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Dear Healthcare Professional

For the research project SERENITY – “Towards Cancer Patient Empowerment for Optimal Use of Antithrombotic Therapy at the End of Life”, funded by the European Commission’s HORIZON programme, we are seeking the input of healthcare professionals involved in the end-of-life care of cancer patients.

If you are a general practitioner, oncologist, haematologist, palliative care specialist, nursing home physician, geriatrist, neurologist, vascular medicine specialist, vascular surgeon, cardiologist or healthcare professional of any other specialty involved in the end-of-life care of cancer patients, we would like to invite you to participate in a survey on the management of antithrombotic therapy during the end-of-life care of cancer patients.

The survey will be conducted and overseen by the Center for Thrombosis and Hemostasis (CTH) at the University Medical Center Mainz (UMCM).

If you are interested in participating in the survey, we ask you to pre-register at SERENITY Physician Survey - Pre-registration.

In case of questions, please do not hesitate to contact us:

 Prof Stavros Konstantinides (survey lead) 

 Dr Dorothea Becker (project management)

For more information on SERENITY, please also visit serenity-research.eu.

The tabs below outline SERENITY and what to expect if you choose to take the survey.

Deprescribing (i.e., discontinuing medication) is an important part of palliative care to prevent polypharmacy, which is associated, among others, with an increased risk of adverse drug reactions, drug-drug and drug-disease interactions, reduced functional capacity, medication nonadherence, and higher healthcare costs. One of the most widely used cardiovascular drug classes in cancer patients are anticoagulants and so-called antiplatelet agents, including direct oral anticoagulants, low-molecular-weight heparins, vitamin K antagonists and antiplatelet agents. Some patients have been receiving these drugs before their cancer was diagnosed, others in order to treat or prevent cancer-related thrombosis. Decisions on deprescribing antithrombotics heavily depend on the indication of the antithrombotic drug, the healthcare professional’s experience as well as the patient’s preference and estimated life expectancy.

So far, however, there is no comprehensive information or guidance that would support healthcare professionals in discussing the issue with their patients and ultimately finding the best personalised solution.

The multinational SERENITY project, funded under the EU HORIZON Research and Innovation initiative (project no. 101057292), aims to develop an information-driven, palliative care shared decision-making process enabled by an easily accessible, web-based shared-decision support tool. The intended tool is meant to facilitate treatment decisions on the appropriate use of antithrombotic therapy in cancer patients at the end of life and it will be designed to be patient-specific in terms of age, sex, type of cancer as well as cultural and socioeconomic factors.

SERENITY takes a comprehensive approach using a combination of methodologies, including the flash mob-design survey presented here, epidemiologic studies, qualitative interviews and a randomised controlled trial.

Understanding current patterns of management of antithrombotic therapy as well as the rationale and preferences behind these patterns is crucial for improving clinical practice. Since deprescribing patterns and rationale may differ across Europe, relevant data at a large scale is needed to fully understand and appreciate the relevant decision-making processes.

SERENITY aims to collect comprehensive data on current practice patterns through a survey among healthcare professionals. Our goal is to enrol at least 800 healthcare professionals from the 8 European countries involved in SERENITY (Denmark, France, Germany, Italy, The Netherlands, Poland, Spain, United Kingdom) and beyond.

We would be very happy and grateful to count you among them!

The objective of this survey is to explore and describe current European practice patterns with regard to the use of antithrombotic therapy in the end-of-life care of cancer patients by use of the flash mob research methodology. Flash mob research is a method that enables large-scale investigation of clinically relevant issues in a short amount of time.

Furthermore, this study aims to evaluate and understand the processes and factors that inform decisions concerning the discontinuation of antithrombotic therapy in cancer patients.

The insights to be gained in this survey are a first step towards the development of the intended clinical decision tool supporting decisions on antithrombotic therapy in cancer patients.

