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1.
Cancer Nurs ; 2023 Jul 04.
Article in English | MEDLINE | ID: mdl-37406216

ABSTRACT

BACKGROUND: Nurses' competences in providing spiritual care can increase quality of care for and quality of life of patients with cancer and job satisfaction but are often suboptimal. Training to improve this mostly takes place off-site, although implementation in daily care practice is key. OBJECTIVES: The aims of this study were to implement a meaning-centered coaching on the job intervention and to measure its effects on oncology nurses' spiritual care competences and job satisfaction, and factors influencing this. METHODS: A participatory action research approach was adopted. Mixed methods were used to assess intervention effects in which nurses of an oncology ward in a Dutch academic hospital participated. Spiritual care competences and job satisfaction were quantitatively measured and complemented with content analysis of qualitative data. RESULTS: Thirty nurses participated. A significant increase in spiritual care competences was found, particularly regarding communication, personal support, and professionalization. More self-reported awareness of personal experiences in caring for patients, and an increase in mutual communication and involvement around meaning-centered care provision as a team were found. Mediating factors were related to nurses' attitudes, support structures, and professional relations. No significant impact was found on job satisfaction. CONCLUSION: Meaning-centered coaching on the job increased oncology nurses' spiritual care competences. Nurses developed a more exploratory attitude in their communication with patients-instead of acting based on their own assumptions about what is of meaning. IMPLICATIONS FOR PRACTICE: Attention to and improving spiritual care competences should be integrated into existing work structures, and terminology used should match existing understandings and sentiments.

2.
Article in English | MEDLINE | ID: mdl-36767521

ABSTRACT

BACKGROUND: During the course of their disease, patients are, apart from suffering physical discomfort, also confronted with psychological, social, and spiritual challenges. However, healthcare professionals often lack the knowledge and skills to address the spiritual dimension and are in need of support for taking this responsibility. Spiritual caregivers are experts in spiritual care, but their contribution to the integration of this care by other healthcare professionals is largely unknown. OBJECTIVE: The aim of this study was to investigate how Dutch spiritual caregivers view their role in increasing the integration of spiritual care in daily healthcare practice as provided by other healthcare professionals in the Netherlands, and how they address this role. METHODS: An online survey was conducted from May until June 2021 among spiritual caregivers working in Dutch healthcare. Data were analysed using descriptive statistics. RESULTS: The majority of the 174 respondents answered that they already fulfil a role in the integration of spiritual care by, for example, providing education, coaching on the job, or participating in multidisciplinary consultation. However, the majority of respondents experienced barriers to their contribution, such as confusion of terminology and use of language while collaborating with other healthcare professionals and reluctance to share information. CONCLUSIONS: While spiritual caregivers realise having the potential to make important contributions to the further process of integration of spiritual care into the daily practice of other healthcare professionals, some practices and perceptions, especially from within their own discipline, may hamper this.


Subject(s)
Caregivers , Spiritual Therapies , Humans , Caregivers/psychology , Spirituality , Delivery of Health Care , Health Personnel
3.
Eur J Ageing ; 19(4): 1561-1570, 2022 12.
Article in English | MEDLINE | ID: mdl-36506660

ABSTRACT

The Family Perceptions of Physician-Family Caregiver Communication scale (FPPFC) was developed to assess quality of physician-family end-of-life communication in nursing homes. However, its validity has been tested only in the USA and the Netherlands. The aim of this paper is to evaluate the FPPFC construct validity and its reliability, as well as the psychometric characteristics of the items comprising the scale. Data were collected in cross-sectional study in Belgium, Finland, Italy, the Netherlands and Poland. The factorial structure was tested in confirmatory factor analysis. Item parameters were obtained using an item response theory model. Participants were 737 relatives of nursing home residents who died up to 3 months prior to the study. In general, the FPPFC scale proved to be a unidimensional and reliable measure of the perceived quality of physician-family communication in nursing home settings in all five countries. Nevertheless, we found unsatisfactory fit to the data with a confirmatory model. An item that referred to advance care planning performed less well in Poland and Italy than in the Northern European countries. In the item analysis, we found that with no loss of reliability and with increased coherency of the item content across countries, the full 7-item version can be shortened to a 4-item version, which may be more appropriate for international studies. Therefore, we recommend use of the brief 4-item FPPFC version by nursing home managers and professionals as an evaluation tool, and by researchers for their studies as these four items confer the same meaning across countries. Supplementary Information: The online version contains supplementary material available at 10.1007/s10433-022-00742-x.

