Reasons for non-participation in cancer rehabilitation: a scoping literature review.

BACKGROUND: Rehabilitation plays an important role in addressing the many challenges of living with cancer, but a large proportion of people with cancer do not participate in available cancer rehabilitation. Hence, reasons for non-participation in cancer rehabilitation need to be explored. OBJECTIVE: The present study undertakes a scoping review of research examining reasons for non-participation in cancer rehabilitation among people with cancer. DESIGN: A systematic search was conducted in PubMed, Scopus and CINAHL for articles published until July 2023. Included studies were hand searched for relevant references and citations. ELIGIBILITY CRITERIA: Method: Studies with qualitative, quantitative or mixed-method design. POPULATION: Studies targeting adults (> 18) living with cancer, not participating in rehabilitation. Program type: The review included all studies defining program as rehabilitation but excluded clinical trials. OUTCOME: Studies examining reasons for non-participation in available rehabilitation. DATA EXTRACTION: The extracted data included author(s)/year of publication, aim, population, information, rehabilitation type and main reasons for non-participation. RESULTS: A total of nine studies were included (n = 3 quantitative, n = 2 qualitative, n = 4 mixed methods). Reasons for non-participation included physical, psychosocial and practical aspects. The main reason across studies was 'no need for public support' related to receiving sufficient support from family and friends. All studies focused on individual reasons, and structural conditions were rarely present. CONCLUSION: Research within this field is sparse. Future research should explore how individual reasons for non-participation relate to structural conditions, especially among people in socially disadvantaged positions living with cancer.

District nurses experiences in providing terminal care in rural and more urban districts. A qualitative study from the Faroe Islands.

OBJECTIVE: To explore district nurses' experiences in providing terminal care to patients and their families until death in a private home setting. DESIGN, SETTING AND SUBJECTS: Qualitative study. Data derived from focus group discussions with primary nurses in The Faroe Islands. RESULTS: Four themes were identified: 'Challenges in providing terminal care', 'The importance of supporting families', 'Collaborative challenges in terminal care' and 'Differences between rural districts and urban districts'. The nurses felt that terminal care could be exhausting, but they also felt the task rewarding. Involving the family was experienced as a prerequisite for making home death possible. Good collaboration with the local GPs was crucial, and support from a palliative care team was experienced as helpful. They pointed out that changes of GP and the limited services from the palliative care team were challenging. Structural and economic conditions differed between urban and rural districts, which meant that the rural districts needed to make private arrangements regarding care during night hours, while the urban districts had care services around the clock. CONCLUSION: Our findings underline the complexity of terminal care. The nurses felt exhausted yet rewarded from being able to fulfil a patient's wish to die at home. Experience and intuition guided their practice. They emphasised that good collaboration with the GPs, the palliative care team and the families was important. Establishing an outgoing function for the palliative care team to support the nurses and the families would increase the scope for home deaths. Working conditions differed between rural and urban districts.

District nurses are key providers of care for people dying in a home care setting.Collaboration with family is essential for making home death possible.Taking care of dying patients is experienced as exhausting but also meaningful.There is a need for an outgoing palliative care team to include all patients regardless of disease.

Transformation of the concepts and practice of total pain and total care: 30 years of Danish hospices.

The concept of total pain endeavors to encompass central aspects of suffering in relation to severe disease, death and dying. Dame Cicely Saunders introduced the concept in the early 1960s in relation to care for the terminally ill and dying patients with cancer. An examination of Danish palliative care, particularly Danish hospice care, indicates that total pain continues to be a relevant concept today. To further explore the current relevance of total pain the study examines its underlying ontology, epistemology and methodology. The study also addresses how the understanding and practice of total pain theory has developed throughout its history, in addition to how the understanding of concepts and practices is constantly being negotiated, shaped and transformed in relation to changes in society and by individuals, groups and organizations. The first of 21 hospices in Denmark opened in 1992 and they represent a case in point for exploring the transformation of total pain and total care since then. The empirical data, which are based on materials relevant to the history of the hospice movement and practice in Denmark, include national policy documents, local yearbooks, mapping, research, documentation of practice, interviews and on-going dialogue with management and staff at Danish hospices over the last 25 years. The study, which takes an abductive analytical approach, draws on my own experiences and empirical data, in addition to the empirical and theoretical research of others but also gains inspiration from a theoretical institutional logic perspective. Research shows that there are three main co-existing and interrelated institutional logics in the history of Danish hospices: care, medicine and governance. Based on inspiration from sociological and philosophical palliative care research and data on the development of Danish hospices, this study demonstrates how the concepts and practices of total pain and total care have been transformed in the compromises made due to the co-existence of these competing logics.

