severe anxiety. Using the training set, a multivariable logistic regression model was developed by backward stepwise selection. Predictive accuracy was evaluated by the area under the receiver operating characteristic curve (AUC) based on the test set.ResultsAn analysis of 9924 data sets suggests a predictive model for anxiety in patients receiving palliative care which contains gender, age, ECOG, living situation, pain, nausea, dyspnea, loss of appetite, tiredness, need for assistance with activities of daily living, problems with organization of care, medication with sedatives/anxiolytics, antidepressants, antihypertensive drugs, laxatives, and antibiotics. It results in a fair predictive value (AUC = 0.72).ConclusionsRoutinely collected data providing individual-, disease- and therapy-related information contain valuable information that is useful for the prediction of anxiety risks in patients receiving palliative care. These findings could thus be advantageous for providing appropriate support for patients in palliative care settings and should receive special attention in future research.

Characteristics of Patients with Breathlessness

Background Breathlessness is a common and distressing symptom in patients with advanced life-limiting disease. The aim of this study was to describe demographical and clinical characteristics of patients with breathlessness in Germany. Methods We conducted a secondary analysis of hospice and palliative care inpatient data from 2006 to 2008. The Hospice and Palliative Care Evaluation (HOPE) is an annual prospective German survey, that includes a validated 16-item symptom-and-problem checklist (severity score 0 - 3). Characteristics of patients with or without breathlessness were compared in a pure descriptive manner. Interpretation of given p-values takes the error inflation due to multiple testing into account. Results Breathlessness was recorded in 2860/5320 (53.8 %) patients (mean age 67.2 years (SD 12.4), 51.4 % female, 93.6 % malignant disease (female/male lung cancer 15.7/29.5 %, breast cancer 20.3/0.3 %, colon 10.3/8.7 %). Breathless patients compared with those without breathless ness had a significantly worse functional status (ECOG 3 - 4: 78.4 % vs. 70.8 %, p < 0.001), suffered from a larger number (11.1 vs. 9.5, p < 0.001) of symptoms and the symptoms were of higher intensity (except confusion). Breathless patients had a higher risk to die during inpatient stay (43.5 % vs. 32.4 %, p < 0.001). Conclusion Based on this large sample of hospice and palliative care inpatients, breathlessness is associated with a high symptom burden and shortened survival. Breathless patients need more attention in health care.

Characteristics of patients with breathlessness - results of the german hospice and palliative care evaluation

Breathlessness is a common and distressing symptom in patients with advanced life-limiting disease. The aim of this study was to describe demographical and clinical characteristics of patients with breathlessness in Germany. We conducted a secondary analysis of hospice and palliative care inpatient data from 2006 to 2008. The Hospice and Palliative Care Evaluation (HOPE) is an annual prospective German survey, that includes a validated 16-item symptom-and-problem checklist (severity score 0-3). Characteristics of patients with or without breathlessness were compared in a pure descriptive manner. Interpretation of given p-values takes the error inflation due to multiple testing into account. Breathlessness was recorded in 2860/5320 (53.8 %) patients (mean age 67.2 years (SD 12.4), 51.4 % female, 93.6 % malignant disease (female / male lung cancer 15.7/29.5 %, breast cancer 20.3/0.3 %, colon 10.3/8.7 %)). Breathless patients compared with those without breathless ness had a significantly worse functional status (ECOG 3-4: 78.4 % vs. 70.8 %, p < 0.001), suffered from a larger number (11.1 vs. 9.5, p < 0.001) of symptoms and the symptoms were of higher intensity (except confusion). Breathless patients had a higher risk to die during inpatient stay (43.5 % vs. 32.4 %, p < 0.001). Based on this large sample of hospice and palliative care inpatients, breathlessness is associated with a high symptom burden and shortened survival. Breathless patients need more attention in health care.

Is breathlessness what the professional says it is? Analysis of patient and professionals’ assessments from a German nationwide register