4.
Palliat Med ; 36(10): 1493-1503, 2022 12.
Article in English | MEDLINE | ID: mdl-36305616

ABSTRACT

BACKGROUND: Patients receiving palliative care value attention given to their spiritual needs. However, these needs often remain unexplored as healthcare professionals lack the skills to identify and explore them and to integrate this information into care plans. AIM: To evaluate the effects of an interactive communication training intervention for palliative care teams in order to identify and explore the spiritual dimension and integrate it in patients' care plans. DESIGN: A mixed methods pre-post study, including self-assessment questionnaires, evaluation of videos with simulated consultations (applied competence) and medical record review (implementation). SETTING/PARTICIPANTS: Three palliative care teams including nurses (N = 21), physicians (N = 14) and spiritual caregivers (N = 3). RESULTS: The questionnaires showed an improvement on 'Patient and family-centred communication' of the End-of-life professional caregiver survey (+0.37, p < 0.01; the 8-item S-EOLC (+0.54, p < 0.01) and regarding the Spiritual Care Competence Scale, on the three subscales used (+0.27, p < 0.01, +0.29, p < 0.01 and +0.32, p < 0.01). Video evaluations showed increased attention being paid to patient's aims and needs. The medical record review showed an increase in anticipation on the non-somatic dimension (OR: 2.2, 95% CI: 1.2-4.3, p < 0.05) and, using the Mount Vernon Cancer Network assessment tool, addressing spiritual issues (OR: 10.9, 95% CI: 3.7-39.5, p < 0.001). CONCLUSIONS: Our training intervention resulted in increased palliative care professionals' competence in identifying and exploring patients' spiritual issues, and their integration in multidimensional proactive palliative care plans. The intervention directly addresses patients' spiritual concerns and adds value to their palliative care plans.


Subject(s)
Palliative Care , Spirituality , Humans , Palliative Care/methods , Patient Care Team , Caregivers , Communication
5.
BMC Prim Care ; 23(1): 182, 2022 07 26.
Article in English | MEDLINE | ID: mdl-35883025

ABSTRACT

BACKGROUND: Palliative patients have to cope with their disease and impending death. Knowing what this means for a patient is crucial for person-centred care. Although guidelines state it is a GP core task to explore existential issues of palliative patients, this is not standard practice. AIM: Exploring Dutch GPs' perceived role regarding addressing the existential dimension of palliative patients, and which vocabulary GPs use when doing this. DESIGN AND SETTING: Qualitative study amongst Dutch GPs. Participants were recruited by purposive sampling and snowballing, considering gender, working experience and ideological personal beliefs. METHOD: Semi-structured in-depth interviews were performed, transcribed and analysed using content analysis. RESULTS: Seventeen GPs participated. Three themes were identified: Language, Perceived role and Practice. Interviewees generally saw it as their role to pay attention to the existential dimension of palliative patients. However, not all knew how to define this role, or how to refer patients with existential struggles to a spiritual counsellor. The multidisciplinary Dutch guideline 'Existential and Spiritual Aspects of Palliative Care' seemed largely unknown. Interviewees mostly fulfilled their role in an intuitive, pragmatic way. Questions such as "What does it mean for you to be seriously ill?" or "Do you have support from someone or something?" fitted daily practice. CONCLUSION: This study emphasizes the importance of basic GP education in exploring existential issues. The coexistence of a professionally obliged attention and an intuitive approach seems to be in conflict. We recommend appropriate training for GPs, research on the potential enhancement of collaboration between GPs and spiritual counsellors and implementation of the relevant guideline on well-known platforms.