Stories of a long life with HIV: A qualitative study of a narrative intervention.

BACKGROUND: The dominant story of HIV in Denmark portrays HIV as compatible with a nearly normal life. International research on the experiences of elderly people diagnosed with human immunodeficiency virus (HIV) in the 1980s to mid-1990s challenges this narrative. AIMS: To gain knowledge on the experiences of elderly long-term survivors of HIV in Denmark and to evaluate if a narrative intervention 'giving voice' to this specific group was experienced as improving their quality of life. METHODS: In collaboration with relevant stakeholders, we developed a narrative intervention at REHPA, the Danish Knowledge Centre for Rehabilitation and Palliative Care focusing on the experiences and stories of people having lived a long life with HIV. Nineteen women and men living with HIV were included in the study. The intervention's evaluation design was based on ethnographic fieldwork that included participant observation and focus group interviews. The qualitative data were analysed using thematic content analysis. RESULTS: The findings show that the dominant story on HIV does not adequately cover the experiences of elderly Danes who have lived a long life with HIV. The participants continue to suffer from late complications and physical, existential, emotional and social challenges. The narrative intervention helped improve how participants experienced their quality of life. CONCLUSION: Long-term elderly Danish survivors diagnosed with HIV in the 1980s to mid-1990s suffer from complex symptoms and problems related to living their lives with HIV and treatment. They found that telling and sharing their life stories with other people with HIV gave them a sense of coherence, meaning and direction in life. RELEVANCE: The study documents the experiences of a group of long-term survivors of HIV in Denmark, making it relevant for organisations supporting people with HIV and for health care professionals working with this group. Furthermore, the study adds to the knowledge base on the use of narrative methods in rehabilitation.

Organizational narratives in rehabilitation-focused dementia care - Negotiating identities, interventions and personhood.

BACKGROUND: Rehabilitation is increasingly being introduced in dementia care but studies highlight extensive heterogeneity in practices, conceptual confusion and divergent perceptions of its relevance across care organizations and national contexts. As this have implications for development of dementia care as well as for people with dementia's access to care it is important to study the organizational narratives and practices in rehabilitation-oriented dementia care organizations. METHODS: The study build on qualitative interviews (individual and group interviews) with health professionals (N = 26) engaged with dementia care and rehabilitation in two Danish municipalities. The interviews were conducted in 2018-2019. The empirical data was analyzed using abductive analysis and theory-based narrative analysis, using Loseke's conceptualizations of and approach to analyzing formula stories. FINDINGS: Four dominant organizational narratives were constructed from the data. Each narrative produced a specific organizational narrative of client identity: the active participant in individualized rehabilitation, the inactive individual benefitting from enhanced social environments, the disengaging self and the vulnerable self. CONCLUSION: Introducing rehabilitation in dementia care may amplify the organizational polyphonic and provide a plurality of organizational identities each expressing different perceptions of personhood and agency for people with dementia. The organizational narratives were negotiated within a specific structural context where national regulation and dominant discourses on economic challenges and ageing gave precedence to some narratives more than others. In Danish elder care, the first narrative is the most influential but risks excluding people with dementia. Instead, rehabilitation in dementia care is positioned within a social and relational perspective, which may silence important discussion of agency and resistance.

Caregivers' experiences of end-of-life caregiving to severely ill relatives with cancer dying at home: A qualitative study in the Faroe Islands.

