Midazolam Indications and Dosing in Palliative Medicine: Results from a Multinational Survey.

Despite sparse evidence and limited guidance on indications, use, and dosing, midazolam is widely used in palliative care. We aimed to describe and compare the use of midazolam in three different countries to improve clinical practice in palliative care. We performed an online survey among palliative care physicians in Norway, Denmark, and the United Kingdom (UK). The focus was indications, dosing, administration, and concomitant drugs. A web-based questionnaire was distributed to members of the respective national palliative medicine associations. The total response rate was 9.4%. Practices in the UK, Norway, and Denmark were overall similar regarding the indications of midazolam for anxiety, dyspnoea, and pain treatment in combination with opioids. However, physicians in the UK used a higher starting dose for anxiety, dyspnoea, and pain treatment compared to Norway and Denmark, as well as a higher maximum dose. Danish physicians preferred, to a higher degree, on-demand midazolam administration. Despite practice similarities in the UK, Norway, and Denmark, differences exist for midazolam dosing and administration in palliative medicine. We demonstrated a lack of consensus on how midazolam should be used in palliative care, setting the stage for future studies on the topic.

Developing and Evaluating a Care Pathway for Improving Palliative Care in Western Norway.

Background: To operationalize the palliative care approach and improve care across services, a palliative care pathway (PCP) was developed in Western Norway. The PCP is an evidence-based framework for palliative care assessment and interventions in the form of a web-based flowchart. Measures: An electronic questionnaire aimed at health care professionals (HCPs) examined perceived usability and content. We registered PCP webpage activity and conducted an evaluation seminar and group interviews. Intervention: The pathway was developed (2015) and piloted in two cities (2017-2018/2020). Outcomes: HCPs perceived that the PCP contributed to increased palliative care knowledge and skills and worked as a reference and educational tool. They found the PCP easily accessible but asked for a search option and easier webpage navigation. Conclusions/Lessons Learned: An available PCP can support a common language for palliative care in different settings and enhance patient-centered care. HCPs need time to familiarize themselves with its content and use.

Use of peripherally inserted central venous catheters and midline catheters for palliative care in patients with cancer: a systematic review.

BACKGROUND: Peripherally inserted central catheters (PICCs) and midline catheters (MCs) may offer convenient intravenous access, but evidence to support their place in palliative care is limited. This review aimed to assess catheter indications, utilization, complications, dwell time, and patient experiences in cancer patients receiving palliative care. METHODS: A systematic search for studies on catheter utilization for supportive or symptom treatment was conducted in Medline, Embase, CINAHL, Web of Science, Cochrane, and CENTRAL databases. Studies with a study population or a subgroup of palliative care cancer patients were included. Study quality was assessed using the Effective Public Health Practice Quality assessment tool. RESULTS: Of 7631 unique titles, 17 articles were examined in detail, all published between 2002 and 2022. Median catheter dwell time varied from 15 to 194 days, the longest when utilized for home parenteral nutrition. For pain and symptom management, the typical duration was 2-4 weeks, often until the patient's death. Complication rates were minimal, with thrombosis, infections, and occlusion ranging from 0 to 2.46 incidents per 1000 catheter days. In studies from palliative care services, patients reported minimal distress during procedures and high user satisfaction. Quality of life assessments post-procedure improved, possibly influenced by concurrent specialist palliative care provision. All studies were assessed to be of moderate or weak quality. CONCLUSION: PICC and MC are safe and valuable tools in palliative care cancer patients who would benefit from intravenous access for symptom management. Further studies are needed to clarify indications for PICC or MC in palliative care.

Facilitators and barriers of implementing end-of-life care volunteering in a hospital in five European countries: the iLIVE study.