Subject(s)
General Practitioners , Palliative Care , Attitude of Health Personnel , Humans , Language , Physician-Patient Relations , Qualitative Research
7.
BMC Palliat Care ; 21(1): 37, 2022 Mar 17.
Article in English | MEDLINE | ID: mdl-35300674

ABSTRACT

BACKGROUND: An advanced cancer patient's life is often disturbed by fear of cancer recurrence, cancer progress, approaching suffering, and fear of dying. Consequently, the role of the medical oncologist is not only to provide best quality anti-cancer treatment, but also to address the impact of disease and treatment on a patient's life, the lived illness experience. We aimed to gain insights into whether and how medical oncologists working at an outpatient clinic identify and explore lived illness experiences raised by patients with advanced cancer, and how this influences patients' responses. METHODS: Conversation Analysis was applied to analyse 16 verbatim transcribed audio-recorded consultations. RESULTS: We identified 37 fragments in which patients expressed a lived experience from 11 of the 16 consultations. We found differing responses from different oncologists. Patients continued talking about their lived experiences if the listener produced a continuer such as humming or tried to capture the experience in their own words. In contrast, a response with optimistic talking or the presentation of medical evidence prevented patients from further unfolding the experience. In consultations in which the lived illness experience was most extensively unfolded, medical oncologists and patients could constantly see each other's facial expressions. CONCLUSIONS: When a patient with advanced cancer spontaneously introduces a lived illness experience, it helps to identify and explore it when the medical oncologist produces a continuer or tries to capture this experience in their own words. Our findings can be implemented in training sessions, followed by frequent reinforcement in daily care.


Subject(s)
Neoplasms , Oncologists , Communication , Humans , Neoplasms/complications , Neoplasms/therapy
8.
BMC Med Ethics ; 22(1): 158, 2021 11 30.
Article in English | MEDLINE | ID: mdl-34847897

ABSTRACT

BACKGROUND: General practitioners often act as gatekeeper, authorizing patients' access to hospital care. This gatekeeping role became even more important during the current COVID-19 crisis as uncertainties regarding COVID-19 made estimating the desirability of hospital referrals (for outpatient or inpatient hospitalization) complex, both for COVID and non-COVID suspected patients. This study explored Dutch general practitioners' experiences and ethical dilemmas faced in decision making about hospital referrals in times of the COVID-19 pandemic. METHODS: Semi-structured interviews with Dutch general practitioners working in the Netherlands were conducted. Participants were recruited via purposive sampling. Thematic analysis was conducted using content coding. RESULTS: Fifteen interviews were conducted, identifying four themes: one overarching regarding (1) COVID-19 uncertainties, and three themes about experienced ethical dilemmas: (2) the patients' self-determination vs. the general practitioners' paternalism, (3) the general practitioners' duty of care vs. the general practitioners' autonomy rights, (4) the general practitioners' duty of care vs. adequate care provision. CONCLUSIONS: Lack of knowledge about COVID-19, risks to infect loved ones, scarcity of hospital beds and loneliness of patients during hospital admission were central in dilemmas experienced. When developing guidelines for future crises, this should be taken into account.


Subject(s)
COVID-19 , General Practitioners , Attitude of Health Personnel , Humans , Pandemics , Qualitative Research , Referral and Consultation , SARS-CoV-2
9.
Palliat Med ; 35(7): 1238-1248, 2021 07.
Article in English | MEDLINE | ID: mdl-34041987

ABSTRACT

BACKGROUND: In 2020, the COVID-19 pandemic caused an acute risk of deterioration and dying for many, and an urgent need to start advance care planning. AIM: To explore how general practitioners (GPs) experienced discussing values, goals and preferences with patients during COVID-19. DESIGN AND SETTING: Qualitative research in general practice. METHODS: Semi-structured interviews for which Dutch GPs were recruited via purposive sampling. Content analysis was used. RESULTS: Fifteen GPs were interviewed. Six themes were identified: (i) urge of advance care planning, (ii) the GP's perceived role in it, (iii) preparations for it, (iv) (proactively) discussing it, (v) essentials for good communication and (vi) advance care planning in the (near) future. Calls for proactively discussing advance care planning in the media and in COVID-guidelines caused awareness of it's importance. GPs envisaged an important role for themselves in initiating it, especially with patients at risk to deteriorate or die from COVID-19. Timing advance care planning appeared difficult but crucial. The recommended digital way of communication was considered problematic due to missing nonverbal communication and difficulties in involving relatives. It was noted that admission to the ICU, which was hardly discussed before the COVID-19 pandemic, should remain a topic during advance care planning. CONCLUSION: The COVID-19 pandemic brought advance care planning into a new light, GPs were more experienced with discussing it and patients were more aware of their frailty. Because of the nearing 'grey wave', advance care planning should remain top priority. Therefore, it should be central in GP and post-academic training.