BACKGROUND AND AIM: It is common among people with advanced cancer to wish to die at home, but only a few succeed in doing so. The willingness of family members to care for a person, who wants to die at home, is crucial This qualitative study aimed to provide insight into conditions that make dying at home possible in a small-scale society and to describe family caregivers' experiences of providing end-of-life care in a private home setting. METHODS: Thirteen caregivers were interviewed, their ages varying from 39 to 84 years. A phenomenological approach, inspired by Giorgi, was applied. RESULTS: Two essential structures captured the experience of caring at home until death: 'Managing end-of-life care' and 'meaningfulness in a time of impending death'. It was mainly the family, and especially family members with a healthcare background, together with the district nurses, who supported the caregivers in managing the care of a dying relative at home. Being able to fulfil their relative's wish to die at home and to come closer together as a family made the caregivers feel their efforts meaningful. CONCLUSION: Our findings point to the importance of having access to home care day and night for the caregivers to feel secure during the night-time. As of now, this is only an option in larger towns in the Faroe Islands, which might also be the case in outskirts areas in other countries. Our findings also showed an unmet need for support to ease the mental load on caregivers. Establishing an outgoing interdisciplinary palliative team would help to increase the number of people who want to die at home and succeed in doing so by giving the caregivers emotional and advisory support.

Development of a complex intervention (safe and secure) to support non-western migrant patients with palliative care needs and their families.

PURPOSE: International evidence supports the benefits of early use of palliative care, although the best use of services is often under-utilised among Danish migrants. The study aims to develop a theoretically informed, evidence-based intervention to increase support in palliative care service provision among non-western migrant patients with a life-threatening disease and their families in Denmark. METHODS: The overall approach was guided by the United Kingdom Medical Research Council framework for developing and evaluating complex interventions by involving stakeholders for example patients, family caregivers, and healthcare professionals. The intervention was developed iteratively by incorporating theory and evidence. Evidence was synthesized from a systematic review, semi-structured interviews, and group discussions with patients (n = 8), family caregivers (n = 11), healthcare professionals (n = 10); and three workshops with migrants (n = 5), social and healthcare professionals (n = 6). The study took place in six different settings in two regions across Denmark. RESULTS: The safe and secure complex intervention is a healthcare professional (e.g. nurse, physiotherapist, or occupational therapist) led patient-centred palliative care intervention at the basic level. The final intervention consists of three components 1. Education and training sessions, 2. Consultations with the healthcare professional, and 3. Coordination of care. CONCLUSION: This study describes the development of a supportive palliative care intervention for non-western migrant patients with palliative care needs and their families, followed by a transparent and systematic reporting process. A palliative care intervention combining multiple components targeting different stakeholders, is expected that safe and secure is more suitable and well customized in increasing access and use of palliative care services for non-western migrant families in Denmark.

A qualitative study of the experiences of relatives to brought in dead persons in an emergency department.

AIMS: The aim was to explore the experiences of relatives seeing and saying goodbye to brought in dead persons in a Danish emergency department. DESIGN: This was a qualitative study based on interpretive description methodology. METHODS: Data were collected through semi-structured individual interviews with relatives (n = 11) of brought in dead persons and 30 h of participatory observations of these relatives visiting the emergency department to see and say goodbye to the deceased. Data were collected between February 2019 and December 2020. RESULTS: Our analyses revealed internal and external chaos as an overarching theme, covering 4 themes and 10 subthemes. The four themes were traumatic events, restricted access, briefly being together again, and final goodbyes and departures. CONCLUSION: Emergency departments were highly acute and busy settings that prioritized survival more than the care of deceased people and their relatives. The relatives were, in every way, affected by internal and external chaos; the external chaos in the emergency department reinforced the feeling of internal chaos. It is necessary for managers and nurses in emergency departments to organize and practice care for relatives, whilst bringing in deceased individuals in a less chaotic and more caring manner. IMPACT: This study contributes to the knowledge of relatives' experiences regarding brought in dead persons, underpinning the need to care for this subpopulation in emergency departments. Care for relatives of brought in dead individuals has the potential to relieve suffering and prevent diseases, which are core elements of nursing.

Palliative Care Utilisation Among Non-Western Migrants in Denmark: A Qualitative Study Of the Experiences of Patients, Family Caregivers and Healthcare Professionals.

