40 results on '"Engels, Yvonne"'
Search Results
2. Oncologist responses to advanced cancer patients’ lived illness experiences and effects: an applied conversation analysis study
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van Meurs, Jacqueline, Stommel, Wyke, Leget, Carlo, van de Geer, Joep, Kuip, Evelien, Vissers, Kris, Engels, Yvonne, and Wichmann, Anne
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- 2022
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3. Correction: Oncologist responses to advanced cancer patients’ lived illness experiences and effects: an applied conversation analysis study
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van Meurs, Jacqueline, Stommel, Wyke, Leget, Carlo, van de Geer, Joep, Kuip, Evelien, Vissers, Kris, Engels, Yvonne, and Wichmann, Anne
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- 2022
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4. The GP’s perceived role and use of language concerning the existential dimension of palliative patients: a Dutch interview study
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Busser, Sara T., Rens, Jeanne, Thoonsen, Bregje, Engels, Yvonne, and Wichmann, Anne B.
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- 2022
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5. “When I am breathless now, I don’t have the fear that’s linked to it”: a case series on the potential of EMDR to break the dyspnea-anxiety cycle in COPD
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Mooren, Kris, Smit, Kirsten, Engels, Yvonne, Janssen, Daisy, and Godschalx, Judith
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- 2022
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6. Implementation of a palliative care intervention for patients with COPD – a mixed methods process evaluation of the COMPASSION study
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Broese, Johanna M. C., van der Kleij, Rianne M. J. J., Verschuur, Els M. L., Kerstjens, Huib A. M., Engels, Yvonne, and Chavannes, Niels H.
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- 2022
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7. What to consider when implementing a tool for timely recognition of palliative care needs in heart failure: a context-based qualitative study
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Ament, Stephanie M. C., van den Broek, Lisette M., van den Beuken-van Everdingen, Marieke H. J., Boyne, Josiane J. J., Maessen, José M. C., Bekkers, Sebastiaan C. A. M., Bellersen, Louise, Rocca, Hans-Peter Brunner-La, Engels, Yvonne, and Janssen, Daisy J. A.
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- 2022
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8. Making complex decisions in uncertain times: experiences of Dutch GPs as gatekeepers regarding hospital referrals during COVID-19—a qualitative study
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Westerduin, Dieke, Dujardin, Janneke, Schuurmans, Jaap, Engels, Yvonne, and Wichmann, Anne B.
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- 2021
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9. Life-sustaining treatment preferences in older patients when referred to the emergency department for acute geriatric assessment: a descriptive study in a Dutch hospital
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Ermers, Daisy J. M., van Beuningen-van Wijk, Marit P. H., Rit, Evi Peters, Stalpers-Konijnenburg, Sonja C., Taekema, Diana G., Bosch, Frank H., Engels, Yvonne, and van Mierlo, Patricia J. W. B.
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- 2021
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10. Experiences of bereaved family caregivers with shared decision making in palliative cancer treatment: a qualitative interview study
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van Oosterhout, Sanne P. C., Ermers, Daisy J. M., Ploos van Amstel, Floor K., van Herpen, Carla M. L., Schoon, Yvonne, Perry, Marieke, van Geel, Maartje, Kuip, Evelien J. M., and Engels, Yvonne
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- 2021
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11. Euthanasia in advanced dementia; the view of the general practitioners in the Netherlands on a vignette case along the juridical and ethical dispute
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Schuurmans, Jaap, Crol, Chantalle, Chabot, Boudewijn, Olde Rikkert, Marcel, and Engels, Yvonne
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- 2021
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12. A cluster randomized controlled trial on a multifaceted implementation strategy to promote integrated palliative care in COPD: study protocol of the COMPASSION study
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Broese, Johanna M. C., van der Kleij, Rianne M. J. J., Kerstjens, Huib A. M., Verschuur, Els M. L., Engels, Yvonne, and Chavannes, Niels H.