The study will be conducted as an electronic survey using the Castor electronic data capture platform (https://www.castoredc.com/) and it will be divided into the following sections:

a)    General questions regarding end-of-life care (e.g., “When do you consider a patient in end-of-life care?”) and (de)prescription of antithrombotic medication to cancer patients during end-of-life care (e.g., “Have you ever considered deprescribing antithrombotic medicine?”).

b)    A sequence of choice scenarios (Discrete Choice Experiments) i.e., hypothetical scenarios that vary with regard to several characteristics (“attributes”; e.g., bleeding risk, thrombotic risk), which are considered relevant for the decision on continuation or stopping antithrombotic medication in the patient population studied. You will be asked to choose the healthcare intervention that in your opinion would benefit the patient the most.

c)    Multiple-choice questions on actual case decisions you made (if any) in a maximum of three consecutive cases involving patients with active cancer, who were considered to receive end-of-life care. Only fully anonymised data of these patients will be collected. As an additional security measure, this part of the survey will be exported and analysed separately from the above sections.

Completion of sections a and b will take you a maximum of 10 minutes.

Please note, that due to its flash mob nature, the survey will be open for data entry for 7 days only.

If you are interested in participating in the survey, we ask you to pre-register at SERENITY Physician Survey - Pre-registration.

During pre-registration, we will ask you for some demographic and professional information. Specifically, we will ask you to indicate the country in which you are practicing, your age (one of several age categories to be selected), sex, medical specialty, the number of years of experience (one of several experience groups to be selected) and the (approximate) number of palliative care patients you are seeing or treating each year. This information is captured to ensure gender balance and equal distribution of experienced versus less experienced participants.

Once pre-registration is closed and shortly before the survey is launched in May 2023, we will notify you of the exact launch date by e-mail. Additionally, you will receive an e-mail with a unique link to the survey hosted on the Castor electronic data capture platform.

In order to notify you of the survey launch, we need to process the following personal data from you (Art. 4 No. 1 GDPR):

  • Your e-mail address (and your name, if included in the e-mail address)

The legal basis for the processing of this data is your informed consent in accordance with Article 6 (1) (a) GDPR. By pre-registering at SERENITY Physician Survey - Pre-registration, you consent to the use of your above data as part of the survey described here. Your participation in the survey is voluntary and your pre-registration does not oblige you to take the survey.

The responsibility for the processing of your personal data lies with:

 

University Medical Center of the Johannes Gutenberg University Mainz (UMCM) represented by the Executive Board

Langenbeckstrasse 1, 55131 Mainz, Germany | Telephone: +49 (0)6131 17-0

Website: www.unimedizin-mainz.de

 

Contact details of the UMCM data protection officer are as follows:

Langenbeckstrasse 1 | 55131 Mainz | Phone: +49 (0)6131/17-0

Email: datenschutz@unimedizin-mainz.de

 

Your personal data will not be passed on outside of UMCM.

With regard to your personal data, you can request information (Art. 15 GDPR), correction (Art. 16 GDPR), deletion (Art. 17 GDPR) and restriction of processing (Art. 18 GDPR) at any time. You also have the right to object under Section 21 (6) GDPR. You can also revoke your consent at any time. A revocation does not affect the legality of processing in the past, but only has an effect on future data processing. Your personal data will be deleted after the end of the data collection period or if you withdraw your consent. Your personal data will not be subject to decisions based solely on automated processing.

You have the right to lodge a complaint with a supervisory authority at any time. The competent supervisory authority for the University Medical Center Mainz is the State Commissioner for Data Protection and Freedom of Information of Rhineland-Palatinate, Germany:

PO Box 30 40, 55020 Mainz | Hintere Bleiche 34, 55116 Mainz, Germany

Phone: +49 (0) 6131 208-2449 | Fax: +49 (0) 6131 208-2497

Email: poststelle@datenschutz.rlp.de

www.datenschutz.rlp.de

According to current legislation on the archival of research data, data collected for this survey will be stored on secure servers within the European union for a minimum of 15 years.

We will notify you of survey completion. Survey results and any scientific publication thereof will be posted on the SERENITY webpage at serenity-research.eu.   

If you have any questions or would like to assert your rights as a data subject, please do not hesitate to contact us at  Dorothea.Becker@unimedizin-mainz.de.