This study explores care experiences while utilising palliative care services of non-western migrant families from the perspectives of patients, family caregivers, and healthcare professionals in Denmark. Twenty-three semi-structured individual and group interviews were conducted among eight patients with a life-threatening disease, 11 family caregivers, and ten healthcare professionals. Thematic analysis revealed three themes: 1) Communication between families and healthcare professionals; 2) Building and lack of trusting relations, and feeling safe, and 3) Access to information and navigating in the healthcare system. Moreover, ''language and culture'' emerged as transaction themes that are not mutually exclusive, however, interconnect across the mentioned three themes. Non-western migrant families can be supported by healthcare professionals' cultural competency training, negotiating on providing services concerning information, patient preferences, family involvement, and palliative care setting. This study findings urge inter-sectoral collaboration to ensure needs-oriented and linguistically and culturally appropriate palliative care services for non-western migrant families in Denmark.

What do women at high risk of breast cancer request of a patient education day? Focus interviews with women before and after deciding about prophylactic interventions.

OBJECTIVE: At a Danish Hospital, we wished to establish a co-designed patient education day about prophylactic interventions for women at high risk of developing breast cancer. However, knowledge is lacking on the women's acceptability and requests for content. The objective of this study is to gain knowledge about the acceptability and requests of the content of a patient education day among women at high risk of breast cancer considering prophylactic mastectomy. METHODS: A user panel consisting of patients and health care professionals developed an interview guide for two focus interviews with two groups of women at high risk of breast cancer; one group had received a prophylactic mastectomy and one group considered it. Thematic analysis was used to explore the participants' acceptability and requests for content. RESULTS: Meaningful content was knowledge about prophylactic interventions, how to share knowledge with partners and children, and talking to equals in a safe forum. Not all participants wished to discuss own surgery in a group setting. CONCLUSION: An education day is an acceptable and supportive format for gaining knowledge about surgery, but since some topics may be vulnerable to discuss in a group setting to some women, we suggest the education day as a valuable supplement to the individual consultations.

A resource-oriented intervention addressing balance in everyday activities and quality of life in people with advanced cancer: protocol for a feasibility study.

BACKGROUND: People with advanced cancer need to balance their resources and energy in order to experience enjoyment and quality of life in the time they have left. A resource-oriented intervention is developed targeting these aspects. The present protocol presents a feasibility study of this resource-oriented intervention in people with advanced cancer. METHODS: A feasibility study with a repeated-measurement design without a control group will be conducted at the research clinic of REHPA, the Danish Knowledge Center for Rehabilitation and Palliative Care. Data will be gathered at baseline, during and after a 5-day residential stay, after 6 weeks, during a 2-day follow-up stay and after 12 weeks. In total, 20-25 home-living adults (≥ 18 years) with advanced cancer reporting needs in everyday life will be recruited. The intervention consists of workshops and engagement in physical and creative everyday activities provided by a multidisciplinary team. Outcome measures are quality of life, physical function and fatigue, which will be assessed using the European Organisation for Research and Treatment of Cancer Quality-of-Life Questionnaire Core-30. Balance in everyday activities will be assessed using the Occupational Balance Questionnaire. Feasibility data will also be collected regarding (1) fidelity, (2) adherence, (3) dose and (4) reach and mechanisms of impact. For exploration of mechanism of impact, participant observations and focus group interviews will be used. DISCUSSION: This study presents a new approach in rehabilitation and palliative care aimed at supporting people with advanced cancer; instead of identification of problems, the present resource-oriented palliative rehabilitation intervention will target people's resources, enhancing balance in everyday activities and underpinning enjoyment and quality of life. The results from the feasibility study can inform ways in which to support the everyday life of people with advanced cancer and thus have potential to improve their quality of life. The long-term perspectives are to evaluate the intervention in terms of effect, process and cost-effectiveness. This will provide evidence to adjust the content of rehabilitation and palliative care for this group of people. TRIAL REGISTRATION: NCT04772690 Name of the registry: Balance, Activity and Quality of Life (BAL) Date of registry: February 26, 2021.

Palliative Care Utilization Among Non-Western Migrants in Europe: A Systematic Review.

