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.

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.

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.

A pan-European survey of research in end-of-life cancer care.

BACKGROUND: To date, there is no coordinated strategy for end-of-life (EOL) cancer care research in Europe. The PRISMA (Reflecting the Positive Diversities of European Priorities for Research and Measurement in End-of-life Care) project is aiming to develop a programme integrating research and measurement in EOL care. This survey aimed to map and describe present EOL cancer care research in Europe and to identify priorities and barriers. MATERIAL AND METHODS: A questionnaire of 62 questions was developed and 201 researchers in 41 European countries were invited to complete it online in May 2009. An open invitation to participate was posted on the internet. RESULTS: Invited contacts in 36 countries sent 127 replies; eight additional responses came through websites. A total of 127 responses were eligible for analysis. Respondents were 69 male and 58 female, mean age 49 (28-74) years; 85% of the scientific team leaders were physicians. Seventy-one of 127 research groups were located in a teaching hospital or cancer centre. Forty-five percent of the groups had only one to five members and 28% six to ten members. Sixty-three of 92 groups reported specific funding for EOL care research. Seventy-five percent of the groups had published papers in journals with impact factor ≤ 5 in the last 3 years; 8% had published in journals with impact factor >10. Forty-four out of 90 groups reported at least one completed Ph.D. in the last 3 years. The most frequently reported active research areas were pain, assessment and measurement tools, and last days of life and quality of death. Very similar areas--last days of life and quality of death, pain, fatigue and cachexia, and assessment and measurement tools--were ranked as the most important research priorities. The most important research barriers were lack of funding, lack of time, and insufficient knowledge/expertise. CONCLUSIONS: Most research groups in EOL care are small. The few large groups (14%) had almost half of the reported publications, and more than half of the current Ph.D. students. There is a lack of a common strategy and coordination in EOL cancer care research and a great need for international collaboration.

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.

Prevalence of distressing symptoms in hospitalised patients on medical wards: A cross-sectional study.

BACKGROUND: Many patients with advanced, serious, non-malignant disease belong to the population generally seen on medical wards. However, little research has been carried out on palliative care needs in this group. The aims of this study were to estimate the prevalence of distressing symptoms in patients hospitalised in a Department of Internal Medicine, estimate how many of these patients might be regarded as palliative, and describe their main symptoms. METHODS: Cross-sectional (point prevalence) study. All patients hospitalised in the Departments of Internal Medicine, Pulmonary Medicine, and Cardiology were asked to do a symptom assessment by use of the Edmonton Symptom Assessment System (ESAS). Patients were defined as "palliative" if they had an advanced, serious, chronic disease with limited life expectancy and symptom relief as the main goal of treatment. RESULTS: 222 patients were registered in all. ESAS was completed for 160 patients. 79 (35.6%) were defined as palliative and 43 of them completed ESAS. The patients in the palliative group were older than the rest, and reported more dyspnea (70%) and a greater lack of wellbeing (70%). Other symptoms reported by this group were dry mouth (58%), fatigue (56%), depression (41%), anxiety (37%), pain at rest (30%), and pain on movement (42%). CONCLUSION: More than one third of the patients in a Department of Internal Medicine were defined as palliative, and the majority of the patients in this palliative group reported severe symptoms. There is a need for skills in symptom control on medical wards.

How are palliative care cancer populations characterized in randomized controlled trials? A literature review.

CONTEXT: The difficulties in defining a palliative care patient accentuate the need to provide stringent descriptions of the patient population in palliative care research. OBJECTIVES: To conduct a systematic literature review with the aim of identifying which key variables have been used to describe adult palliative care cancer populations in randomized controlled trials (RCTs). METHODS: The data sources used were MEDLINE (1950 to January 25, 2010) and Embase (1980 to January 25, 2010), limited to RCTs in adult cancer patients with incurable disease. Forty-three variables were systematically extracted from the eligible articles. RESULTS: The review includes 336 articles reporting RCTs in palliative care cancer patients. Age (98%), gender (90%), cancer diagnosis (89%), performance status (45%), and survival (45%) were the most frequently reported variables. A large number of other variables were much less frequently reported. CONCLUSION: A substantial variation exists in how palliative care cancer populations are described in RCTs. Few variables are consistently registered and reported. There is a clear need to standardize the reporting. The results from this work will serve as the basis for an international Delphi process with the aim of reaching consensus on a minimum set of descriptors to characterize a palliative care cancer population.

