Comparison of inpatient and outpatient palliative sedation practice - A prospective observational study.

INTRODUCTION: Palliative sedation (PS) is an intrusive measure to relieve patients at the end of their life from otherwise untreatable symptoms. Intensive discussion of the advantages and limitations of palliative care with the patients and their relatives should precede the initiation of PS since PS is terminated by the patient's death in most cases. Drugs for PS are usually administered intravenously. Midazolam is widely used, either alone or in combination with other substances. PS can be conducted in both inpatient and outpatient settings; however, a quality analysis comparing both modalities was missing so far. PATIENTS AND METHODS: This prospective observational study collected data from patients undergoing PS inpatient at the palliative care unit (PCU, n = 26) or outpatient at a hospice (n = 2) or at home (specialized outpatient palliative care [SAPV], n = 31) between July 2017 and June 2018. Demographical data, indications for PS, and drug protocols were analyzed. The depth of sedation according to the Richmond Agitation Sedation Scale (RASS) and the degree of satisfaction of staff members and patient's relatives were included as parameters for quality assessment. RESULTS: Patients undergoing PS at the PCU were slightly younger compared to outpatients (hospice and SAPV combined). Most patients suffered from malignant diseases, and midazolam was the backbone of sedation for inpatients and outpatients. The median depth of sedation was between +1 and -3 according to the RASS with a trend to deeper sedation prior to death. The median degree of satisfaction was "good," scored by staff members and by patient's relatives. Significant differences between inpatients and outpatients were not seen in protocols, depth of sedation, and degree of satisfaction. CONCLUSION: The data support the thesis that PS is possible for inpatients and outpatients with comparable results. For choosing the best place for PS, other aspects such as patient's and relative's wishes, stress, and medical reasons should be considered.

Validation of the psychometric properties of a "Modified Version of the Hornheider Screening Instrument" (HSI-MV) using a sample of outpatient and inpatient skin tumor patients.

BACKGROUND: The basis for adequate psycho-oncological care is the identification of patients with psychosocial support needs. The German Working Group for Psychooncology also recommends the Hornheider Screening Instrument (HSI) for this purpose. The question, "Is anyone in your family particularly burdened by the hospital stay?" is intended to capture disease-related family stress. But is this item equally suitable for outpatients and inpatients? The study objective was to examine how replacing the original item affects the test performance of this modified version of the HSI and the frequency of psychosocial stress. PATIENTS AND METHODS: 92 outpatients and 98 inpatients with skin tumors assessed their psychosocial situation using different questionnaires. RESULTS: Compared to inpatients, less than half as many outpatients answered the item in the affirmative. If the question was replaced by: "Is someone in your family particularly burdened by your disease or the course of the disease?" this setting-related difference did not arise. The "Alternative item" and the "Modified version of the HIS" (HSI-MV) proved to be superior to the original item and the original HSI with regard to all examined criteria. CONCLUSIONS: The HSI-MV can be used as a reliable and valid instrument for the systematic assessment of psychosocial care needs in outpatient and inpatient settings. Depending on care capacity, a threshold of ≥ 5 or ≥ 4 is appropriate. In addition to screening, the desire for support should be enquired.

Psychosocial stress of dermatology inpatients and their relatives - Comparison of patients with and without cancer.

BACKGROUND: In the clinical treatment pathways of certified oncological centers, psychotherapeutic services are mandatory. Although patients with somatic, non-oncological illnesses show an equally high prevalence of psychosocial stress, these guidelines do not exist for the general hospital sector. Are these patients really less burdened and is psychological support only needed in individual cases? The example of dermatological patients will be used to show whether the need for psychosocial care and the desire for support vary between individuals with and without malignant disease. PATIENTS AND METHODS: Using the Hornheider screening instrument and distress thermometer, 216 dermatological inpatients assessed their psychosocial stress and that of a close relative. In addition, they were asked about their desire for support and preferred support provider. RESULTS: i) Patients without skin cancer were more frequently and more severely distressed than cancer patients. ii) Patients of both groups assessed their relatives to be approximately equally distressed. Compared with their own distress, cancer patients assessed their relatives as more frequently and on average more severely distressed. More than 50 % of all patients regarded their own disease as the cause of their relatives' distress. iii) The desire for support in both groups was about 18 %. iv) Doctors and psychologists were usually named as potential contact persons. CONCLUSIONS: The expansion of psychosocial support services for non-tumor patients and their relatives seems necessary. The establishment of appropriate screening methods should be considered. Further studies in other clinical areas are required.

Psychosocial distress and desire for support among skin cancer patients - impact of treatment setting.