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- 2020
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13. Advance care planning with people with dementia: a process evaluation of an educational intervention for general practitioners
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Tilburgs, Bram, Koopmans, Raymond, Schers, Henk, Smits, Carolien, Vernooij-Dassen, Myrra, Perry, Marieke, and Engels, Yvonne
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- 2020
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14. Correction to: An online international comparison of thresholds for triggering a negative response to the “Surprise Question”: a study protocol
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White, Nicola, Oostendorp, Linda, Vickerstaff, Victoria, Gerlach, Christina, Engels, Yvonne, Maessen, Maud, Tomlinson, Christopher, Wens, Johan, Leysen, Bert, Biasco, Guido, Zambrano, Sofia, Eychmüller, Steffen, Avgerinou, Christina, Chattat, Rabih, Ottoboni, Giovanni, Veldhoven, Carel, and Stone, Patrick
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- 2020
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15. Implementing the theory-based advance care planning ACP+ programme for nursing homes: study protocol for a cluster randomised controlled trial and process evaluation
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Gilissen, Joni, Pivodic, Lara, Wendrich-van Dael, Annelien, Gastmans, Chris, Vander Stichele, Robert, Engels, Yvonne, Vernooij-Dassen, Myrra, Deliens, Luc, and Van den Block , Lieve
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- 2020
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16. Euthanasia requests in dementia cases; what are experiences and needs of Dutch physicians? A qualitative interview study
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Schuurmans, Jaap, Bouwmeester, Romy, Crombach, Lamar, van Rijssel, Tessa, Wingens, Lizzy, Georgieva, Kristina, O’Shea, Nadine, Vos, Stephanie, Tilburgs, Bram, and Engels, Yvonne
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- 2019
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17. An online international comparison of thresholds for triggering a negative response to the “Surprise Question”: a study protocol
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White, Nicola, Oostendorp, Linda, Vickerstaff, Victoria, Gerlach, Christina, Engels, Yvonne, Maessen, Maud, Tomlinson, Christopher, Wens, Johan, Leysen, Bert, Biasco, Guido, Zambrano, Sofia, Eychmüller, Steffen, Avgerinou, Christina, Chattat, Rabih, Ottoboni, Giovanni, Veldhoven, Carel, and Stone, Patrick
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- 2019
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18. The importance of trust-based relations and a holistic approach in advance care planning with people with dementia in primary care: a qualitative study
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Tilburgs, Bram, Vernooij-Dassen, Myrra, Koopmans, Raymond, Weidema, Marije, Perry, Marieke, and Engels, Yvonne
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- 2018
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19. Integrating palliative care in long-term care facilities across Europe (PACE): protocol of a cluster randomized controlled trial of the ‘PACE Steps to Success’ intervention in seven countries
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Smets, Tinne, Onwuteaka-Philipsen, Bregje B. D., Miranda, Rose, Pivodic, Lara, Tanghe, Marc, van Hout, Hein, Pasman, Roeline H. R. W., Oosterveld-Vlug, Mariska, Piers, Ruth, Van Den Noortgate, Nele, Wichmann, Anne B., Engels, Yvonne, Vernooij-Dassen, Myrra, Hockley, Jo, Froggatt, Katherine, Payne, Sheila, Szczerbińska, Katarzyna, Kylänen, Marika, Leppäaho, Suvi, Barańska, Ilona, Gambassi, Giovanni, Pautex, Sophie, Bassal, Catherine, Deliens, Luc, Van den Block, Lieve, and on behalf of the PACE trial group
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- 2018
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20. A framework for cross-cultural development and implementation of complex interventions to improve palliative care in nursing homes: the PACE steps to success programme.
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Hockley, Jo, Froggatt, Katherine, Van den Block, Lieve, Onwuteaka-Philipsen, Bregje, Kylänen, Marika, Szczerbińska, Katarzyna, Gambassi, Giovanni, Pautex, Sophie, Payne, Sheila Alison, on behalf of PACE, Arrue, Borja, Baranska, Ilona, Deliens, Luc, Engels, Yvonne, Finne-Soveri, Harriet, Kijowska, Viola, ten Koppel, Maud, Kylanen, Marika, Mammarella, Federica, and Smets, Tinne
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PALLIATIVE treatment ,NURSING home care ,NURSING home employees ,NURSING care facilities ,NURSING interventions ,UNIVERSAL language ,LONG-term care facilities ,CLUSTER randomized controlled trials ,QUALITY assurance standards ,COMPARATIVE studies ,LONG-term health care ,RESEARCH methodology ,MEDICAL cooperation ,RESEARCH ,RESEARCH funding ,TERMINAL care ,ETHNOLOGY research ,EVALUATION research ,RANDOMIZED controlled trials - Abstract
Background: The PACE Steps to Success programme is a complex educational and development intervention to improve palliative care in nursing homes. Little research has investigated processes in the cross-cultural adaptation and implementation of interventions in palliative care across countries, taking account of differences in health and social care systems, legal and regulatory policies, and cultural norms. This paper describes a framework for the cross-cultural development and support necessary to implement such an intervention, taking the PACE Steps to Success programme as an exemplar.Methods: The PACE Steps to Success programme was implemented as part of the PACE cluster randomised control trial in seven European countries. A three stage approach was used, a) preparation of resources; b) training in the intervention using a train-the-trainers model; and c) cascading support throughout the implementation. All stages were underpinned by cross-cultural adaptation, including recognising legal and cultural norms, sensitivities and languages. This paper draws upon collated evidence from minutes of international meetings, evaluations of training delivered, interviews with those delivering the intervention in nursing homes and providing and/or receiving support.Results: Seventy eight nursing homes participated in the trial, with half randomized to receive the intervention, 3638 nurses/care assistants were identified at baseline. In each country, 1-3 trainers were selected (total n = 16) to deliver the intervention. A framework was used to guide the cross-cultural adaptation and implementation. Adaptation of three English training resources for different groups of staff consisted of simplification of content, identification of validated implementation tools, a review in 2 nursing homes in each country, and translation into local languages. The same training was provided to all country trainers who cascaded it into intervention nursing homes in local languages, and facilitated it via in-house PACE coordinators. Support was cascaded from country trainers to staff implementing the intervention.Conclusions: There is little guidance on how to adapt complex interventions developed in one country and language to international contexts. This framework for cross-cultural adaptation and implementation of a complex educational and development intervention may be useful to others seeking to transfer quality improvement initiatives in other contexts. [ABSTRACT FROM AUTHOR]- Published
- 2019
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21. Improving palliative care in selected settings in England using quality indicators: a realist evaluation.