The paper aims to identify and describe the European evidence on opportunities and barriers to access and utilization of palliative care among non- western migrants. A systematic review in accordance with PRISMA guidelines was conducted in June 2020, searching Medline, CINAHL, PsychINFO and EMBASE databases. PROSPERO# CRD42020193651. Studies included empirical research published between 2011 and 2020. Search words were, for example, ethnic groups and palliative care. Thematic analysis was used to analyze data. Twenty nine qualitative and six quantitative studies were included. Four main themes were identified: communication and language; knowledge and awareness; patient preferences, cultural and religious issues; and lack of resources at different levels of palliative care service provision. Migrants' access to palliative care is impeded at system, community and individual levels, yet, recommendations are mostly at the individual level. Closer attention is required to these different levels when designing future palliative interventions for migrants.

First steps to integrate general palliative care into a cardiac hospital setting - using dialogue-based workshops.

BACKGROUND: Heart failure is a chronic, life-threatening illness with multiple acute events. Palliative care alongside standard treatment is recommended for these patients. There is a lack of knowledge and research literature on how to integrate palliative care interventions for heart failure patients in a general hospital setting. AIM: The aim of this study was to produce new insight for developing and integrating general palliative care into heart failure treatment. METHODS: Guided by action research, we conducted an interdisciplinary workshop inspired by Tsoukas dialogue theory, where tension between perspectives is used as a facilitator of dialogue and the generation of new insights. Perspectives were incorporated through selected patient narratives and professionals' experiences. Data from the workshop were analysed using a thematic analysis. The findings are interpreted with Kleinman's theory on illness and disease and discussed using Tsoukas theory and additional research. RESULTS: General palliative care must be initiated from the patient's perspective and wishes. Doing so requires understanding and uniting the different perspectives and objectives of heart failure treatment and palliative care. One way of doing this is through a narrative approach with interdisciplinary teams. However, this requires organisational efforts and adaptation to the specific cardiac setting. CONCLUSION: Integrating palliative care principles into cardiology is a complex issue. Developing palliative care for heart failure patients requires more than simply designing a set of guidelines. Rather, a wider outlook involving perspectives, competences and organisation is necessary. Acknowledging such considerations, we designed an intervention centred on three elements: standard heart failure treatment, integrated sessions applying a narrative approach and monthly interdisciplinary conferences. RELEVANCE: This article adds to the current research literature on changing palliative care practice for heart failure patients and the value of integrating different perspectives.

Use of narrative methods in rehabilitation and palliative care in Scandinavian countries: A scoping review.

BACKGROUND: Although narratives-including an ill person's life story, life situation and future perspectives-seem to lie at the core of rehabilitation and palliative care in Scandinavian countries, we lack a scope of how, when and where narrative methods are used. Such a scope could provide knowledge and inspiration on a practical as well as a policy level. The objective of this study is to explore the literature on the use of systematic, narrative methods in rehabilitative and palliative care for people with life-threatening illness in Scandinavian countries. METHOD: We conducted a scoping review in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) where applicable. We performed a systematic search in CINAHL, Medline, PsychInfo, SOCIndex and SveMed+using the search terms 'life threatening illness', 'narratives', 'rehabilitation', 'palliative care' and 'Scandinavia', followed by a search for grey literature. We found 42 records to be eligible for this scope and extracted the data via piloted extraction tables. RESULTS: We identified 17 narrative methods and present findings concerning four themes: (1) a record of the narrative methods used; (2) an objective and theoretical framework for the narrative methods; (3) the content and form of the narrative methods; and (4) the significance of the narrative methods used. CONCLUSION: Narrative methods are used in systematic ways in rehabilitation and palliative care in Scandinavian countries and cover a wide variety of objectives, theoretical frames, forms and outcomes. Further development may benefit from more elaboration on definitions and the relationships between objectives, theoretical frameworks and outcomes.

Patient Characteristics of Persons Dead on Arrival Received in a Danish Emergency Department: A Retrospective Review of Health Records.

