ESTRO 2023

Session Item

Sunday

May 14

15:15 - 16:15

Stolz 2

Patient and public perspective

Chair: , Ireland;

Chair: Sairanne Wickers, United Kingdom

Session Type: Mini-Oral

Track: Interdisciplinary

Journey:

Defining Patient Empowerment from a radiation oncology perspective: An Expert and patient consensus

Mohamed Schumann, Germany

Presentation Number: MO-0561

Abstract

Abstract Title:

Defining Patient Empowerment from a radiation oncology perspective: An Expert and patient consensus

Authors:

Mohamed Shouman¹, Serap Tari², Friederike Mumm³, Morten Hoyer⁴, Jesper Grau Eriksen⁵, Cecile Le Péchoux⁶, Anne Laprie⁷, David Krug⁸, Umberto Ricardi⁹, Vincenzo Valentini¹⁰, Barbara Alicja Jereczek-Fossa^11,12, Icro Meattini¹³, Mirjam Mast¹⁴, Ben Slotman¹⁵, Bradley R Pieters¹⁵, Laura Motisi¹⁶, Agata Rembielak¹⁷, Anna M Kirby¹⁸, Carsten Nieder¹⁹, Carl Salembier²⁰, Sławomir Blamek²¹, Pedro C Lara²², Felipe Couñago²³, Yolande Lievens²⁴, Piet Ost²⁵, Renée Bultijnck²⁶, Katja Kuehlmeyer²⁷, Fiona McDonald²⁸, Pierre Blanchard²⁹, Matthias Guckenberger¹⁶, Claus Belka¹

¹University Hospital, LMU München, Department of Radiation Oncology, Munich, Germany; ²Comprehensive Cancer Center Munich (CCC Munich LMU), Lebensmut e.V., Munich, Germany; ³University Hospital, LMU Munich, Department of Internal Medicine III, Munich, Germany; ⁴Aarhus University, Danish Center for Particle Therapy, Aarhus, Denmark; ⁵Aarhus University Hospital, Aarhus, Department of Experimental Clinical Oncology, Aarhus, Denmark; ⁶Gustave Roussy Cancer Campus, Department of Radiation Oncology, Villejuif, France; ⁷Claudius Regaud Institute, Toulouse University Cancer Institute-Oncopole, Radiation Oncology Department,, Toulouse, France; ⁸University Hospital Schleswig-Holstein, Department of Radiation Oncology, Kiel, Germany; ⁹University of Turin, Department of Oncology-Radiation Oncology, Turin, Italy; ¹⁰Fondazione Policlinico Universitario Agostino Gemelli IRCCS, Radiation Oncology and Hematology Department, Roma, Italy; ¹¹University of Milan, Department of Oncology and Hemato-Oncology, Milan, Italy; ¹²IEO European Institute of Oncology IRCCS, Division of Radiation Oncology, Milan, Italy; ¹³Azienda Ospedaliero Universitaria Careggi, Radiation Oncology Unit, Oncology Department, Florence, Italy; ¹⁴Haaglanden Medical Center, Research&Development, Leidschendam, The Netherlands; ¹⁵Amsterdam University Medical Center, Department of Radiation Oncology, Amsterdam, The Netherlands; ¹⁶University Hospital Zurich, University of Zurich, Department of Radiation Oncology, Zurich, Switzerland; ¹⁷The Christie NHS Foundation Trust, Department of Clinical Oncology, Manchester, United Kingdom; ¹⁸Royal Marsden NHS Foundation Trust and Institute of Cancer Research, Department of Radiotherapy, Sutton, United Kingdom; ¹⁹Nordland Hospital, Department of Oncology and Palliative Medicine, Bodø, Norway; ²⁰Europe Hospitals, Department of Radiotherapy, Brussels, Belgium; ²¹Maria Skłodowska-Curie National Research Institute of Oncology, Department of Radiotherapy, , Gliwice, Poland; ²²San Roque University Hospital, Fernando Pessoa Canarias University, Canarian Comprehensive Cancer Center, Las Palmas, Spain; ²³San Francisco de Asís and La Milagrosa Hospitals, Department of Radiation Oncology, Madrid, Spain; ²⁴Ghent University Hospital and Ghent University, Department of Radiation Oncology, Ghent, Belgium; ²⁵Ghent University Hospital, Department of Radiation Oncology and Experimental Cancer Research, Ghent, Belgium; ²⁶Ghent University, Department of Human Structure and Repair, Ghent, Belgium; ²⁷LMU Munich, Institute of Ethics, History and Theory of Medicine, Munich, Germany; ²⁸Royal Marsden NHS Foundation Trust, Department of Radiotherapy, London, United Kingdom; ²⁹Gustave Roussy, Université Paris Saclay, Department of Radiation Oncology, Villejuif, France

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Purpose or Objective

Shared decision-making (SDM) related concepts (patient empowerment, engagement, enablement, involvement, and participation, etc.) have recently been extensively used in radiation oncology-related research in the move toward patient-centered care. Although each term describes a distinct process and a specific patient outcome, these terms are frequently used interchangeably.
A clear Terminology of patient empowerment and its neighboring concepts from a radiation oncology perspective would improve further research and reporting in this area.

Material and Methods

27 radiation oncology experts from 11 European countries agreed to participate in an ESTRO-endorsed Delphi project aiming to reach an agreed mapping of SDM-related concepts.

The survey was prepared by a scientific committee composed of 5 leading radiation oncology experts, a psycho-oncologist, an ethics specialist, a patient representative, and a support group representative. Subsequently, 10 European patient representatives participated in an additional Delphi round to validate the results of the study.

Results

Between August and September 2021, the selected research scientific committee developed a Delphi survey including 60 statements addressing the concept of patient empowerment in radiation oncology, the requirements and the tools for successful implementation, the boundaries to the related concepts, and the challenges to the Patient Empowerment model.

Between October 2021 and March 2022, the survey was sent to a pre-selected panel of European radiation oncology experts in three rounds following the Delphi methodology. Out of the 27 contacted experts, 26 participated in the study completing the three rounds of the Delphi consensus (96,3% response rate). At the end of the third round, a consensus was reached for 67 statements (100%), with 7 statements added by the panelists during the Delphi rounds. In addition, the panel of patient representatives agreed upon 65 sAn tatements (97%). The agreement's evolution is illustrated in Figure 1, while Figure 2 shows an illustration of the suggested concept mapping.

Conclusion

This expert and patient consensus highlights the increasing importance of empowering patients undergoing radiotherapy. The agreed concept mapping has the purpose of providing standardization of reporting of patient-centered-care-related research in radiation oncology. Such a conceptualization may have value in SDM-related cancer research in general as well.