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Iliffe, Steve, Davies, Nathan, Manthorpe, Jill, Crome, Peter, Ahmedzai, Sam H., Vernooij-Dassen, Myrra, and Engels, Yvonne
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CANCER patients ,CLINICAL medicine ,DEMENTIA ,HOSPICE care ,NURSING specialties ,PALLIATIVE treatment ,QUALITY assurance ,HOSPICE nurses ,KEY performance indicators (Management) - Abstract
Background: There is a gap between readily available evidence of best practice and its use in everyday palliative care. The IMPACT study evaluated the potential of facilitated use of Quality Indicators as tools to improve palliative care in different settings in England. Methods: 1) Modelling palliative care services and selecting a set of Quality Indicators to form the core of an intervention, 2) Case studies of intervention using the Quality Indicator set supported by an expert in service change in selected settings (general practice, community palliative care teams, care homes, hospital wards, in-patient hospices) with a before-and-after evaluation, and 3) realist evaluation of processes and outcomes across settings. Participants in each setting were supported to identify no more than three Quality Indicators to work on over an eight-month period in 2013/2014. Results: General practices could not be recruited to the study. Care homes were recruited but not retained. Hospital wards were recruited and retained, and using the Quality Indicator (QI) set achieved some of their desired changes. Hospices and community palliative care teams were able to use the QI set to achieve almost all their desired changes, and develop plans for quality improvements. Improvements included: increasing the utility of electronic medical records, writing a manual for end of life care, establishing working relationships with a hospice; standardising information transfer between settings, holding regular multi-disciplinary team meetings, exploration of family carers' views and experiences; developing referral criteria, and improvement of information transfer at patient discharge to home or to hospital. Realist evaluation suggested that: 1) uptake and use of QIs are determined by organisational orientation towards continuous improvement; 2) the perceived value of a QI package was not powerful enough for GPs and care homes to commit to or sustain involvement; 3) the QI set may have been to narrow in focus, or more specialist than generalist; and 4) the greater the settings''top-down' engagement with this change project, the more problematic was its implementation. Conclusions: Whilst use of QIs may facilitate improvements in specialist palliative care services, different QI sets may be needed for generalist care settings. [ABSTRACT FROM AUTHOR]
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- 2016
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22. Timely identification of palliative patients and anticipatory care planning by GPs: practical application of tools and a training programme.
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Thoonsen, Bregje, Groot, Marieke, Verhagen, Stans, van Weel, Chris, Vissers, Kris, and Engels, Yvonne
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CONTENT analysis ,EXPERIMENTAL design ,FOCUS groups ,GLOBAL Positioning System ,IDENTIFICATION ,INTERVIEWING ,LONGITUDINAL method ,RESEARCH methodology ,MEDICAL protocols ,PALLIATIVE treatment ,PATIENTS ,QUESTIONNAIRES ,RESEARCH evaluation ,STATISTICAL sampling ,STATISTICS ,TERMINAL care ,ADVANCE directives (Medical care) ,QUALITATIVE research ,DATA analysis ,THEMATIC analysis - Abstract
Background: Palliative care is mainly restricted to terminal care. General practitioners (GPs) are not trained to early identify palliative patients with cancer, COPD or heart failure. With the help of the RADboud indicators for PAlliative Care needs (RADPAC), we trained GPs to identify patients' needs and to make a proactive care plan. They were also able to join two role-plays where they discussed the patient's future, and consulted a palliative care consultant to fine-tune the care plan. We evaluated the programme with the GPs and consultants and noted its impact on their daily practice. Methods: Two years after they had participated in the programme, we held semi-structured interviews with the GPs and a focus group interview with the consultants and performed a thematic content analysis. Results: Six consultants and nine GPs participated in the programme. Most GPs and consultants mentioned positive changes in the thinking or acting of GPs regarding early palliative care. A number continued to use the tool to identify patients; most of the others noted they had internalised the indicators. Although half of them still considered discussing end-of-life aspects difficult, particularly in patients with organ failure, the others were more easily able to discuss the future with their palliative patients. Conclusion: Although most GPs and consultants were positive about the training programme and applying it in daily practice, we conclude that in future programmes, more attention needs to paid to timely identification of palliative patients with COPD or CHF and how to discuss the future with them. [ABSTRACT FROM AUTHOR]
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- 2016
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23. Identification of the palliative phase in people with dementia: a variety of opinions between healthcare professionals.
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Paap, Jasper van Riet, Mariani, Elena, Chattat, Rabih, Koopmans, Raymond, Kerhervé, Hélène, Leppert, Wojciech, Forycka, Maria, Radbruch, Lukas, Jaspers, Birgit, Vissers, Kris, Vernooij-Dassen, Myrra, and Engels, Yvonne
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ATTITUDE (Psychology) ,DEMENTIA ,CASE studies ,MEDICAL personnel ,NURSING care facilities ,PALLIATIVE treatment ,RESEARCH funding - Abstract
Background: People with dementia can benefit from a palliative care approach. Recommendations, such as those of the EAPC have been proposed to strengthen the provision of palliative care for this group of patients. Yet, it remains challenging for professionals to identify when a person with dementia is in need of palliative care. The objective of this study therefore was to explore when professionals in long-term care settings consider a person with dementia in need of palliative care. Methods: Teams with in total 84 professionals working in 13 long-term care settings from 6 countries (France, Germany, Italy, Norway, Poland and the Netherlands) received a case-vignette concerning a person with dementia recently admitted to a nursing home. Teams were asked to discuss when they considered people with dementia eligible for palliative care. The constant comparative method was used to analyse their answers. Results: Three different time points in the disease trajectory when people with dementia were considered to be eligible for palliative care were extracted: (1) early in the disease trajectory; (2) when signs and symptoms of advanced dementia are present; and (3) from the time point that curative treatment of co-morbidities is futile. Yet, none of these time points was uniformly considered by the professional teams across Europe. In some cases, professionals working in the same nursing home didn't even reach consensus when considering persons with dementia eligible for palliative care. Conclusion: The results of the study identified that professionals across Europe have different opinions regarding the time point when to consider a person with dementia in need of palliative care. [ABSTRACT FROM AUTHOR]
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- 2015
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24. Strategies to implement evidence into practice to improve palliative care: recommendations of a nominal group approach with expert opinion leaders.