INTRODUCTION: In addition to treating living patients, emergency nurses are also responsible for receiving and caring for persons who are dead on arrival and their relatives. There is limited knowledge about the dead on arrival patient and family population as well as care practice for the dead and their relatives. The first step in improving care for dead on arrival persons is to know the size and characteristics of the population. Therefore, the aim of this study was to describe the size and characteristics of the dead on arrival population in a Danish emergency department. METHODS: A retrospective review of health records was undertaken for all consecutive dead on arrival persons received in 1 Danish emergency department between January 2018 and December 2019. RESULTS: A total of 719 dead on arrival persons were included, 350 in 2018 and 369 in 2019. Males accounted for 64%. The mean age was 71 years with a range from 18 to 102 years. The place of death was 80% at home, and more than half (54%) were found either dead or dying by a spouse, cohabitant, or son/daughter. In most cases, the cause of death was described as unknown (92%), whereas suicide and accidents accounted for 8%. DISCUSSION: The population of dead on arrival persons in a Danish emergency department were mainly men, found dying or dead by relatives and brought in from home. Additional research and development are warranted regarding care practices for dead on arrival and their families in the emergency department.

Rehabilitation and palliative care: histories, dialectics and challenges.

Rehabilitation and palliative care are health care fields with separate histories but some recent convergences. Both have been identified as components within universal health coverage and each is the subject of a supportive World Health Assembly Resolution. We draw on the historiography of the two specialties, a recent systematic review of their engagement with each other as described in 62 studies, and critical policy perspectives to examine how rehabilitation and palliative care have been framed as potential partners in care. We examine the changing patient groups served by each field and the organizational forms that combined rehabilitation and palliative care (CRPC) may take. We explore the implications of such collaboration for the underlying goals and values of the two specialties, where each is the subject of changing definitions with differing responsibilities for regulating access to services as well as assuring and documenting quality. We conclude that to be effective CRPC must adapt to the highly segmented and specialized systems in which it is required to operate, recognizing that rehabilitation and palliative care are themselves co-constructors of such segmentation and specialization, but also potential agents for change.

Hospice Philosophy in Practice-Toward an Authentic Death.

This article examines how hospice philosophy works in contemporary Danish hospice practice. The still sparse literature on Danish hospices indicates that hospice philosophy is influencing professional practice. In international palliative care literature, hospice philosophy is challenged for being overly normative in its ideal of the good death or on the other hand as threatened by the medical model. Drawing on the idea of hospice philosophy as providing meaning for everyday practice, this article explores how it is incorporated within the institutional order of contemporary Danish hospices. An ethnographic study was informed by participant observation and 49 interviews with professionals, patients, and families at three hospices in Denmark. The findings contribute to further understanding of the complexity of maintaining hospice philosophy in contemporary practice. Hospice practice works in an interpretive way with hospice philosophy to offer a "lived" philosophy and a means to an authentic death.

Talking about death and dying in a hospital setting - a qualitative study of the wishes for end-of-life conversations from the perspective of patients and spouses.

BACKGROUND: End-of-life (EOL) conversations are highly important for patients living with life-threatening diseases and for their relatives. Talking about the EOL is associated with reduced costs and better quality of care in the final weeks of life. However, there is therefore a need for further clarification of the actual wishes of patients and their relatives concerning EOL conversations in an acute hospital setting. AIM: The purpose of this study was to explore the wishes of patients and their relatives with regard to talking about the EOL in an acute hospital setting when living with a life-threatening disease. METHODS: This study is a qualitative study using semi-structured in-depth interviews. A total of 17 respondents (11 patients and six spouses) participated. The patients were identified by the medical staff in a medical and surgical ward using SPICT™. The interview questions were focused on the respondents' thoughts on and wishes about their future lives, as well as on their wishes regarding talking about the EOL in a hospital setting. RESULTS: This study revealed that the wish to talk about the EOL differed widely between respondents. Impairment to the patients' everyday lives received the main focus, whereas talking about EOL was secondary. Conversations on EOL were an individual matter and ranged from not wanting to think about the EOL, to being ready to plan the funeral and expecting the healthcare professionals to be very open about the EOL. The conversations thus varied between superficial communication and crossing boundaries. CONCLUSION: The wish to talk about the EOL in an acute hospital setting is an individual matter and great diversity exists. This individualistic stance requires the development of conversational tools that can assist both the patients and the relatives who wish to have an EOL conversation and those who do not. At the same time, staff should be trained in initiating and facilitating EOL discussions.