Subject(s)
Advance Care Planning , COVID-19 , General Practitioners , Attitude of Health Personnel , Humans , Pandemics , Qualitative Research , SARS-CoV-2
10.
J Am Med Dir Assoc ; 22(2): 297-304, 2021 02.
Article in English | MEDLINE | ID: mdl-33221300

ABSTRACT

OBJECTIVES: This study presents the design of an integrated, proactive palliative care pathway covering the full care cycle and evaluates its effects using 3 types of outcomes: (1) physician-reported outcomes, (2) outcomes reported by family, and (3) (utilization of) health care outcomes. DESIGN: A clustered, partially controlled before-after study with a multidisciplinary integrated palliative care pathway as its main intervention. SETTING AND PARTICIPANTS: after assessment in hospital departments of oncology, and geriatrics, and in 13 primary care facilities, terminally ill patients were proactively included into the pathway. Patients' relatives and patients' general practitioners (GPs) participated in a before/after survey and in interviews and focus groups. INTERVENTION: A multidisciplinary, integrated palliative care pathway encompassing (among others) early identification of the palliative phase, multidisciplinary consultation and coordination, and continuous monitoring of outcomes. MEASURES: Measures included GP questionnaire: perceived quality of palliative care; questionnaires by family members: FAMCARE, QOD-LTC, EDIZ; and 3 types of health care outcomes: (1) utilization of primary care: consultations, intensive care, communication, palliative home visits, consultations and home visits during weekends and out-of-office-hours, ambulance, admission to hospital; (2) utilization of hospital care: outpatient ward consultations, day care, emergency room visits, inpatient care, (radio) diagnostics, surgical procedures, other therapeutic activities, intensive care unit activities; (3) pharmaceutical care utilization. RESULTS: GPs reported that palliative patients die more often at their preferred place of death, and that they now act more proactively toward palliative patients. Relatives of included, deceased patients reported clinically relevant improved quality of dying, and more timely palliative care. Patients in the pathway received more (intensive) primary care, less unexpected care during out-of-office hours, and more often received hospital care in the form of day care. CONCLUSIONS AND IMPLICATIONS: An integrated palliative care pathway improves a variety of clinical outcomes important to patients, their families, physicians, and the health care system. The integration of palliative care into multidisciplinary, proactive palliative care pathways, is therefore a desirable future development.


Subject(s)
General Practitioners , Palliative Care , Controlled Before-After Studies , Critical Care , Humans , Surveys and Questionnaires
11.
BMC Med ; 18(1): 258, 2020 09 22.
Article in English | MEDLINE | ID: mdl-32957971

ABSTRACT

BACKGROUND: The number of residents in long-term care facilities (LTCFs) in need of palliative care is growing in the Western world. Therefore, it is foreseen that significantly higher percentages of budgets will be spent on palliative care. However, cost-effectiveness analyses of palliative care interventions in these settings are lacking. Therefore, the objective of this paper was to assess the cost-effectiveness of the 'PACE Steps to Success' intervention. PACE (Palliative Care for Older People) is a 1-year palliative care programme aiming at integrating general palliative care into day-to-day routines in LTCFs, throughout seven EU countries. METHODS: A cluster RCT was conducted. LTCFs were randomly assigned to intervention or usual care. LTCFs reported deaths of residents, about whom questionnaires were filled in retrospectively about resource use and quality of the last month of life. A health care perspective was adopted. Direct medical costs, QALYs based on the EQ-5D-5L and costs per quality increase measured with the QOD-LTC were outcome measures. RESULTS: Although outcomes on the EQ-5D-5L remained the same, a significant increase on the QOD-LTC (3.19 points, p value 0.00) and significant cost-savings were achieved in the intervention group (€983.28, p value 0.020). The cost reduction mainly resulted from decreased hospitalization-related costs (€919.51, p value 0.018). CONCLUSIONS: Costs decreased and QoL was retained due to the PACE Steps to Success intervention. Significant cost savings and improvement in quality of end of life (care) as measured with the QOD-LTC were achieved. A clinically relevant difference of almost 3 nights shorter hospitalizations in favour of the intervention group was found. This indicates that timely palliative care in the LTCF setting can prevent lengthy hospitalizations while retaining QoL. In line with earlier findings, we conclude that integrating general palliative care into daily routine in LTCFs can be cost-effective. TRIAL REGISTRATION: ISRCTN14741671 .