Breathlessness is a common and distressing symptom in patients with advanced disease. Patients' self-report is deemed to be the most valid method of symptom assessment. When patients are not capable of self-assessment, professionals' assessment is often used as alternative but evidence on the validity is conflicting. The aim of this study was to compare self- and professionals' assessment of breathlessness regarding presence and severity in patients with advanced disease. Secondary analysis of a cross-sectional, multi-centre and nationwide register (HOspice and Palliative Care Evaluation (HOPE)). Documented inpatients from hospices and palliative care units from 2006 to 2008 who completed the self-assessed MInimal DOcumentation System (MIDOS) were included. Professionals' assessment were based on the integrated symptom and problem checklist (symptom scores, 0-3). Cohen's kappa (κ) was used to estimate the 'level of agreement' (LoA). Two thousand six hundred twenty-three patients (mean age, 66.9 (SD, 12.8); 54.4% female; median Eastern Cooperative Oncology Group score, 3; 95.9% with malignant disease) were analysed. Prevalence of breathlessness was 53.4% (1,398 patients) by professionals' and 53.1% (1,410 patients) by self-assessment. Presence was correctly evaluated by professionals in 80.9% of cases (sensitivity, 81.8%; specificity, 79.8%). Severity of breathlessness was correctly estimated in 65.7% of cases. LoA was good (κ=0.62) for the evaluation of presence of breathlessness and moderate (κ=0.5) for the estimation of severity. The proportion of over- or underestimated scores was similar. If patient's self-rating, the gold standard of symptom assessment, is not possible, professionals' assessment might be a valid alternative, at least for assessing the presence of breathlessness.

Trends in specialized palliative care for non-cancer patients in Germany —Data from the National Hospice and Palliative Care Evaluation (HOPE)

IntroductionThe proportion of non-cancer patients (NCs) admitted to palliative care (PC) services increases steadily. Nevertheless, little is known not only about their specific problems, needs that have to be met, but also about improvements that have taken place already. This analysis focuses on developments seen in NC management concerning end-of-life care. MethodsThe German Hospice and Palliative Care Evaluation (HOPE) is a national long-term quality assurance project providing information on PC patients. Data from yearly evaluation periods between 2007 and 2011 are used to investigate differences between NC patients documented from 2002 to 2005 in symptoms, treatment and general condition. ResultsThe proportion of NC patients increased from 3.5% (147/4182) to 8.1% (558/6854). NC patients, which are now referred to PC services, are younger, show less need for nursing support, die less often during inpatient stay. Overall a greater variety of diagnoses were found and patients suffer from less complex symptoms and problems at admission. ConclusionsDespite the continuously growing number of patients with non-malignant diseases, their number in PC services is still low. As small steps in the right direction have been taken, integrating PC ideas earlier into treatment of chronic diseases to improve quality of life of NCs during the final stages of their diseases will continue to challenge the health care system in terms of workload, need of more staff and further training of medical professionals dealing with NCs in the future.

Evaluation von 12 Pilotprojekten zur Verbesserung der ambulanten Palliativversorgung

With a priority programme the German Cancer Aid supported the development of quality-assured outpatient palliative care to cover the whole country. The 12 regional pilot projects funded with the aim to improve outpatient palliative care in different models and different frameworks were concurrently monitored and evaluated. The supported projects, starting and ending individually, documented all patients who were cared for using HOPE (Hospice and palliative care evaluation) and MIDOS (Minimal documentation system for palliative patients). Total data were analyzed for 3239 patients decriptively. In addition to the quantitative data the experiences of the projects were recorded in a number of workshops (2008, 2009, 2010, and 2012). In particular, the experiences reported in the final meeting in July 2012 were considered for this article as well as the final reports for the German Cancer Aid. In the quantitative evaluation 85.6% of 3239 palliative care patients had a cancer diagnosis. In all model projects the goal of a network with close cooperation of primary providers, social support, and outpatient and inpatient specialist services has been achieved. For all projects, the initial financing of the German Cancer Aid was extremely important, because contracts with health insurance funds were negotiated slowly, and could then be built on the experiences with the projects. The participants of the project-completion meeting emphasized the need to carry out a market analysis before starting palliative care organizations considering the different regional structures and target groups of patients. Education, training and continuing education programs contribute significantly to the network. A reliably funded coordination center/case management across all institutions is extremely important.

What Is Special about Patients with Lung Cancer and Pulmonary Metastases in Palliative Care? Results from a Nationwide Survey