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van Riet Paap, Jasper, Vissers, Kris, Iliffe, Steve, Radbruch, Lukas, Hjermstad, Marianne J., Chattat, Rabih, Vernooij-Dassen, Myrra, and Engels, Yvonne
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EXPERTISE ,MEDICAL personnel ,PALLIATIVE treatment ,RESEARCH funding ,EVIDENCE-based medicine ,QUALITATIVE research ,DESCRIPTIVE statistics - Abstract
Background: In the past decades, many new insights and best practices in palliative care, a relatively new field in health care, have been published. However, this knowledge is often not implemented. The aim of this study therefore was to identify strategies to implement improvement activities identified in a research project within daily palliative care practice. Methods: A nominal group technique was used with members of the IMPACT consortium, being international researchers and clinicians in cancer care, dementia care and palliative care. Participants identified and prioritized implementation strategies. Data was analyzed qualitatively using inductive coding. Results: Twenty international clinicians and researchers participated in one of two parallel nominal group sessions. The recommended strategies to implement results from a research project were grouped in five common themes: 1. Dissemination of results e.g. by publishing results tailored to relevant audiences, 2. Identification and dissemination of unique selling points, 3. education e.g. by developing e-learning tools and integrating scientific evidence into core curricula, 4. Stimulation of participation of stakeholders, and 5. consideration of consequences e.g. rewarding services for their implementation successes but not services that fail to implement quality improvement activities. Discussion: The added value of this nominal group study lies in the prioritisation by the experts of strategies to influence the implementation of quality improvement activities in palliative care. Efforts to ensure future use of scientific findings should be built into research projects in order to prevent waste of resources. [ABSTRACT FROM AUTHOR]
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- 2015
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25. Implementation of improvement strategies in palliative care: an integrative review.
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van Riet Paap, Jasper, Vernooij-Dassen, Myrra, Sommerbakk, Ragni, Moyle, Wendy, Hjermstad, Marianne J., Leppert, Wojciech, Vissers, Kris, Engels, Yvonne, and IMPACT research team
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PALLIATIVE treatment ,TREATMENT of dementia ,QUALITY of life ,MEDICAL quality control ,HEALTH outcome assessment ,DEMENTIA care mapping - Abstract
Background: The European population is ageing, and as a consequence, an increasing number of patients are in need of palliative care, including those with dementia. Although a growing number of new insights and best practices in palliative care have been published, they are often not implemented in daily practice. The aim of this integrative review is to provide an overview of implementation strategies that have been used to improve the organisation of palliative care.Methods: Using an integrative literature review, we evaluated publications with strategies to improve the organisation of palliative care. Qualitative analysis of the included studies involved categorisation of the implementation strategies into subgroups, according to the type of implementation strategy.Results: From the 2379 publications identified, 68 studies with an experimental or quasi-experimental design were included. These studies described improvements using educational strategies (n = 14), process mapping (n = 1), feedback (n = 1), multidisciplinary meetings (n = 1) and multi-faceted implementation strategies (n = 51). Fifty-three studies reported positive outcomes, 11 studies reported mixed effects and four studies showed a limited effect (two educational and two multi-faceted strategies).Conclusions: This review is one of the first to provide an overview of the available literature in relation to strategies used to improve the organisation of palliative care. Since most studies reported positive results, further research is needed to identify and improve the effects of strategies aiming to improve the organisation of palliative care. [ABSTRACT FROM AUTHOR]- Published
- 2015
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26. Consensus on quality indicators to assess the organisation of palliative cancer and dementia care applicable across national healthcare systems and selected by international experts.
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van Riet Paap, Jasper, Vernooij-Dassen, Myrra, Dröes, Rose-Marie, Radbruch, Lukas, Vissers, Kris, and Engels, Yvonne
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CANCER patients ,MEDICAL care ,DEMENTIA patients ,PUBLIC health ,PAIN - Abstract
Background: Large numbers of vulnerable patients are in need of palliative cancer and dementia care. However, a wide gap exists between the knowledge of best practices in palliative care and their use in everyday clinical practice. As part of a European policy improvement program, quality indicators(QIs) have been developed to monitor and improve the organisation of palliative care for patients with cancer and those with dementia in various settings in different European countries. Method: A multidisciplinary, international panel of professionals participated in a modified RAND Delphi procedure to compose a set of palliative care QIs based on existing sets of QIs on the organisation of palliative care. Panellists participated in three written rounds, one feedback round and one meeting. The panel's median votes were used to identify the final set of QIs. Results: The Delphi procedure resulted in 23 useful QIs. These QIs represent key elements of the organisation of good clinical practice, such as the availability of palliative care teams, the availability of special facilities to provide palliative care for patients and their relatives, and the presence of educational interventions for professionals. The final set also includes QIs that are related to the process of palliative care, such as documentation of pain and other symptoms, communication with patients in need of palliative care and their relatives, and end-of-life decisions. Conclusion: International experts selected a set of 23 QIs for the organisation of palliative care. Although we particularly focused on the organisation of cancer and dementia palliative care, most QIs are generic and are applicable for other types of diseases as well. [ABSTRACT FROM AUTHOR]
- Published
- 2014
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27. PROLONG: a cluster controlled trial to examine identification of patients with COPD with poor prognosis and implementation of proactive palliative care.