Subject(s)
Cost-Benefit Analysis/methods , Long-Term Care/economics , Nursing Homes/economics , Quality of Life/psychology , Aged, 80 and over , Female , Humans , Male , Retrospective Studies
12.
BMC Health Serv Res ; 20(1): 659, 2020 Jul 16.
Article in English | MEDLINE | ID: mdl-32678021

ABSTRACT

BACKGROUND: The Quality-Adjusted Life Year (QALY) is internationally recognized as standard metric of health outcomes in cost-effectiveness analyses (CEAs) in healthcare. The ongoing debate concerning the appropriateness of its use for decision-making in palliative care has been recently mapped in a review. The aim was to report on and draw conclusions from two expert meetings that reflected on earlier mapped issues in order to reach consensus, and to advise on the QALY's future use in palliative care. METHODS: A nominal group approach was used. In order to facilitate group decision making, three statements regarding the use of the QALY in palliative care were discussed in a structured way. Two groups of international policymakers, healthcare professionals and researchers participated. Data were analysed qualitatively using inductive coding. RESULTS: 1) Most experts agreed that the recommended measurement tool for the QALYs 'Q' component, the EuroQol-5D (EQ-5D), is inappropriate for palliative care. A more sensitive tool, which might be based on the capabilities approach, could be used or developed. 2) Valuation of time should be incorporated in the 'Q' part, leaving the linear clock time in the 'LY' component. 3) Most experts agreed that the QALY, in its current shape, is not suitable for palliative care. CONCLUSIONS: 1) Although the EQ-5D does not suffice, a generic tool is needed for the QALY. As long as no suitable alternative is available, other tools can be used besides or serve as basis for the EQ-5D because of issues in conceptual overlap. 2) Future research should further investigate the valuation of time issue, and how best to integrate it in the 'Q' component. 3) A generic outcome measure of effectiveness is essential to justly allocate healthcare resources. However, experts emphasized, the QALY is and should be one of multiple criteria for choices in the healthcare insurance package.


Subject(s)
Cost-Benefit Analysis/methods , Palliative Care/economics , Quality-Adjusted Life Years , Decision Making , Humans , Outcome Assessment, Health Care , Quality of Life , Resource Allocation
13.
BMC Palliat Care ; 18(1): 40, 2019 May 14.
Article in English | MEDLINE | ID: mdl-31088442

ABSTRACT

BACKGROUND: The aim of this study was to gain insight into the experience of time of terminal patients with cancer. Experience of time is relevant in palliative care in both policy and practice. On a policy level, the Quality Adjusted Life Year (QALY), the most used outcome measure for cost-effectiveness analysis in healthcare, assumes time to be a linear and additive variable, which is one of the reasons that its applicability in palliative care is questioned. On a practice level, a better understanding of the experience of time of patients with limited time left, could help to recognize if and how these patients can have a more meaningful use of time. The main focus of this study was to discover whether time perception of these patients in their last months of life had changed as compared to earlier periods of time in their lives in good physical health. The pace of time and time dominance (comparison of past, present and future) were investigated. METHODS: In several hospices and palliative care units in the Netherlands, twelve semi-structured interviews were conducted with terminal patients with cancer. RESULTS: Time perception at the end of life had changed for most participants. They all lived on a day-to-day basis in the terminal phase, independent of their way of life in the healthy phase. Furthermore, the experienced duration of a day turned out to be very different between patients, but also between days, depending on daily activities. Besides, for most patients for whom the future was the dominant period of time in the healthy phase, the dominant period of time in the terminal phase had become the past. CONCLUSIONS: Time perception of terminal patients with cancer differed from the time perception in their relatively healthy phase of life. This suggests that the LY part of the QALY is not comparable for all phases of life.