BACKGROUND: End-of-life (EoL) care volunteers in hospitals are a novel approach to support patients and their close ones. The iLIVE Volunteer Study supported hospital volunteer coordinators from five European countries to design and implement an EoL care volunteer service on general wards in their hospitals. This study aimed to identify and explore barriers and facilitators to the implementation of EoL care volunteer services in the five hospitals. METHODS: Volunteer coordinators (VCs) from the Netherlands (NL), Norway (NO), Slovenia (SI), Spain (ES) and United Kingdom (UK) participated in a focus group interview and subsequent in-depth one-to-one interviews. A theory-inspired framework based on the five domains of the Consolidated Framework for Implementation Research (CFIR) was used for data collection and analysis. Results from the focus group were depicted in radar charts per hospital. RESULTS: Barriers across all hospitals were the COVID-19 pandemic delaying the implementation process, and the lack of recognition of the added value of EoL care volunteers by hospital staff. Site-specific barriers were struggles with promoting the service in a highly structured setting with many stakeholders (NL), negative views among nurses on hospital volunteering (NL, NO), a lack of support from healthcare professionals and the management (SI, ES), and uncertainty about their role in implementation among VCs (ES). Site-specific facilitators were training of volunteers (NO, SI, NL), involving volunteers in promoting the service (NO), and education and awareness for healthcare professionals about the role and boundaries of volunteers (UK). CONCLUSION: Establishing a comprehensive EoL care volunteer service for patients in non-specialist palliative care wards involves multiple considerations including training, creating awareness and ensuring management support. Implementation requires involvement of stakeholders in a way that enables medical EoL care and volunteering to co-exist. Further research is needed to explore how trust and equal partnerships between volunteers and professional staff can be built and sustained. TRIAL REGISTRATION: NCT04678310. Registered 21/12/2020.

What do bereaved relatives of cancer patients dying in hospital want to tell us? Analysis of free-text comments from the International Care of the Dying Evaluation (i-CODE) survey: a mixed methods approach.

PURPOSE: We conducted an international survey of bereaved relatives of cancer patients dying in hospitals in seven countries, with the aim to assess and improve the quality of care. The survey used the i-CODE (International Care of the Dying Evaluation) questionnaire. Here, we report findings from the free-text comments submitted with the questionnaires. We explored for topic areas which would potentially be important for improving the quality of care. Further, we examined who reported free-texts and in what way, to reduce bias without ignoring the function the free-texts may have for those contributing. METHODS: We used a combined qualitative-quantitative approach: logistic regression analysis to study the effect of respondents' socio-demographic characteristics on the probability of free-texts contributions and thematic analysis to understand the free-text meaning. The primary survey outcomes, (1) how frequently the dying person was treated with dignity and respect and (2) support for the relative, were related to free-text content. RESULTS: In total, 914 questionnaires were submitted; 457/914 (50%) contained free-text comments. We found no socio-demographic differences between the respondents providing free-texts and those who did not. We discovered different types of free-texts ("feedback," "narrative," "self-revelation") containing themes of which "continuity of care," "the one person who can make a difference," and "the importance of being a companion to the dying" represent care dimensions supplementing the questionnaire items. A free-text type of grateful feedback was associated with well perceived support for the relative. CONCLUSION: Bereaved relatives used the free-texts to report details related to i-CODE items and to dimensions otherwise not represented. They highlighted the importance of the perceived support from human interaction between staff and the dying patient and themselves; and that more than professional competence alone, personal, meaningful interactions have profound importance.

Characteristics and fate of patients with rectal cancer not entering a curative-intent treatment pathway: A complete nationwide registry cohort of 3,304 patients.

BACKGROUND: Treatment options for advanced and metastatic rectal cancer have increased during the past decades. However, a considerable proportion of the patients are not eligible for curative treatment, and data on this subset are scarce from a population-based perspective. This study aimed to describe treatment pathways and survival in a national cohort of patients with primary stage IV rectal cancer or stage I-III rectal cancer not eligible for curative treatment. METHODS: A national cohort of all patients reported 2008-2015 to the Norwegian Colorectal Cancer Registry with primary metastatic rectal cancer or who did not undergo curative resections for stage I-III rectal cancer was studied with regard to patient characteristics, treatments, and survival. RESULTS: Of 8291 patients diagnosed with rectal cancer, 3304 (39.9%) were eligible for analysis. The majority (76.8%) had metastatic disease, and 23.2% did not undergo curative resections for other reasons. We identified four main treatment journeys: no tumour-directed treatment, 25.1%; resection of the primary tumour, 44.6%; oncological treatment, 28.4%; and R0 resection of the primary tumour and metastases, 1.9%; these translated into ten different treatment pathways. Survival differed considerably between a median of 5.3 months for M1 disease with non-tumour-directed treatment to a five-year survival of 67% for M1 with R0 resection. CONCLUSION: Almost 40% of all patients with rectal cancer did not enter a curative-intent treatment pathway. The patient journeys and outcomes varied greatly. This large but understudied population warrants further in-depth analyses of treatment efficacy and effects on quality of life.