How are patient populations characterized in studies investigating depression in advanced cancer? Results from a systematic literature review.

CONTEXT: Prevalence rates of depression in patients with advanced cancer vary considerably. This may be because of heterogeneous samples and use of different assessment methods. Adequate sample descriptions and consistent use of measures are needed to be able to generalize research findings and apply them to clinical practice. OBJECTIVES: Our objective was twofold: First, to investigate which clinically important variables were used to describe the samples in studies of depression in patients with advanced cancer; and second, to examine the methods used for assessing and classifying depression in these studies. METHODS: PubMed, PsycINFO, Embase, and CINAHL were searched combining search term groups representing "depression," "palliative care," and "advanced cancer" covering 2007-2011. Titles and abstracts were screened, and relevant full-text articles were evaluated independently by two authors. Information on 32 predefined variables on cancer disease, treatment, sociodemographics, depression-related factors, and assessment methods was extracted from the articles. RESULTS: After removing duplicates, 916 citations were screened of which 59 articles were retained. Age, gender, and stage of the cancer disease were the most frequently reported variables. Depression-related variables were rarely reported, for example, antidepressant use (17%) and previous depressive episodes (12%). Only 25% of the studies assessed and classified depression according to a validated diagnostic system. CONCLUSION: Current practice for describing sample characteristics and assessing depression varies greatly between studies. A more standardized practice is recommended to enhance the generalizability and utility of findings. Stakeholders are encouraged to work toward a common standard for sample descriptions.

Clinical priorities, barriers and solutions in end-of-life cancer care research across Europe. Report from a workshop.

AIM: The PRISMA project is aiming to co-ordinate research priorities, measurement and practice in end-of-life (EOL) care in Europe. As part of PRISMA we undertook a questionnaire survey and a subsequent workshop to (1) identify clinical priorities for EOL care research in Europe and propose a future research agenda and (2) identify barriers to EOL care research, and possibilities and solutions to improve the research. METHODS: Thirty participants selected among the principally medical survey responders from 25 European countries attended. Twenty-six answered a preparatory pre-workshop questionnaire based on the survey results. Group work was a main part of the workshop. RESULTS: Consensus was reached on the following priorities for EOL cancer care research in Europe: symptomatology, issues related to care of the dying, and policy and organisation of services. Methodology was regarded important in all areas, including assessment/measurement and classification. Symptom research should particularly emphasise pain, fatigue, cachexia, delirium and breathlessness. Research should move from descriptive to interventional studies. The lack of consensus on definitions and outcomes was identified as a substantial research barrier. Other barriers were related to capacity and funding, environment and culture and knowledge transfer and dissemination. These areas are interrelated and should not be addressed in isolation. CONCLUSION: Consensus was obtained on priority areas and research nature for EOL care research in the next years, and a model for addressing barriers was developed.

Computer-based assessment of symptoms and mobility in palliative care: feasibility and challenges.

The aims of the study were to explore the ability of cancer patients who are primarily receiving palliative care to use a touchscreen computer for assessment of symptoms and mobility and to investigate which factors predicted the need for assistance during the assessment. Before the main data collection, a pilot study was conducted to explore the preferences of these patients toward using such a computerized assessment tool. Patients were recruited from nine different inpatient and outpatient palliative care and general cancer clinics in Norway. The patients responded to 60 items on symptoms and mobility directly on the computer. In the pilot study (n=20), 11 patients (55.0%) preferred computerized assessment over paper and pencil, whereas five (25.0%) had no preference. In the main data collection, 370 patients (52.7% men with mean age 62 years and mean Karnofsky Performance Status score of 70) completed the assessment. Eighty-six patients (23.2%) required assistance. Patients requiring assistance were significantly older, had worse performance status, and poorer cognitive function than those not requiring assistance. Predictors for requiring assistance were age (P<0.001) and performance status (P<0.001). Because higher age and worse performance status resulted in more need of assistance, assessment tools should be short and user-friendly to ensure good compliance in frail patients.