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Duenk, Ria G., Heijdra, Yvonne, Verhagen, Stans C., Dekhuijzen, Richard P. N. R., Vissers, Kris C. P., and Engels, Yvonne
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Background: Proactive palliative care is not yet common practice for patients with COPD. Important barriers are the identification of patients with a poor prognosis and the organization of proactive palliative care dedicated to the COPD patient. Recently a set of indicators has been developed to identify those patients with COPD hospitalized for an acute exacerbation who are at risk for post-discharge mortality. Only after identification of these patients with poor prognosis a multi disciplinary approach to proactive palliative care with support of a specialized palliative care team can be initiated. Methods/Design: The PROLONG study is a prospective cluster controlled trial in which 6 hospitals will participate. Three hospitals are selected for the intervention condition based on the presence of a specialized palliative care team. The study population consists of patients with COPD and their main informal caregivers. Patients will be included during hospitalization for an acute exacerbation. All patients in the study receive standard care (usual care). Besides, patients in the intervention condition who meet two or more criteria of the set of indicators for proactive palliative care will have additionally regular consultations with a specialized palliative care team. The objectives of the PROLONG study are: 1) to assess the discriminating power of the proposed set of indicators (indicator study) and 2) to assess the effects of proactive palliative care for qualifying patients with COPD on the wellbeing of these patients and their informal caregivers (intervention study). The primary outcome measure of the indicator study is time to death for any cause. The primary outcome measure of the intervention study is the change in quality of life measured by the St. George Respiratory Questionnaire (SGRQ) three months after inclusion. Discussion: The PROLONG study may lead to better understanding of the conditions to start and the effectiveness of proactive palliative care for patients with COPD. Innovative aspects of the PROLONG study are the use of a set of indicators for proactive palliative care, the active involvement of a specialized palliative care team and the use of a patient-tailored proactive palliative care plan. [ABSTRACT FROM AUTHOR]
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- 2014
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28. Comparison of legislation, regulations and national health strategies for palliative care in seven European countries (Results from the Europall Research Group): a descriptive study.
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Van Beek, Karen, Woitha, Kathrin, Ahmed, Nisar, Menten, Johan, Jaspers, Birgit, Engels, Yvonne, Ahmedzai, Sam H., Vissers, Kris, and Hasselaar, Jeroen
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Background: According to EU policy, anyone in need of palliative care should be able to have access to it. It is therefore important to investigate which palliative care topics are subject to legislation and regulations in Europe and how these are implemented in (national) health care plans. This paper aims to deliver a structured overview of the legislation, existing regulations and the different health care policies regarding palliative care in seven European countries. Methods: In 2008 an inventory of the organisation of palliative care was developed by the researchers of the Europall project. Included were two open questions about legislation, regulations, and health policy in palliative care. This questionnaire was completed using palliative care experts selected from Belgium, England, France, Germany, the Netherlands, Poland and Spain. Additionally, (grey) literature on palliative care health policy and regulations from the participating countries was collected to complete the inventory. Comparative analysis of country specific information was performed afterwards. Results: In all countries palliative care regulations and policies existed (either in laws, royal decrees, or national policies). An explicit right to palliative care was mentioned in the Belgium, French and German law. In addition, access to palliative care was mentioned by all countries, varying from explicit regulations to policy intentions in national plans. Also, all countries had a national policy on palliative care, although sometimes mainly related to national cancer plans. Differences existed in policy regarding palliative care leave, advance directives, national funding, palliative care training, research, opioids and the role of volunteers. Conclusions: Although all included European countries have policies on palliative care, countries largely differ in the presence of legislation and regulations on palliative care as well as the included topics. European healthcare policy recommendations should support palliative care access across Europe. [ABSTRACT FROM AUTHOR]
- Published
- 2013
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29. Modelling the landscape of palliative care for people with dementia: a European mixed methods study.
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Iliffe, Steve, Davies, Nathan, Vernooij-Dassen, Myrra, van Riet Paap, Jasper, Sommerbakk, Ragni, Mariani, Elena, Jaspers, Birgit, Radbruch, Lukas, Manthorpe, Jill, Maio, Laura, Haugen, Dagny, and Engels, Yvonne
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TREATMENT of dementia ,MEDICAL care ,INTERVIEWING ,MATHEMATICAL models ,RESEARCH methodology ,PALLIATIVE treatment ,QUALITY assurance ,RESEARCH funding ,THEORY - Abstract
Background: Palliative care for people with dementia is often sub-optimal. This is partly because of the challenging nature of dementia itself, and partly because of system failings that are particularly salient in primary care and community services. There is a need to systematize palliative care for people with dementia, to clarify where changes in practice could be made. To develop a model of palliative care for people with dementia that captures commonalities and differences across Europe, a technology development approach was adopted, using mixed methods including 1) critical synthesis of the research literature and policy documents, 2) interviews with national experts in policy, service organisation, service delivery, patient and carer interests, and research in palliative care, and 3) nominal groups of researchers tasked with synthesising data and modelling palliative care. Discussion: A generic model of palliative care, into which quality indicators can be embedded. The proposed model includes features deemed important for the systematisation of palliative care for people with dementia. These are: the division of labour amongst practitioners of different disciplines; the structure and function of care planning; the management of rising risk and increasing complexity; boundaries between disease-modifying treatment and palliative care and between palliative and end-of-life care; and the process of bereavement. Summary: The co-design approach to developing a generic model of palliative care for people with dementia has placed the person needing palliative care within a landscape of services and professional disciplines. This model will be explored further in the intervention phase of the IMPACT project. [ABSTRACT FROM AUTHOR]
- Published
- 2013
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30. How do GPs identify a need for palliative care in their patients? An interview study.