Subject(s)
Attitude to Death , Life Change Events , Neoplasms/psychology , Aged , Aged, 80 and over , Female , Humans , Interviews as Topic/methods , Male , Middle Aged , Neoplasms/complications , Netherlands , Qualitative Research , Terminal Care/methods , Time Factors
15.
BMC Fam Pract ; 19(1): 184, 2018 11 28.
Article in English | MEDLINE | ID: mdl-30486774

ABSTRACT

BACKGROUND: Although it is often recommended that general practitioners (GPs) initiate advance care planning (ACP), little is known about their experiences with ACP. This study aimed to identify GP experiences when conducting ACP conversations with palliative patients, and what factors influence these experiences. METHODS: Dutch GPs (N = 17) who had participated in a training on timely ACP were interviewed. Data from these interviews were analysed using direct content analysis. RESULTS: Four themes were identified: ACP and society, the GP's perceived role in ACP, initiating ACP and tailor-made ACP. ACP was regarded as a 'hot topic'. At the same time, a tendency towards a society in which death is not a natural part of life was recognized, making it difficult to start ACP discussions. Interviewees perceived having ACP discussions as a typical GP task. They found initiating and timing ACP easier with proactive patients, e.g. who are anxious of losing capacity, and much more challenging when it concerned patients with COPD or heart failure. Patients still being treated in hospital posed another difficulty, because they often times are not open to discussion. Furthermore, interviewees emphasized that taking into account changing wishes and the fact that not everything can be anticipated, is of the utmost importance. Moreover, when patients are not open to ACP, at a certain point it should be granted that choosing not to know, for example about where things are going or what possible ways of care planning might be, is also a form of autonomy. CONCLUSIONS: ACP currently is a hot topic, which has favourable as well as unfavourable effects. As GPs experience difficulties in initiating ACP if patients are being treated in the hospital, future research could focus on a multidisciplinary ACP approach and the role of medical specialists in ACP. Furthermore, when starting ACP with palliative patients, we recommend starting with current issues. In doing so, a start can be made with future issues kept in view. Although the tension between ACP's focus on the patient's direction and the right not to know can be difficult, ACP has to be tailored to each individual patient.


Subject(s)
Advance Care Planning/organization & administration , Attitude of Health Personnel , Communication , General Practitioners/standards , Palliative Care/organization & administration , Physician-Patient Relations , Qualitative Research , Adult , Aged , Female , Humans , Male , Middle Aged , Practice Patterns, Physicians' , Young Adult
16.
PLoS One ; 13(9): e0204120, 2018.
Article in English | MEDLINE | ID: mdl-30252888

ABSTRACT

BACKGROUND: An ageing population in the EU leads to a higher need of long-term institutional care at the end of life. At the same time, healthcare costs rise while resources remain limited. Consequently, an urgency to extend our knowledge on factors affecting efficiency of long-term care facilities (LTCFs) arises. This study aims to investigate and explain variation in technical efficiency of end-of-life care within and between LTCFs of six EU countries: Belgium (Flanders), England, Finland, Italy, the Netherlands and Poland. In this study, technical efficiency reflects the LTCFs' ability to obtain maximal quality of life (QoL) and quality of dying (QoD) for residents from a given set of resource inputs (personnel and capacity). METHODS: Cross-sectional data were collected by means of questionnaires on deceased residents identified by LTCFs over a three-month period. An output-oriented data-envelopment analysis (DEA) was performed, producing efficiency scores, incorporating personnel and capacity as input and QoL and QoD as output. Scenario analysis was conducted. Regression analysis was performed on explanatory (country, LTCF type, ownership, availability of palliative care and opioids) and case mix (disease severity) variables. RESULTS: 133 LTCFs of only one type (onsite nurses and offsite GPs) were considered in order to reduce heterogeneity. Variation in LTCF efficiency was found across as well as within countries. This variation was not explained by country, ownership, availability of palliative care or opioids. However, in the 'hands-on care at the bedside' scenario, i.e. only taking into account nursing and care assistants as input, Poland (p = 0.00) and Finland (p = 0.04) seemed to be most efficient. CONCLUSIONS: Efficiency of LTCFs differed extensively across as well as within countries, indicating room for considerable efficiency improvement. Our findings should be interpreted cautiously, as comprehensive comparative EU-wide research is challenging as it is influenced by many factors.


