Advance care planning – a multi-centre cluster randomised clinical trial: the research protocol of the ACTION study View Full Text


Ontology type: schema:ScholarlyArticle      Open Access: True


Article Info

DATE

2016-12

AUTHORS

Judith A. C. Rietjens, Ida J. Korfage, Lesley Dunleavy, Nancy J. Preston, Lea J. Jabbarian, Caroline Arnfeldt Christensen, Maja de Brito, Francesco Bulli, Glenys Caswell, Branka Červ, Johannes van Delden, Luc Deliens, Giuseppe Gorini, Mogens Groenvold, Dirk Houttekier, Francesca Ingravallo, Marijke C. Kars, Urška Lunder, Guido Miccinesi, Alenka Mimić, Eugenio Paci, Sheila Payne, Suzanne Polinder, Kristian Pollock, Jane Seymour, Anja Simonič, Anna Thit Johnsen, Mariëtte N. Verkissen, Esther de Vries, Andrew Wilcock, Marieke Zwakman, Agnes van der Heide (Pl)

ABSTRACT

BACKGROUND: Awareness of preferences regarding medical care should be a central component of the care of patients with advanced cancer. Open communication can facilitate this but can occur in an ad hoc or variable manner. Advance care planning (ACP) is a formalized process of communication between patients, relatives and professional caregivers about patients' values and care preferences. It raises awareness of the need to anticipate possible future deterioration of health. ACP has the potential to improve current and future healthcare decision-making, provide patients with a sense of control, and improve their quality of life. METHODS/DESIGN: We will study the effects of the ACP program Respecting Choices on the quality of life of patients with advanced lung or colorectal cancer. In a phase III multicenter cluster randomised controlled trial, 22 hospitals in 6 countries will be randomised. In the intervention sites, patients will be offered interviews with a trained facilitator. In the control sites, patients will receive care as usual. In total, 1360 patients will be included. All participating patients will be asked to complete questionnaires at inclusion, and again after 2.5 and 4.5 months. If a patient dies within a year after inclusion, a relative will be asked to complete a questionnaire on end-of-life care. Use of medical care will be assessed by checking medical files. The primary endpoint is patients' quality of life at 2.5 months post-inclusion. Secondary endpoints are the extent to which care as received is aligned with patients' preferences, patients' evaluation of decision-making processes, quality of end-of-life care and cost-effectiveness of the intervention. A complementary qualitative study will be carried out to explore the lived experience of engagement with the Respecting Choices program from the perspectives of patients, their Personal Representatives, healthcare providers and facilitators. DISCUSSION: Transferring the concept of ACP from care of the elderly to patients with advanced cancer, who on average are younger and retain their mental capacity for a larger part of their disease trajectory, is an important next step in an era of increased focus on patient centered healthcare and shared decision-making. TRIAL REGISTRATION: International Standard Randomised Controlled Trial Number: ISRCTN63110516. Date of registration: 10/3/2014. More... »

PAGES

264

References to SciGraph publications

Identifiers

URI

http://scigraph.springernature.com/pub.10.1186/s12885-016-2298-x

DOI

http://dx.doi.org/10.1186/s12885-016-2298-x

DIMENSIONS

https://app.dimensions.ai/details/publication/pub.1020216132

PUBMED

https://www.ncbi.nlm.nih.gov/pubmed/27059593


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452 https://www.grid.ac/institutes/grid.412388.4 schema:alternateName University Clinic of Pulmonary and Allergic Diseases Golnik
453 schema:name University Clinic for Respiratory and Allergic Diseases Golnik, Golnik, Slovenia
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455 https://www.grid.ac/institutes/grid.429138.5 schema:alternateName Italian Association for Cancer Research
456 schema:name Clinical and Descriptive Epidemiology Unit, ISPO Cancer Prevention and Research Institute, Florence, Italy
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458 https://www.grid.ac/institutes/grid.5254.6 schema:alternateName University of Copenhagen
459 schema:name Department of Public Health, University of Copenhagen, Øster Farimagsgade 5, 1014, København, Denmark
460 The Research Unit, Department of Palliative Medicine, Bispebjerg / Frederiksberg Hospital, Bispebjerg Bakke 23, 2400, København, NV, Denmark
461 rdf:type schema:Organization
462 https://www.grid.ac/institutes/grid.5645.2 schema:alternateName Erasmus University Medical Center
463 schema:name Department of Public Health, Erasmus University Medical Center, Rotterdam, The Netherlands
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465 https://www.grid.ac/institutes/grid.6292.f schema:alternateName University of Bologna
466 schema:name Department of Medical and Surgical Sciences, University of Bologna, Bologna, Italy
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468 https://www.grid.ac/institutes/grid.7692.a schema:alternateName University Medical Center Utrecht
469 schema:name Julius Center for Health Sciences and Primary Care, Medical School of Utrecht University, Utrecht, The Netherlands
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471 https://www.grid.ac/institutes/grid.9835.7 schema:alternateName Lancaster University
472 schema:name International Observatory on the End-of-Life Care, Lancaster University, LA1 4YG, Lancaster, UK
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