Patients with advanced lung cancer constitute a special focus in palliative care not only for epidemiological or prognostic reasons, but also because their symptom burden is felt to be widespread and difficult to treat. This study describes disease-specific characteristics and the symptom burden of patients with advanced incurable lung cancer, comparing them with patients suffering from other diseaseentities. A secondary analysis of the nationwide Hospice and Palliative Care Evaluation (HOPE) was performed, by focussing on inpatient hospice and palliative care unit patients and by using descriptive methods. From 2006 to 2008, 5487 inpatients were registered, 874 of which were diagnosed with lung cancer and 1884 with pulmonary metastases. Symptoms such as weakness, tiredness, or pain were most prevalent in all subgroups. Dyspnea was significantly more prevalent in all patients with different kinds of pulmonary tumor manifestations; confusion was significantly more prevalent in patients with lung cancer. Dyspnea could not be treated as effectively as pain or nausea. Confusion and nursing problems worsened during the observation period. Dyspnea and confusion were associated with increased risk of death during the observational period. The symptom pattern of patients with lung cancer is characterized by dyspnea and confusion--symptoms that are difficult to treat until discharge and that imply a worse prognosis. Therefore, increased research on the pathophysiology and treatment of dyspnea and confusion is required, and efforts in advance care planning and anticipation of dyspnea and confusion as a critical symptom in patients with lung cancer should be reinforced.

Befinden von Palliativpatienten im Verlauf einer spezialisierten ambulanten oder stationären Versorgung

A major goal of palliative care is sustaining quality of life (QoL) for patients suffering from severe symptoms, which is determined by physical and psychological consequences of an illness as well as other factors, such as the meaning of life and family support. Patients have reported high levels of QoL despite worsening symptoms. The self-estimated QoL of patients receiving outpatient and inpatient palliative care was analyzed using retrospective data from the German Hospice and Palliative Care Evaluation (HOPE). A descriptive analysis of questionnaires given to 2,030 patients (1,616 inpatients, 414 outpatients) and their professional care takers was carried out assessing symptoms, well-being and care-related information. At the beginning of treatment inpatients had a higher symptom burden than outpatients. Reduced pain, tiredness and weakness and improved well-being allowed inpatients to be discharged. Outpatients suffering from severe dyspnea, constipation and anxiety were more likely to be admitted to hospital. Well-being was associated with symptom burden, weakness and tiredness in both self-evaluation and care-taker assessment particularly for outpatients. While tiredness and weakness influenced QoL especially for outpatients, patient-specific factors may surpass them in patient perception. To improve the QoL of palliative care patients, individual factors must be assessed in addition to symptom control.

Validation of the Symptom and Problem Checklist of the German Hospice and Palliative Care Evaluation (HOPE)

ContextThe German Hospice and Palliative Care Evaluation (HOPE) is a national, long-term quality assurance project. Every year, German hospice and palliative care institutions document a core data set for their patients for a period of three months. ObjectivesTo validate the multidimensional symptom and problem checklist (HOPE-SP-CL) of the core data set and report details on reliability and validity. MethodsData from yearly evaluation periods between 2002 and 2009 were used to calculate construct and convergent validity, internal consistency, test-retest reliability, and documentation discipline and acceptance of the core documentation system. ResultsThe HOPE-SP-CL includes items on physical, nursing, psychological, and social symptoms and problems. Factor analysis extracted four low to moderately intercorrelating factors with eigenvalues greater than 1.0 explaining 56% of the total variance. Discriminant validity of the HOPE-SP-CL showed good properties in detecting patient groups with different symptom intensities and overall symptom burden using the Eastern Cooperative Oncology Group performance status and primary cancer diagnosis as external validation criteria. The global sum score of the HOPE-SP-CL correlated most closely with the Palliative Outcome Scale staff version (r=0.750). Internal consistencies ranged between α=0.768–0.801 at three different times of assessment. Test-retest coefficients showed moderate to high correlations at one-week intervals. ConclusionAnalyses of reliability and validity of the HOPE-SP-CL showed satisfactory to good psychometric properties; therefore, the HOPE-SP-CL can be recommended for standard implementation in German hospice and palliative care institutions.

Wieviel Diagnostik braucht die Palliativmedizin?

Applying diagnostic techniques in palliative care (PC) requires a thorough balance between a physical, psychosocial (and financial) burden and its therapeutic relevance in far advanced diseases. The extent of diagnostic employment in PC, preferred techniques, application problems, its informative value and therapeutic significance still have to be described. The Hospice and Palliative Care Evaluation (HOPE) 2007 collected data from the application of microbiological and imaging techniques in German PC institutions. Furthermore, 70 consecutive ultrasound scans in our PC unit have been retrospectively analyzed.In 691 PC patients (from a total of 3184 in HOPE), diagnostic techniques (DIA) were applied and documented. In-patients with DIA (86,1 %) and the HOPE collective showed a comparable age and duration of hospital stay. Microbiological techniques contributed to 26,1 % of all documented in-patient investigations, imaging techniques 69,1 %. Ultrasound was the preferred imaging technique on PC units (67,1 %), whilst radiography, CT or MRI scans were rather employed on oncology wards. Nuclear imaging was rarely documented. In 80,8 %, imaging diagnostics were considered relevant for further treatment decisions (in-patients only); transportation problems and pain during imaging were relevant obstacles. In our own patient cohort, ultrasound was applied rather for general prognostic purposes, less often resulting in immediate therapeutic actions. Transportation problems could be almost entirely avoided by using a mobile ultrasound device. DIA in PC are applied independently of age or duration of hospital stay; its therapeutic significance is considered to be high; procedural problems may be resolvable. Therefore, this survey might challenge the tradition of low technology in PC.