What are the prevalence and predictors of psychosocial healthcare among patients with heart disease? A nationwide population-based cohort study.

OBJECTIVES: Psychosocial healthcare is recommended, but little is known about how patients perceive the level of care and whether subgroups of patients experience less psychosocial healthcare than others. We examined the prevalence of patient-reported psychosocial healthcare and factors predicting patient-reported lack of psychosocial healthcare among patients with heart disease. DESIGN: A cohort study. SETTING: Denmark, nationwide. PARTICIPANTS: A registry-based random sample of 5000 patients with incident heart disease in 2013. MEASURES: Patient-reported psychosocial healthcare was obtained from a survey and potential predictors before disease onset from registries. We used multivariable logistic regression analysis to determine predictors of patient-reported lack of care. RESULTS: We received responses from 56%; 40% reported lacking information on psychosocial aspects, 51% lacking psychosocial rehabilitation and support and 32% reported lacking both types of psychosocial healthcare. The type of heart disease was the strongest predictor of patient-reported lack of psychosocial healthcare, especially among patients with atrial fibrillation (OR: 3.11-3.98). Older age (OR: 1.48-2.05), female gender (OR: 1.27-1.53) and no contact with general practitioner (OR: 1.47-1.84) also predicted patient-reported lack of psychosocial healthcare. Patients outside the labour force (OR: 1.29) and living in the capital region (OR: 1.50) more frequently reported lacking psychosocial rehabilitation and support, and patients with recent (OR: 1.63) or past (OR: 1.33) anxiety or depression and severe comorbidities (OR: 1.34) more frequently reported lacking both types of psychosocial healthcare. CONCLUSIONS: Many patients with heart disease reported lacking psychosocial healthcare. Importantly, patients who most need psychosocial healthcare are not those who report receiving it. Our results call for action to translate guidelines into clinical practice.

Cost-effectiveness analysis of systematic fast-track transition from oncological treatment to specialised palliative care at home for patients and their caregivers: the DOMUS trial.

BACKGROUND: While hospitals remain the most common place of death in many western countries, specialised palliative care (SPC) at home is an alternative to improve the quality of life for patients with incurable cancer. We evaluated the cost-effectiveness of a systematic fast-track transition process from oncological treatment to SPC enriched with a psychological intervention at home for patients with incurable cancer and their caregivers. METHODS: A full economic evaluation with a time horizon of six months was performed from a societal perspective within a randomised controlled trial, the DOMUS trial ( Clinicaltrials.gov : NCT01885637). The primary outcome of the health economic analysis was a incremental cost-effectiveness ratio (ICER), which is obtained by comparing costs required per gain in Quality-Adjusted Life Years (QALY). The costs included primary and secondary healthcare costs, cost of intervention and informal care from caregivers. Public transfers were analysed in seperate analysis. QALYs were measured using EORTC QLQ-C30 for patients and SF-36 for caregivers. Bootstrap simulations were performed to obtain the ICER estimate. RESULTS: In total, 321 patients (162 in intervention group, 159 in control group) and 235 caregivers (126 in intervention group, 109 in control group) completed the study. The intervention resulted in significantly higher QALYs for patients when compared to usual care (p-value = 0.026), while being more expensive as well. In the 6 months observation period, the average incremental cost of intervention compared to usual care was €2015 per patient (p value < 0.000). The mean incremental gain was 0.01678 QALY (p-value = 0.026). Thereby, the ICER was €118,292/QALY when adjusting for baseline costs and quality of life. For the caregivers, we found no significant differences in QALYs between the intervention and control group (p-value = 0.630). At a willingness to pay of €80,000 per QALY, the probability that the intervention is cost-effective lies at 15% in the base case scenario. CONCLUSION: This model of fast-track SPC enriched with a psychological intervention yields better QALYs than usual care with a large increase in costs. TRIAL REGISTRATION: The trial was prospectively registered 25.6.2013. Clinicaltrials.gov Identifier: NCT01885637 .