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Claessen, Susanne J. J., Francke, Anneke L., Engels, Yvonne, and Deliens, Luc
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TUMOR treatment ,INTERVIEWING ,MEDICAL needs assessment ,PALLIATIVE treatment ,GENERAL practitioners ,RESEARCH funding ,QUALITATIVE research ,NARRATIVES ,DATA analysis software - Abstract
Background: Little is known about how GPs determine whether and when patients need palliative care. Little research has been done regarding the assumption underpinning Lynn and Adamson's model that palliative care may start early in the course of the disease. This study was conducted to explore how GPs identify a need for palliative care in patients. Methods: A qualitative interview study was performed among 20 GPs in the Netherlands. Results: GPs reported that a combination of several signals, often subtle and not explicit, made them identify a need for palliative care: signals from patients (increasing care dependency and not recuperating after intercurrent diseases) and signals from relatives or reports from medical specialists. GPs reported differences in how they identified a need for palliative care in cancer patients versus those with other diseases. In cancer patients, the need for palliative care was often relatively clear because of a relatively strict demarcation between the curative and palliative phase. However, in patients with e.g. COPD or in the very old, GPs' awareness of palliative care needs often arises gradually, relatively late in the disease trajectory. GPs consider the diagnosis of a life-threatening illness as a key point in the disease trajectory. However, this does not automatically mean that a patient needs palliative care at that point. Conclusions: GPs recognize a need for palliative care on the basis of various signals. They do not support the idea underlying Lynn and Adamson's model that palliative care always starts early in the course of the disease. [ABSTRACT FROM AUTHOR]
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- 2013
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31. Development of a set of process and structure indicators for palliative care: the Europall project.
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Woitha, Kathrin, Van Beek, Karen, Ahmed, Nisar, Hasselaar, Jeroen, Mollard, Jean-Marc, Colombet, Isabelle, Radbruch, Lukas, Vissers, Kris, and Engels, Yvonne
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PALLIATIVE treatment ,THERAPEUTICS ,MEDICAL care for older people ,HOSPICE care ,TERMINAL care - Abstract
Background: By measuring the quality of the organisation of palliative care with process and structure quality indicators (QIs), patients, caregivers and policy makers are able to monitor to what extent recommendations are met, like those of the council of the WHO on palliative care and guidelines. This will support the implementation of public programmes, and will enable comparisons between organisations or countries. Methods: As no European set of indicators for the organisation of palliative care existed, such a set of QIs was developed. An update of a previous systematic review was made and extended with more databases and grey literature. In two project meetings with practitioners and experts in palliative care the development process of a QI set was finalised and the QIs were categorized in a framework, covering the recommendations of the Council of Europe. Results: The searches resulted in 151 structure and process indicators, which were discussed in steering group meetings. Of those QIs, 110 were eligible for the final framework. Conclusions: We developed the first set of QIs for the organisation of palliative care. This article is the first step in a multi step project to identify, validate and pilot QIs. [ABSTRACT FROM AUTHOR]
- Published
- 2012
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32. Decreased costs and retained QoL due to the 'PACE Steps to Success' intervention in LTCFs: cost-effectiveness analysis of a randomized controlled trial.
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Wichmann, Anne B., Adang, Eddy M. M., Vissers, Kris C. P., Szczerbińska, Katarzyna, Kylänen, Marika, Payne, Sheila, Gambassi, Giovanni, Onwuteaka-Philipsen, Bregje D., Smets, Tinne, Van den Block, Lieve, Deliens, Luc, Vernooij-Dassen, Myrra J. F. J., Engels, Yvonne, on behalf of the PACE trial group, Andreasen, Paula, Barańska, Ilona, Bassal, Catherine, Moore, Danni Collingridge, Finne-Soveri, Harriet, and Froggatt, Katherine
- Subjects
RANDOMIZED controlled trials ,LONG-term care facilities ,DEATH rate ,COST control ,PALLIATIVE treatment - 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 . [ABSTRACT FROM AUTHOR]- Published
- 2020
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33. Living at the end-of-life: experience of time of patients with cancer.
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Rovers, Jordy Johannes Eduardus, Knol, Elze Jantien, Pieksma, Jelte, Nienhuis, Wytse, Wichmann, Anne Barbara, and Engels, Yvonne
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CANCER patient medical care ,CANCER patient psychology ,COST effectiveness ,HEALTH status indicators ,HOSPICE care ,INTERVIEWING ,RESEARCH methodology ,MEDICAL care costs ,HEALTH policy ,MEDICAL practice ,PALLIATIVE treatment ,PSYCHOLOGY of the terminally ill ,TIME ,ACTIVITIES of daily living ,QUALITY-adjusted life years - 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. [ABSTRACT FROM AUTHOR]
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- 2019
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34. Advance care planning conversations with palliative patients: looking through the GP's eyes.
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Wichmann, Anne B., van Dam, Hanna, Thoonsen, Bregje, Boer, Theo A., Engels, Yvonne, and Groenewoud, A. Stef
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ANXIETY ,CONTENT analysis ,HEALTH care teams ,HEALTH facilities ,HEART failure ,INTERVIEWING ,OBSTRUCTIVE lung diseases ,PALLIATIVE treatment ,PHYSICIAN-patient relations ,PHYSICIANS ,GENERAL practitioners ,ADVANCE directives (Medical care) ,OCCUPATIONAL roles ,PATIENT autonomy ,PSYCHOLOGY - 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. [ABSTRACT FROM AUTHOR]
- Published
- 2018
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35. Improving the organization of palliative care: identification of barriers and facilitators in five European countries.