Assessment of Distress with Physical and Psychological Symptoms of Patients in German Palliative Care Services

Background: Within the framework of the nationwide Hospice and Palliative Care Evaluation (HOPE), the German Basic Documentation for Psycho-oncology (PO-Bado) was used from 2004 to 2006 as an optional module in most participating palliative care services to investigate how patient distress due to symptom burdens in different palliative care settings should be assessed and how professional interventions could be derived. Patients and Methods: The distress scores of 3,317 PO-Bado records out of a total of 6,958 consecutive participants from 3 yearly samples of HOPE were evaluated descriptively and compared with a reference sample of cancer patients from both general and university hospitals. Results: The relative values of distress from physical and psychological symptoms were 0.57 and 0.37 (maximum of 1.0), respectively. In 38.2% of the patients, professional psychosocial interventions were indicated. Compared to the reference sample of cancer patients, palliative care patients clearly showed more specific physical distress, but psychological symptoms were varied; in particular, distress from cognitive impairment, helplessness and grief showed higher intensities in palliative care patients than in the reference group. Conclusions: The PO-Bado rating scales assessed high levels of distress, particularly from physical symptoms, in palliative care patients. A large percentage of palliative care patients required professional psychosocial support.

Subjective Definitions of Problems and Symptoms in Palliative Care

Background Data from the core data set of the Hospice and Palliative Care Evaluation (HOPE) from 1999 to 2001 demonstrated considerable variance in the incidence of patients’ symptoms and problems between participating services. This paper aims to investigate these differences more closely. Methods During the evaluation period of HOPE in 2002 a telephone survey with a representative of each participating unit was performed. Telephone interviews assessed the professionals’ definitions of selected symptoms and estimates of problem and symptom incidences. Content analysis was used to evaluate qualitative answers. Results Staff members rated pain, weakness, nausea/emesis as the most frequent physical symptoms; anxiety, depression and amentia as most frequent psychological symptoms; wound treatment, mobilisation and weakness as nursing problems and organisation of care settings, loneliness, demands of relatives the most common social needs. Staff members used a wide range of definitions for cachexia, weakness and depression. Discussion Standard definitions of symptoms and problems were lacking in the articulation of subjective staff members’ perspectives. Meaningful evaluation of multicentre surveys would require training in symptom assessment and classification in order to produce a common basis for documentation. Even though definitions differed widely, underlying concepts seemed to be compatible.

Non-cancer patients in specialized palliative care in Germany: What are the problems?

To determine the role of non-cancer palliative care in inpatient services in Germany, data from the Hospice and Palliative Care Evaluation (HOPE) were analysed. Since 1999, a three-month census has been conducted annually in German palliative care units. Pooled data from 2002–2005 were tested for differences between non-cancer patients (NCs) and cancer patients (Cs). A total of 4182 patients (NC: 3.5%; C: 96.5%) were documented; functional status (using Eastern Cooperative Oncology Group (ECOG) measures) in NCs was lower compared to Cs (p = 0.009). NCs suffered more often from dyspnoea (40%; C: 29%; p = 0.004), weakness (92,3%; C: 84,5%; p = 0.011) and tiredness (75.4%; C: 66.7%; p = 0.03) and less from nausea (17.1%; C: 28.9%; p = 0.002), vomiting (8.2%; C: 19.4%; p = 0.001) or loss of appetite (55.5%; C: 67.9%; p = 0.002). There were no differences in pain and constipation. Other problems (nursing, psychological) were more frequent for NCs, in particular the need for support in the activities of daily life (90.3%; C: 72.8%; p < 0.001) and disorientation/confusion (32.1%; C: 17.2%; p < 0.001). There were no differences in social problems. NCs are still rare in specialized inpatient palliative care institutions in Germany. The palliative care needs in patients with non-malignant disease will challenge the health care system as the workload for these services will grow over proportionally.