BACKGROUND: Diagnosis and treatment of malignancies are frequently associated with a variety of problems for affected individuals and their relatives. In order to ensure adequate psycho-oncological and social care, it is recommended to routinely assess patients' psychosocial distress. While psychosocial services for inpatients have been expanded in recent years, the outpatient care structure in terms of psycho-oncological support is far from satisfactory, especially in Mecklenburg-Western Pomerania. We therefore set out to investigate the following questions: Does the need for psychosocial care vary in relation to (a) the treatment setting (inpatients vs. outpatients) and (b) the diagnosis? (c) Do patients experiencing psychological distress desire support? PATIENTS AND METHODS: We asked both inpatients and outpatients to rate their psychosocial situation using the Hornheide Questionnaire. Patients were also asked about their desire for psychological support and the preferred contact person. RESULTS: (a) The treatment setting had no impact on the need for psychosocial care and the desire for support. (b) Depending on the type of skin cancer, there were significant differences in the need for such care among the 251 patients surveyed. (c) Despite a certain discrepancy, there was a significant correlation between psychosocial distress (39.0 %; n = 98/251) and desire for support (14.3 %; n = 35/245). (d) Patients experiencing distress primarily chose physicians (n = 21) and psychologists (n = 20) as potential contact persons. CONCLUSIONS: (1) In addition to the level of distress, the desire for support should be inquired. (2) Recommendations by physicians represent an important means of access to psycho-oncological services. (3) Services for outpatient support should be expanded.

The Impact of Integrated Multidisciplinary Palliative Care Program on Symptoms in Patients at the Palliative Care Ward-An Audit and a Protocol of Prospective Controlled Investigation.

An integrated multidisciplinary palliative care (IMPC) program is a promising tool to improve symptom control in patients at the end of life. The aim was to study the feasibility of the IMPC program in patients at the palliative care (PC) ward. A retrospective audit, using the extended Edmonton Symptom Assessment Scale (ESAS), was conducted on the PC ward of the university hospital. Consecutive patients who were admitted for the IMPC program during 1 year were considered. One hundred forty-eight cases (93% with underlying cancer) were analyzed. The intensity of pain levels, nausea, vomiting, shortness of breath, and sleep disorders decreased at least by 50% ( P < .0001) during the 13 (median) days of IMPC. Integrated multidisciplinary PC program was associated with symptom improvements in patients at the PC ward. The information generated supports sample size calculation for a prospective controlled trial.

Psychosocial distress and desire for support among inpatients with skin cancer.

BACKGROUND: Regular assessment of psychosocial distress is an important component of adequate psycho-oncological and social support in cancer patients. To date, relevant studies on skin cancer patients have primarily included individuals with melanoma. OBJECTIVES: (1) Does the need for psychosocial support vary with the type of skin cancer? (2) Do mentally distressed patients desire support? (3) From the various individuals in the treatment team, whom do patients choose as potential contact person? PATIENTS UND METHODS: Inpatients with skin cancer were asked to self-assess their psychosocial situation using the Hornheide questionnaire. In addition, they were asked about their desire for psychosocial support and the preferred potential contact person. RESULTS: The need for support among the 116 patients surveyed varied significantly depending on the diagnosis (p = 0.007). However, the direct comparison between patients with melanoma (n = 38; 32.8 %) and squamous cell carcinoma (n = 9; 7.8 %) (p = 0.724) or other types of skin cancer (n = 20; 17.2 %) (p = 0.366) revealed no such difference. The prevalence of psychosocial distress (n = 49; 42.2 %) and the desire for support (n = 20; 17.4 %) showed considerable differences. Patients primarily chose a physician (n = 14/35) or a psychologist (n = 13/35) as potential "go-to" person for their mental distress. CONCLUSIONS: Apart from psychosocial distress, the desire for support should be assessed, and patients should be provided access to additional psychosocial care options. With respect to the need for psychosocial support, it does not seem to be justified to preferentially - or even exclusively - consider melanoma patients in clinical practice and research.

Psychosocial burden and desire for support in outpatients with skin cancer.

BACKGROUND: An important basis for adequate psycho-oncological and psychosocial care of cancer patients is the regular assessment of their psychosocial distress and thus their need for care. For this purpose, there are numerous questionnaires available. The objective of the present study was to assess whether distressed patients require professional support and which screening instrument outpatients with skin cancer prefer. PATIENTS AND METHODS: In a cross-sectional survey, we asked outpatients with skin cancer to fill out three questionnaires assessing psychosocial stress, and to indicate which one they considered most adequate. Patients were offered the following three instruments: Hornheide Questionnaire (27 items), Hornheide Screening Instrument (7 items), and the Distress Thermometer. In addition, we inquired about the patients' desire for support. RESULTS: (1) Comparing subjective distress and patients' declared desire for support revealed a marked divergence. While one-third of the 137 patients were identified as being in need of care, only 11.5% of the sample requested such support. (2) 63.7% of patients chose the long version of the Hornheide Questionnaire. CONCLUSIONS: In addition to their psychosocial burden, patients' desire for support should be assessed. Moreover, apart from screening tools, other ways to provide access to psychosocial care should be considered.