Validation of 'Care Of the Dying Evaluation' (CODETM) within an international study exploring bereaved relatives' perceptions about quality of care in the last days of life.

CONTEXT: Assessing quality of care provided during the dying phase using validated tools aids quality assurance and recognizes unmet need. OBJECTIVE: To assess construct validity and internal consistency of 'Care Of the Dying Evaluation' (CODETM) within an international context. METHODS: Post-bereavement survey (August 2017 to September 2018) using CODETM. Respondents were next-of-kin to adult patients (≥ 18 years old) with cancer who had an 'expected' death within 22 study site hospitals in 7 countries: Argentina, Brazil, Germany, Norway, Poland, United Kingdom, Uruguay. Exploratory and Confirmatory Factor Analysis (EFA and CFA) were conducted, and internal reliability was assessed using Cronbach alpha (α). Known group validity was assessed by ability to discriminate quality of care based in place (Palliative Care Units (PCUs)) and country (Poland, where most deaths were in PCUs) of care. Differences were quantified using effect sizes (ES). RESULTS: A 914 CODETM questionnaires completed (54% response rate). 527 (58%) male deceased patients; 610 (67%) next-of-kin female who were most commonly the 'spouse/partner' (411, 45%). EFA identified 4 factors: 'Overall care,' 'Communication and support,' 'Trust, respect and dignity,' and 'Symptom management' with good reliability scores (α = 0.628 - 0.862). CFA confirmed the 4-factor model; these were highly correlated and a bifactor model showed acceptable fit. The ES for quality of care in PCU's was 0.727; ES for Poland was 0.657, supporting the sensitivity of CODETM to detect differences. CONCLUSION: Within an international context, good evidence supports the validity and reliability of CODETM for assessing the quality of care provided in the last days of life.

ILIVE Project Volunteer study. Developing international consensus for a European Core Curriculum for hospital end-of-life-care volunteer services, to train volunteers to support patients in the last weeks of life: A Delphi study.

BACKGROUND: Volunteers make a huge contribution to the health and wellbeing of the population and can improve satisfaction with care especially in the hospice setting. However, palliative and end-of-life-care volunteer services in the hospital setting are relatively uncommon. The iLIVE Volunteer Study, one of eight work-packages within the iLIVE Project, was tasked with developing a European Core Curriculum for End-of-Life-Care Volunteers in hospital. AIM: Establish an international consensus on the content of a European Core Curriculum for hospital end-of-life-care volunteer services which support patients in the last weeks of life. DESIGN: Delphi Process comprising the following three stages:1. Scoping review of literature into palliative care volunteers.2. Two rounds of Delphi Questionnaire.3. Nominal Group Meeting. SETTING/PARTICIPANTS: Sixty-six participants completed the Round 1 Delphi questionnaire; 75% (50/66) took part in Round 2. Seventeen participants attended the Nominal Group Meeting representing an international and multi-professional group including, clinicians, researchers and volunteer coordinators from the participating countries. RESULTS: The scoping review identified 88 items for the Delphi questionnaire. Items encompassed organisational issues for implementation and topics for volunteer training. Three items were combined and one item added in Round 2. Following the Nominal Group Meeting 53/87 items reached consensus. CONCLUSION: Key items for volunteer training were agreed alongside items for implementation to embed the end-of-life-care volunteer service within the hospital. Recommendations for further research included in-depth assessment of the implementation and experiences of end-of-life-care volunteer services. The developed European Core Curriculum can be adapted to fit local cultural and organisational contexts.

Hospital care for the dying patient with cancer: does an advance care planning invitation influence bereaved relatives' experiences? A two country survey.