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van Riet Paap, Jasper, Vernooij-Dassen, Myrra, Brouwer, Frederike, Meiland, Franka, Iliffe, Steve, Davies, Nathan, Leppert, Wojciech, Jaspers, Birgit, Mariani, Elena, Sommerbakk, Ragni, Vissers, Kris, Engels, Yvonne, and IMPACT research team
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- 2014
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36. Comparison of legislation, regulations and national health strategies for palliative care in seven European countries (Results from the Europall Research Group): a descriptive study.
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Beek, Karen Van, Woitha, Kathrin, Ahmed, Nisar, Menten, Johan, Jaspers, Birgit, Engels, Yvonne, Ahmedzai, Sam H, Vissers, Kris, Hasselaar, Jeroen, and Van Beek, Karen
- Abstract
Background: According to EU policy, anyone in need of palliative care should be able to have access to it. It is therefore important to investigate which palliative care topics are subject to legislation and regulations in Europe and how these are implemented in (national) health care plans. This paper aims to deliver a structured overview of the legislation, existing regulations and the different health care policies regarding palliative care in seven European countries.Methods: In 2008 an inventory of the organisation of palliative care was developed by the researchers of the Europall project. Included were two open questions about legislation, regulations, and health policy in palliative care. This questionnaire was completed using palliative care experts selected from Belgium, England, France, Germany, the Netherlands, Poland and Spain. Additionally, (grey) literature on palliative care health policy and regulations from the participating countries was collected to complete the inventory. Comparative analysis of country specific information was performed afterwards.Results: In all countries palliative care regulations and policies existed (either in laws, royal decrees, or national policies). An explicit right to palliative care was mentioned in the Belgium, French and German law. In addition, access to palliative care was mentioned by all countries, varying from explicit regulations to policy intentions in national plans. Also, all countries had a national policy on palliative care, although sometimes mainly related to national cancer plans. Differences existed in policy regarding palliative care leave, advance directives, national funding, palliative care training, research, opioids and the role of volunteers.Conclusions: Although all included European countries have policies on palliative care, countries largely differ in the presence of legislation and regulations on palliative care as well as the included topics. European healthcare policy recommendations should support palliative care access across Europe. [ABSTRACT FROM AUTHOR]- Published
- 2013
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37. Rationale, design, and implementation protocol of the Dutch clinical practice guideline pain in patients with cancer: a cluster randomised controlled trial with Short Message Service (SMS) and Interactive Voice Response (IVR).
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te Boveldt, Nienke, Engels, Yvonne, Besse, Kees, Vissers, Kris, and Vernooij-Dassen, Myrra
- Abstract
Background: One-half of patients with cancer have pain. In nearly one out of two cancer patients with pain, this was undertreated. Inadequate pain control still remains an important problem in this group of patients. Therefore, in 2008 a national, evidence-based multidisciplinary clinical practice guideline 'pain in patients with cancer' has been developed. Yet, publishing a guideline is not enough. Implementation is needed to improve pain management. An innovative implementation strategy, Short Message Service with Interactive Voice Response (SVS-IVR), has been developed and pilot tested. This study aims to evaluate on effectiveness of this strategy to improve pain reporting, pain measurement and adequate pain therapy. In addition, whether the active role of the patient and involvement of caregivers in pain management may change.Methods/design: A cluster randomised controlled trial with two arms will be performed in six oncology outpatient clinics of hospitals in the Southeastern region of the Netherlands, with three hospitals in the intervention and three in the control condition. Follow-up measurements will be conducted in all hospitals to study the long-term effect of the intervention. The intervention includes training of professionals (medical oncologists, nurses, and general practitioners) and SMS-IVR to report pain in patients with cancer to improve pain reporting by patients, pain management by medical oncologists, nurses, and general practitioners, and decrease pain intensity.Discussion: This innovative implementation strategy with technical tools and the involvement of patients, may enhance the use of the guideline 'pain in patients with cancer' for pain management. Short Message Service alerts may serve as a tool to support self-management of patients. Therefore, the SMS-IVR intervention may increase the feeling of having control over one's life.Trial Registration: [corrected] Netherlands Trial Register (NTR): NTR2739. [ABSTRACT FROM AUTHOR]- Published
- 2011
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38. Evaluating the implementation of the PACE Steps to Success Programme in long-term care facilities in seven countries according to the RE-AIM framework.
