Welcome to the newsletter of the ACTION study.
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ACTION is a multinational study on the effect of advance care planning on quality of life of patients with end stage cancer.

Advance cancer seriously affects the quality of life of patients. Open and respectful communication about patients' wishes for end of life care and treatment is important. However, discussing these wishes may be hard for healthcare professionals as well as for patients and relatives themselves. Advance care planning may support patients in making their wishes known and followed.

You can find more information about our study on our website. Please click the button below.
ACTION Website
Welcome to the first newsletter of the ACTION project!

We are happy to send you some news about the ACTION project, a European cluster-randomized study on advance care planning in patients with advanced lung or colorectal cancer. ACTION is a consortium of 8 research teams from six European countries (Belgium, Denmark, Italy, the Netherlands, Slovenia, and the United Kingdom).

In 22 hospitals we collaborate with healthcare professionals, including 45 facilitators and many more physicians, nurses, and psychologists, to see whether advance care planning contributes to the quality of life of patients and their family. ACTION is funded by the EU FP7 program.

In this first newsletter we introduce three ACTION teams and describe their work in preparing the intervention study. In future newsletters we will keep you updated about the study progress and introduce the five other teams. 

On behalf of the ACTION consortium,

Agnes van der Heide, Judith Rietjens, Ida Korfage
May we introduce:
Team Denmark: Mogens Grønvold, Anna Thit Johnsen and Caroline Arnfeldt Christensen

Our main task has been to take care of the feasibility testing of the ACP intervention as well as the translation of questionnaires following the procedures of the EORTC Quality of Life Group. An extensive pilot study of the intervention was performed. As a result of the work carried out, the intervention as well as the intervention materials and the questionnaires were ready to be applied in the ACTION trial. 
Team Lancaster: Sheila Payne, Nancy Preston, Lesley Dunleavy and Anthony Greenwood

We refined and completed the study protocol and guided the team to obtaining research ethical approval. We gathered reports of each participating hopsital. We also established the project website
Team Slovenia: Urška Lunder, Branka Červ, Alenka Mimić, Polona Ozbič, Anja Simonič and Maja de Brito

Our task was to monitor the advance care planning education process. Representatives from each partner were first trained in La Crosse, WI (United States). Afterwards we developed a training curriculum and translated the intervention for the European context. In a second step, ACP facilitators were trained in each country. At the moment we are monitoring the performance of the facilitators.

February 2016:
We are working on the final touches of the medical file checklist and the qualitative study.

January 2016:
The ACTION team wishes everybody a happy new year!
Stay up to date through twitter and follow us @ACPinscience

July 2015:
We have started the exciting phase of including patients in our trial. 

March 2015:
We have trained teams of facilitators extensively, who are very motivated to deliver the intervention. 

February 2015:
We translated the Respecting Choices documents and adapted them to the varying cultural contexts of the six countries, while maintaining their essential core and comparability. 

We also developed the so-called My Preferences form, an advance directive specifically for the purpose of our study, which is ethically, legally and socially acceptable in the participating countries. 

June 2014:
We developed and translated questionnaires and patient information materials and gained ethical approval for this study in all participating countries. 

December 2013:
Official start of the ACTION study. The project will continue until the end of 2018. 
Advance care planning in oncology in Europe
The ACTION team contributes regularly to the blog of the European Association for Palliative Care. Read the first blog entry on the background of the ACTION study here

Read the second blog entry on "From 'death talks' to advance care planning?" about a vigorous debate in the Danish media here
ACTION consortium meeting in Bled
The third consortium meeting was held in Bled, Slovenia on the 5th and 6th of October.
Besides the consortium meeting the teachers met to discuss the intervention and supervision of the facilitators.

ACTION consortium meeting in Manchester
Representatives of all Work Packages attended the annual ACTION consortium meeting in Manchester, UK, between the 6th and 8th October 2014.

The UK team was kind enough to arrange typical English weather for the occassion but this did not detract from an excellent meeting, with many topics covered during the 2-day event, followed by a further 'Respecting Choices' training day.
ACTION members follow "Respecting Choices training
In May 2014 ACTION members were trained in La Crosse, Wisconsin/ USA by staff from Gunderson to become certified facilitators for "Respecting Choices". The visit reached local news. Watch the clip about how Gundersen's "Respecting Choices" program goes global. 
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Lea Jabbarian

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Lea Jabbarian · · Rotterdam, 3015 · Netherlands

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