OBJECTIVES: Advance care planning (ACP) is not systematically performed in Argentina or Norway. We used the post-bereavement survey of the ERANet-LAC International Care Of the Dying Evaluation (CODE) project (2017-2020) to examine the proportion of relatives who were offered an ACP conversation, the proportion of those not offered it who would have wanted it and whether the outcomes differed between those offered a conversation and those not. METHODS: Relatives after cancer deaths in hospitals answered the CODE questionnaire 6-8 weeks post bereavement, by post (Norway) or interview (Argentina). Two additional questions asked if the relative and patient had been invited to a conversation about wishes for the patient's remaining lifetime, and, if not invited, whether they would have wanted such a conversation. The data were analysed using mixed-effects ordinal regression models. RESULTS: 276 participants (Argentina 98 and Norway 178) responded (56% spouses, 31% children, 68% women, age 18-80+). Fifty-six per cent had been invited, and they had significantly more positive perceptions about care and support than those not invited. Sixty-eight per cent of the participants not invited would have wanted an invitation, and they had less favourable perceptions about the care, especially concerning emotional and spiritual support. CONCLUSIONS: Relatives who had been invited to a conversation about wishes for the patient's remaining lifetime had more positive perceptions about patient care and support for the relatives in the patient's final days of life. A majority of the relatives who had not been invited to an ACP conversation would have wanted it.

One chance to get it right: improving clinical handovers for better symptom control at the end of life.

Poor communication contributes to morbidity and mortality, not only in general medical care but also at the end oflife. This leads to issues relating to symptom control and quality of care. As part of an international project focused on bereaved relatives' perceptions about quality of end-of-life care, we undertook a quality improvement (QI) project in a general hospital in Córdoba city, Argentina.By using two iterative QI cycles, we launched an educational process and introduced a clinical mnemonic tool, I-PASS, during ward handovers. The introduction of the handover tool was intended to improve out-of-hours care.Our clinical outcome measure was ensuring comfort in at least 60% of dying patients, as perceived by family carers, during night shifts in an oncology ward during the project period (March-May 2019). As process-based measures, we selected the proportion of staff completing the I-PASS course (target 60%) and using I-PASS in at least 60% of handovers. Participatory action research was the chosen method.During the study period, 13/16 dying patients were included. We received 23 reports from family carers about the level of patient comfort during the previous night.Sixty-five per cent of healthcare professionals completed the I-PASS training. The percentage of completed handovers increased from 60% in the first Plan-Do-Study-Act (PDSA) cycle to 68% in the second one.The proportion of positive reports about patient comfort increased from 63% (end of the first PDSA cycle) to 87% (last iterative analysis after 3 months). Moreover, positive responses to 'Did doctors and nurses do enough for the patient to be comfortable during the night?' increased from 75% to 100% between the first and the second QI cycle.In conclusion, we achieved the successful introduction and staff training for use of the I-PASS tool. This led to improved perceptions by family carers, about comfort for dying patients.

Nordic Specialist Course in Palliative Medicine: Evaluation and Impact on the Development of Palliative Medicine in the Nordic Countries: A Survey among Participants from Seven Courses 2003-2017.

Background: The five Nordic Associations for palliative medicine (PM) have since 2003 organized a common specialist course for six weeks in two years. Aim: To describe the course: participants, evaluations, impact on participants' careers, and on the development of PM in the Nordic countries. Methods: Information on participants taken from the course archive and national registries. A web survey sent to graduates from the courses 2003-2013 (n = 150) and 2013-2017 (n = 72). Results: Mean age at course start was 46.9 years; 66% were women. Mean overall evaluation score 5.7 (range 5.4-6.0, max 7.0). Survey response rate 84% (n = 186); 80% of respondents were working in PM, the majority as leaders, >90% engaged in teaching PM. About 40% were active in PM associations, lobbying, and guideline development. Conclusion: The Nordic Specialist Course in PM has had a profound impact on the participants' postcourse careers, influencing the development of PM in the Nordic countries.

Good Quality Care for Cancer Patients Dying in Hospitals, but Information Needs Unmet: Bereaved Relatives' Survey within Seven Countries.