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Oosterveld-Vlug M, Onwuteaka-Philipsen B, Ten Koppel M, van Hout H, Smets T, Pivodic L, Tanghe M, Van Den Noortgate N, Hockley J, Payne S, Moore DC, Kijowska V, Szczerbińska K, Kylänen M, Leppäaho S, Mercuri C, Rossi P, Mercuri M, Gambassi G, Bassal C, de Paula EM, Engels Y, Deliens L, Van den Block L, and Pasman HR
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- Cluster Analysis, Europe, Humans, Long-Term Care, Health Plan Implementation methods, Nursing Homes standards, Palliative Care methods, Process Assessment, Health Care methods, Program Evaluation methods, Quality Improvement
- Abstract
Background: The PACE 'Steps to Success' programme is a complex educational and development intervention for staff to improve palliative care in long-term care facilities (LTCFs). In a cluster randomized controlled trial, this programme has been implemented in 37 LTCFs in 7 European countries. Alongside an effectiveness study, a process evaluation study was conducted. This paper reports on the results of this process evaluation, of which the aim was to provide a more detailed understanding of the implementation of the PACE Programme across and within countries., Methods: The process evaluation followed the Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework and involved various measures and tools, including diaries for country trainers, evaluation questionnaires for care staff, attendance lists and interviews (online and face-to-face, individual and in groups) with country trainers, managers, PACE coordinators and other staff members. Based on key elements of the PACE Programme, a priori criteria for a high, medium and low level of the RE-AIM components Reach, Adoption, Implementation and intention to Maintenance were defined. Qualitative data on factors affecting each RE-AIM component gathered in the online discussion groups and interviews were analysed according to the principles of thematic analysis., Results: The performance of the PACE Programme on the RE-AIM components was highly variable within and across countries, with a high or medium score for in total 28 (out of 37) LTCFs on Reach, for 26 LTCFs on Adoption, for 35 LTCFs on Implementation and for 34 LTCFs on intention to Maintenance. The factors affecting performance on the different RE-AIM components could be classified into three major categories: (1) the PACE Programme itself and its way of delivery, (2) people working with the PACE Programme and (3) contextual factors. Several country-specific challenges in implementing the PACE Programme were identified., Conclusions: The implementation of the PACE Programme was feasible but leaves room for improvement. Our analysis helps to better understand the optimal levels of training and facilitation and provides recommendations to improve implementation in the LTC setting. The results of the process evaluation will be used to further adapt and improve the PACE Programme prior to its further dissemination., Trial Registration: The PACE study was registered at www.isrctn.com-ISRCTN14741671 (FP7-HEALTH-2013-INNOVATION-1 603111) July 30, 2015.
- Published
- 2019
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39. Identification of the palliative phase in people with dementia: a variety of opinions between healthcare professionals.
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van Riet Paap J, Mariani E, Chattat R, Koopmans R, Kerhervé H, Leppert W, Forycka M, Radbruch L, Jaspers B, Vissers K, Vernooij-Dassen M, and Engels Y
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- Attitude of Health Personnel, Consensus, Dementia therapy, Europe, Humans, Dementia classification, Health Personnel psychology, Long-Term Care methods, Palliative Care, Patient Care classification
- Abstract
Background: People with dementia can benefit from a palliative care approach. Recommendations, such as those of the EAPC have been proposed to strengthen the provision of palliative care for this group of patients. Yet, it remains challenging for professionals to identify when a person with dementia is in need of palliative care. The objective of this study therefore was to explore when professionals in long-term care settings consider a person with dementia in need of palliative care., Methods: Teams with in total 84 professionals working in 13 long-term care settings from 6 countries (France, Germany, Italy, Norway, Poland and the Netherlands) received a case-vignette concerning a person with dementia recently admitted to a nursing home. Teams were asked to discuss when they considered people with dementia eligible for palliative care. The constant comparative method was used to analyse their answers., Results: Three different time points in the disease trajectory when people with dementia were considered to be eligible for palliative care were extracted: (1) early in the disease trajectory; (2) when signs and symptoms of advanced dementia are present; and (3) from the time point that curative treatment of co-morbidities is futile. Yet, none of these time points was uniformly considered by the professional teams across Europe. In some cases, professionals working in the same nursing home didn't even reach consensus when considering persons with dementia eligible for palliative care., Conclusion: The results of the study identified that professionals across Europe have different opinions regarding the time point when to consider a person with dementia in need of palliative care.
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- 2015
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40. Early identification of and proactive palliative care for patients in general practice, incentive and methods of a randomized controlled trial.
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Thoonsen B, Groot M, Engels Y, Prins J, Verhagen S, Galesloot C, van Weel C, and Vissers K
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- Female, General Practice, General Practitioners standards, Heart Failure psychology, Heart Failure therapy, Humans, Male, Middle Aged, Neoplasms psychology, Neoplasms therapy, Netherlands, Pain Measurement methods, Pain Measurement standards, Palliative Care organization & administration, Palliative Care standards, Pulmonary Disease, Chronic Obstructive psychology, Pulmonary Disease, Chronic Obstructive therapy, Severity of Illness Index, Time Factors, Caregivers psychology, General Practitioners education, Palliative Care methods, Quality of Life, Terminally Ill psychology
- Abstract
Background: According to the Word Health Organization, patients who can benefit from palliative care should be identified earlier to enable proactive palliative care. Up to now, this is not common practice and has hardly been addressed in scientific literature. Still, palliative care is limited to the terminal phase and restricted to patients with cancer. Therefore, we trained general practitioners (GPs) in identifying palliative patients in an earlier phase of their disease trajectory and in delivering structured proactive palliative care. The aim of our study is to determine if this training, in combination with consulting an expert in palliative care regarding each palliative patient's tailored care plan, can improve different aspects of the quality of the remaining life of patients with severe chronic diseases such as chronic obstructive pulmonary disease, congestive heart failure and cancer., Methods/design: A two-armed randomized controlled trial was performed. As outcome variables we studied: place of death, number of hospital admissions and number of GP out of hours contacts., Discussion: We expect that this study will increase the number of identified palliative care patients and improve different aspects of quality of palliative care. This is of importance to improve palliative care for patients with COPD, CHF and cancer and their informal caregivers, and to empower the GP. The study protocol is described and possible strengths and weaknesses and possible consequences have been outlined., Trial Registration: The Netherlands National Trial Register: NTR2815.
- Published
- 2011
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