Subject(s)
European Union , Long-Term Care , Terminal Care , Bias , Cross-Sectional Studies , Europe , Humans , Regression Analysis
17.
BMC Palliat Care ; 17(1): 47, 2018 Mar 12.
Article in English | MEDLINE | ID: mdl-29530091

ABSTRACT

BACKGROUND: Several studies have highlighted the need for improvement in palliative care delivered to older people long-term care facilities. However, the available evidence on how to improve palliative care in these settings is weak, especially in Europe. We describe the protocol of the PACE trial aimed to 1) evaluate the effectiveness and cost-effectiveness of the 'PACE Steps to Success' palliative care intervention for older people in long-term care facilities, and 2) assess the implementation process and identify facilitators and barriers for implementation in different countries. METHODS: We will conduct a multi-facility cluster randomised controlled trial in Belgium, Finland, Italy, the Netherlands, Poland, Switzerland and England. In total, 72 facilities will be randomized to receive the 'Pace Steps to Success intervention' or to 'care as usual'. Primary outcome at resident level: quality of dying (CAD-EOLD); and at staff level: staff knowledge of palliative care (Palliative Care Survey). SECONDARY OUTCOMES: resident's quality of end-of-life care, staff self-efficacy, self-perceived educational needs, and opinions on palliative care. Economic outcomes: direct costs and quality-adjusted life years (QALYs). Measurements are performed at baseline and after the intervention. For the resident-level outcomes, facilities report all deaths of residents in and outside the facilities over a previous four-month period and structured questionnaires are sent to (1) the administrator, (2) staff member most involved in care (3) treating general practitioner, and (4) a relative. For the staff-level outcomes, all staff who are working in the facilities are asked to complete a structured questionnaire. A process evaluation will run alongside the effectiveness evaluation in the intervention group using the RE-AIM framework. DISCUSSION: The lack of high quality trials in palliative care has been recognized throughout the field of palliative care research. This cross-national cluster RCT designed to evaluate the impact of the palliative care intervention for long-term care facilities 'PACE Steps to Success' in seven countries, will provide important evidence concerning the effectiveness as well as the preconditions for optimal implementation of palliative care in nursing homes, and this within different health care systems. TRIAL REGISTRATION: The study is registered at www.isrctn.com - ISRCTN14741671 (FP7-HEALTH-2013-INNOVATION-1 603111) Registration date: July 30, 2015.


Subject(s)
Palliative Care/methods , Skilled Nursing Facilities/standards , Skilled Nursing Facilities/trends , Belgium , Delivery of Health Care/standards , England , Finland , Humans , Italy , Netherlands , Poland , Quality Improvement/standards , Surveys and Questionnaires , Switzerland
18.
Palliat Med ; 31(4): 306-322, 2017 04.
Article in English | MEDLINE | ID: mdl-28190374

ABSTRACT

BACKGROUND: In cost-effectiveness analyses in healthcare, Quality-Adjusted Life Years are often used as outcome measure of effectiveness. However, there is an ongoing debate concerning the appropriateness of its use for decision-making in palliative care. AIM: To systematically map pros and cons of using the Quality-Adjusted Life Year to inform decisions on resource allocation among palliative care interventions, as brought forward in the debate, and to discuss the Quality-Adjusted Life Year's value for palliative care. DESIGN: The integrative review method of Whittemore and Knafl was followed. Theoretical arguments and empirical findings were mapped. DATA SOURCES: A literature search was conducted in PubMed, EMBASE, and CINAHL, in which MeSH (Medical Subject Headings) terms were Palliative Care, Cost-Benefit Analysis, Quality of Life, and Quality-Adjusted Life Years. FINDINGS: Three themes regarding the pros and cons were identified: (1) restrictions in life years gained, (2) conceptualization of quality of life and its measurement, including suggestions to adapt this, and (3) valuation and additivity of time, referring to changing valuation of time. The debate is recognized in empirical studies, but alternatives not yet applied. CONCLUSION: The Quality-Adjusted Life Year might be more valuable for palliative care if specific issues are taken into account. Despite restrictions in life years gained, Quality-Adjusted Life Years can be achieved in palliative care. However, in measuring quality of life, we recommend to-in addition to the EQ-5D- make use of quality of life or capability instruments specifically for palliative care. Also, we suggest exploring the possibility of integrating valuation of time in a non-linear way in the Quality-Adjusted Life Year.


Subject(s)
Cost-Benefit Analysis/standards , Palliative Care/economics , Quality-Adjusted Life Years , Humans
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