The Basic Documentation for Psycho-Oncology Short Form (PO-Bado SF)--an expert rating scale for distress screening: development and psychometric properties.

BACKGROUND: The aim of this study is to validate the Basic Documentation for Psycho-Oncology Short Form (PO-Bado SF), a six item interview-based expert rating scale for distress screening in cancer patients. METHODS: Using a heterogeneous multicenter study sample (n = 1551), we examined validity, reliability, and dimensionality of the PO-Bado SF. The Hospital Anxiety and Depression Scale (HADS), the Distress Thermometer, the Questionnaire on Stress in Cancer, and the Patient Health Questionnaire were used to investigate convergent validity. Confirmatory factor analysis was applied to address unidimensionality. An optimal cutoff point was determined by ROC analysis and the maximum of Youden's index. An additional study with n = 41 audio recorded PO-Bado SF interviews was carried out to assess inter-rater reliability. RESULTS: Mean age of the study sample was 64.0 (SD = 12.0), 42% were women. About 24% of the patients suffered from metastases. The one-factor solution was confirmed; internal consistency of the PO-Bado SF was high (α = 0.84). The PO-Bado SF total score correlated significantly with all psychosocial measures, the highest correlation was with the HADS total score (r = 0.64). Patients with severe disease conditions (metastases, psychological/psychiatric treatment in the past, low performance status) received higher distress ratings (p < 0.001). Using HADS total score (>13) as external criterion, an optimal PO-Bado SF cutoff score of >9 emerged (sensitivity 0.75; specificity 0.82). Inter-rater reliability was satisfactory for each of the six items (intra class correlation of 0.75 to 0.85). CONCLUSIONS: The PO-Bado SF is a short, reliable and valid expert rating scale to identify distressed cancer patients.

Implementation of Palliative Care in Clinical Practice in German Units for Allogeneic Stem Cell Transplantation: A Nationwide Survey.

Allogeneic stem cell transplantation (alloSCT) is a curative therapy for otherwise fatal diseases, however it is associated with a considerable morbidity and mortality. In consequence, it can be assumed that a considerable percentage of patients would benefit from high-quality palliative care (PC) during their course of disease. To assess the standard of PC in German transplant centers, a questionnaire was sent out to all German centers recognized from the EBMT membership list and the annually ZKRD report (n = 52). The response rate was not as high as expected with n = 27 (51,9%), even after reminding by phone calls or by e-mails. In brief, palliative care after allogeneic stem cell transplantation shows a wide variation in Germany. This is true for structures, processes and measures. A national standard for SCT-patients has not been established so far and there are no pre-conditions concerning palliative care after alloSCT for a certification by the EBMT according the JACIE standards. There is a considerable need for a crosslinking of alloSCT with PC. Clear standards should be established by the scientific societies concerning personnel, structure and processes.

Clinical course and end-of-life care in patients who have died after allogeneic stem cell transplantation.

PURPOSE: Allogeneic stem cell transplantation may cure approximately 50% of patients, however, a significant part of the other half might benefit from a high-quality palliative care medicine at the end of life. Somatic, psychic and spiritual needs of these patients may differ from those of patients suffering from incurable solid tumours and are not comprehensively evaluated so far. METHODS: To address this question, data from charts of 123 patients who have died after allogeneic stem cell transplantation were extracted. In detail, the time line of the clinical course, the symptoms, the administered drugs and other applied procedures were analysed. RESULTS: Approximately one half of the patients, who have died after stem cell transplantation, did not live more than 5 months. Two-thirds of patients died within 14 months after SCT. 28.5% of the patients could not be discharged after transplantation. However, a significant proportion had a low ECOG-score (0-1) prior to death, indicating a high degree of mobility. Major symptoms were weakness, fatigue and need for aid at daily activities. Severe pain, dyspnoea and obstipation, as known from patients suffering from advanced solid tumours, were rare. In consequence, use of opioids seemed to be less frequent than in patients with solid tumours. Measures of intensive care and i.v.-drug administration were applied to a significant proportion of patients. CONCLUSION: The present investigation indicates that the somatic, psychic and spiritual end-of-life-care after allogeneic stem cell transplantation could be optimised. A significant problem for the transplantation team seems to be the realisation of necessity to switch the curative concept into a palliative ambition. Requirements are a subsequent prospectively conducted investigation and an intensification of cooperation between transplant and palliative care teams.