BACKGROUND: Recognized disparities in quality of end-of-life care exist. Our aim was to assess the quality of care for patients dying from cancer, as perceived by bereaved relatives, within hospitals in seven European and South American countries. MATERIALS AND METHODS: A postbereavement survey was conducted by post, interview, or via tablet in Argentina, Brazil, Uruguay, U.K., Germany, Norway, and Poland. Next of kin to cancer patients were asked to complete the international version of the Care Of the Dying Evaluation (i-CODE) questionnaire 6-8 weeks postbereavement. Primary outcomes were (a) how frequently the deceased patient was treated with dignity and respect, and (b) how well the family member was supported in the patient's last days of life. RESULTS: Of 1,683 potential participants, 914 i-CODE questionnaires were completed (response rate, 54%). Approximately 94% reported the doctors treated their family member with dignity and respect "always" or "most of the time"; similar responses were given about nursing staff (94%). Additionally, 89% of participants reported they were adequately supported; this was more likely if the patient died on a specialist palliative care unit (odds ratio, 6.3; 95% confidence interval, 2.3-17.8). Although 87% of participants were told their relative was likely to die, only 63% were informed about what to expect during the dying phase. CONCLUSION: This is the first study assessing quality of care for dying cancer patients from the bereaved relatives' perspective across several countries on two continents. Our findings suggest many elements of good care were practiced but improvement in communication with relatives of imminently dying patients is needed. (ClinicalTrials.gov Identifier: NCT03566732). IMPLICATIONS FOR PRACTICE: Previous studies have shown that bereaved relatives' views represent a valid way to assess care for dying patients in the last days of their life. The Care Of the Dying Evaluation questionnaire is a suitable tool for quality improvement work to help determine areas where care is perceived well and areas where care is perceived as lacking. Health care professionals need to sustain high quality communication into the last phase of the cancer trajectory. In particular, discussions about what to expect when someone is dying and the provision of hydration in the last days of life represent key areas for improvement.

Development of an international Core Outcome Set (COS) for best care for the dying person: study protocol.

BACKGROUND: In contrast to typical measures employed to assess outcomes in healthcare such as mortality or recovery rates, it is difficult to define which specific outcomes of care are the most important in caring for dying individuals. Despite a variety of tools employed to assess different dimensions of palliative care, there is no consensus on a set of core outcomes to be measured in the last days of life. In order to optimise decision making in clinical practice and comparability of interventional studies, we aim to identify and propose a set of core outcomes for the care of the dying person. METHODS: Following the COMET initiative approach, the proposed study will proceed through four stages to develop a set of core outcomes: In stage 1, a systematic review of the literature will identify outcomes measured in existing peer reviewed literature, as well as outcomes derived through qualitative studies. Grey literature, will also be included. Stage 2 will allow for the identification and determination of patient and proxy defined outcomes of care at the end of life via quantitative and qualitative methods at an international level. In stage 3, from a list of salient outcomes identified through stages 1 and 2, international experts, family members, patients, and patient advocates will be asked to score the importance of the preselected outcomes through a Delphi process. Stage 4 consists of a face-to-face consensus meeting of international experts and patient/family representatives in order to define, endorse, and propose the final Core Outcomes Set. DISCUSSION: Core Outcome Sets aim at promoting uniform assessment of care outcomes in clinical practice as well as research. If consistently employed, a robust set of core outcomes for the end of life, and specifically for the dying phase, defined by relevant stakeholders, can ultimately be translated into best care for the dying person. Patient care will be improved by allowing clinicians to choose effective and meaningful treatments, and research impact will be improved by employing internationally agreed clinically relevant endpoints and enabling accurate comparison between studies in systematic reviews and/or in meta-analyses.

Patients' illness narratives-From being healthy to living with incurable cancer: Encounters with doctors through the disease trajectory.

BACKGROUND: Narrative medicine emphasizes how stories can increase the understanding of patients' experiences and give important insights into how patients interpret and strive to make meaning in the situation they find themselves in. AIM: The aim of this study was to gain insight into the illness narratives of cancer patients, from the day they suspected that something was wrong until living with incurable cancer. METHODS AND RESULTS: Six men and seven women, aged 47 to 79 years, diagnosed with metastatic cancer and undergoing chemotherapy with life-prolonging intent in an oncology outpatient clinic, were asked to tell their illness stories as freely as possible, without guiding questions. Stories were tape recorded, transcribed, and analyzed by a thematic narrative analysis. Encounters with doctors through the disease trajectory were highlighted by all narrators. Several informants described poor communication and consequences in the form of "doctors delay" and substandard psychosocial care. Continuity in follow-up and the physician's ability or inability to break bad news and adapt information to the patient's wishes and preferences were particularly emphasized. CONCLUSION: A key finding was the importance of the doctor's role throughout the whole trajectory. A good doctor-patient relationship was characterized by continuity of care in follow-up, and trust acquired over time, based on the physician's thorough medical knowledge combined with sensitive communication and empathy.

Factors affecting quality of end-of-life hospital care - a qualitative analysis of free text comments from the i-CODE survey in Norway.

BACKGROUND: The ERANet-LAC CODE (Care Of the Dying Evaluation) international survey assessed quality of care for dying cancer patients in seven countries, by use of the i-CODE questionnaire completed by bereaved relatives. The aim of this sub study was to explore which factors improve or reduce quality of end-of-life (EOL) care from Norwegian relatives' point of view, as expressed in free text comments. METHODS: 194 relatives of cancer patients dying in seven Norwegian hospitals completed the i-CODE questionnaire 6-8 weeks after bereavement; recruitment period 14 months; response rate 58%. Responders were similar to non-responders in terms of demographic details.104 participants (58% spouse/partner) added free text comments, which were analyzed by systematic text condensation. RESULTS: Of the 104 comments, 45% contained negative descriptions, 27% positive and 23% mixed. 78% described previous experiences, whereas 22% alluded to the last 2 days of life. 64% of the comments represented medical/surgical/oncological wards and 36% palliative care units. Four main categories were developed from the free text comments: 1) Participants described how attentive care towards the practical needs of patients and relatives promoted dignity at the end of life, which could easily be lost when this awareness was missing. 2) They experienced that lack of staff, care continuity, professional competence or healthcare service coordination caused uncertainty and poor symptom alleviation. 3) Inadequate information to patient and family members generated unpredictable and distressing final illness trajectories. 4) Availability and professional support from healthcare providers created safety and enhanced coping in a difficult situation. CONCLUSIONS: Our findings suggest that hospitals caring for cancer patients at the end of life and their relatives, should systematically identify and attend to practical needs, as well as address important organizational issues. Education of staff members ought to emphasize how professional conduct and communication fundamentally affect patient care and relatives' coping.

Feasibility and acceptability of introducing advance care planning on a thoracic medicine inpatient ward: an exploratory mixed method study.

BACKGROUND AND AIMS: Advance care planning (ACP) is communication about wishes and preferences for end-of-life care. ACP is not routinely used in any Norwegian hospitals. We performed a pilot study (2014-2017) introducing ACP on a thoracic medicine ward in Norway. The aims of this study were to explore which topics patients discussed during ACP conversations and to assess how patients, relatives and clinicians experienced the acceptability and feasibility of performing ACP. METHODS: Conversations were led by a study nurse or physician using a semistructured guide, encouraging patients to talk freely. Each conversation was summarised in a report in the patient's medical record. At the end of the pilot period, clinicians discussed their experiences in focus group interviews. Reports and transcribed interviews were analysed using systematic text condensation. RESULTS: Fifty-one patients participated in ACP conversations (41-86 years; 9 COPD, 41 lung cancer, 1 lung fibrosis; 11 women); 18 were accompanied by a relative. Four themes emerged: (1) disturbing symptoms, (2) existential topics, (3) care planning and (4) important relationships. All participants appreciated the conversations. Clinicians (1 physician and 7 nurses) participated in two focus group interviews. Reports from ACP conversations revealed patient values previously unknown to clinicians; important information was passed on to primary care. Fearing they would deprive patients of hope, clinicians acted as gatekeepers for recruitment. Although they reported barriers during recruitment, many clinicians saw ACP as pertinent and called for time and skills to integrate it into their daily clinical practice. CONCLUSIONS: Patients, relatives and clinicians showed a positive attitude towards ACP. Focusing on present and future symptom control may be an acceptable way to introduce ACP. Important aspects for implementing ACP in this patient group are management support, education, training, feasible routines and allocated time to perform the conversations.

Randomized controlled trial of the effectiveness of three different oral moisturizers in palliative care patients.

Most patients in palliative care have problems with dry mouth caused by medication or as a direct result of their condition. Dry mouth may cause problems that affect the primary disease negatively and contribute to poorer quality of life in palliative patients. This randomized controlled trial compared the efficacy of three different oral moisturizers: 17% watery solution of glycerol; oxygenated glycerol triester (marketed as Aequasyal in Europe and as Aquoral in the USA); and a newly developed product, Salient. Of the three products, glycerol provided the best relief from xerostomia directly after application, but had no effect after 2 h. By contrast, the effects of Aequasyal and Salient were largely maintained over the same period. The findings for oral discomfort and pain and speech problems showed a similar pattern. Despite its poor effect after 2 h, patients preferred glycerol over Salient and Aequasyal, probably because of the unpleasant taste of Aequasyal and the consistency and mode of application of Salient. Within the limitations of this study, none of the three products tested was found to be clinically completely adequate. However, the glycerol solution was preferred by this group of patients, and its short-lived effect can be compensated for by frequent applications.

Pilot testing of the first version of the European Association for Palliative Care basic dataset: A mixed methods study.

BACKGROUND: Inadequate description of palliative care cancer patients in research studies often leads to results having limited generalizability. To standardize the description of the sample, the European Association for Palliative Care basic data set was developed, with 31 core demographic and disease-related variables. AIM: To pilot test the data set to check acceptability, comprehensibility and feasibility. DESIGN: International, multi-centre pilot study at nine study sites in five European countries, using mixed methods. SETTING/PARTICIPANTS: Adult cancer patients and staff in palliative care units, hospices and home care. RESULTS: In all, 191 patients (544 screened) and 190 health care personnel were included. Median time to fill in the patient form was 5 min and the health care personnel form was 7 min. Ethnicity was the most challenging item for patients and requires decisions at a national level about whether or how to include. Health care personnel found weight loss, principal diagnosis, additional diagnoses and stage of non-cancer diseases most difficult to respond to. Registration of diagnoses will be changed from International Statistical Classification of Diseases and Related Health Problems, 10th version code to a predefined list, while weight loss and stage of non-cancer diseases will be removed. The pilot study has led to rewording of items, improvement in response options and shortening of the data set to 29 items. CONCLUSION: Pilot testing of the first version of the European Association for Palliative Care basic data set confirmed that patients and health care personnel understand the questions in a consistent manner and can answer within an acceptable timeframe. The pilot testing has led to improvement, and the new version is now subject to further testing.

Clinically Significant Drug-Drug Interactions Involving Medications Used for Symptom Control in Patients With Advanced Malignant Disease: A Systematic Review.

CONTEXT: Most patients with advanced malignant disease need to take several drugs to control symptoms. This treatment raises risks of serious adverse effects and drug-drug interactions (DDIs). OBJECTIVES: To identify studies reporting clinically significant DDIs involving medications used for symptom control, other than opioids used for pain management, in adult patients with advanced malignant disease. METHODS: Systematic review with searches in Embase, MEDLINE, and the Cochrane Central Register of Controlled Trials, from the start of the databases (Embase from 1980) through June 21, 2018. In addition, reference lists of relevant full-text articles were hand-searched. RESULTS: Of 9699 retrieved citations, 462 were considered potentially eligible. After full-text reading, 29 were included in the final analysis, together with 13 articles from reference lists. The 42 included publications were case reports, letters to the Editor, and one retrospective study. Drugs most often involved were antiepileptics, antidepressants, corticosteroids, and nonopioid analgesics. Clinical manifestations of identified DDIs included sedation, respiratory depression, serotonin syndrome, neuroleptic malignant syndrome, delirium, seizures, ataxia, liver and kidney failure, bleeding, cardiac arrhythmias, rhabdomyolysis, and others. The most common mechanisms eliciting DDIs were alteration of CYP450-dependent metabolism and overstimulation of serotonin receptors in the central nervous system. CONCLUSION: Drugs used for symptom control in patients with advanced cancer may cause serious DDIs. Although there is limited evidence for the risk of clinically significant DDIs, physicians treating patients with cancer should try to limit polypharmacy, avoid drug combinations with a high risk of DDIs, and closely monitor patients for adverse drug reactions.