Patients’ perspective in the context of proton beam therapy: summary of a Nordic workshop

Abstract

Introduction: On 15-16 November 2019, the Skandion Clinic in Sweden hosted the first Nordic workshop on 'Patients' perspective in proton beam therapy'. The workshop was conducted to describe and compare the patient care in PBT clinics in the Nordic countries and to initiate a collaboration, with the target to ensure patient participation and reduce the risk of inequity of access by lowering the barriers for accepting PBT in a distant clinic. The overarching aim of this workshop was to describe and compare the use of patients' perspectives in the Nordic PBT clinics. Material and Methods: Twelve participants attended the workshop, representing Denmark, Norway and Sweden. The participants were registered nurses working in patient care, researchers, physicist and leaders of the Skandion Clinic. Results: The consensus of the workshop was that systematic use of patient experiences on individual and group level is essential for developing clinical practice and understanding the overall effects of PBT. A difference in how the Nordic countries use patient experiences in clinical practise was found. The importance of lowering the barriers for participation in national proton trials and proton treatment were emphasized, however, there is a lack of knowledge about individual and organizational barriers to accepting PBT, and further research is therefore needed. Conclusion: Collaboration between the Nordic countries regarding patients' perspectives in the context of PBT is of importance to compare national differences as well as to find similarities, but most importantly to learn from each other and to improve patient care. Nordic collaboration with focus on systematic collection of patient-reported outcomes in the context of PBT is unique. Collaboration in research offers the possibility to increase the inclusion of patients' perspectives in study protocols.

Evaluating patient reported outcomes and experiences in a novel proton beam clinic – challenges, activities, and outcomes of the ProtonCare project

“…As facilities for PBT are nationally and globally relatively few, international collaboration is necessary to build the clinical evidence for the effect. A Nordic work-shop on the subject of “ Patients perspective in proton beam therapy” was held in Uppsala for the first time in autumn 2019, with members from Finland, Norway, Denmark and Sweden [ 32 ]. Future annual meetings are planned to collaborate within the field.…”

Patients’ needs in proton therapy: A survey among ten European facilities

“…A centralized system (national network referring patients to two PT centers) has been implemented in Northern European countries. In this context, a recent workshop has shown that access to PT could imply for patients to be treated far away from home with a potential risk of inequity due to personal or practical barriers in a long-course of treatment [14] . In accordance with this finding, patients’ geographical challenges represented the main issue also according to the respondents to this survey.…”

“…In the Nordic European regions, two facilities centralized PT care. Ohlsson-Nevo et al reported the results of a workshop on patients’ perspectives in this context [14] . Among different analyzed factors, it has been highlighted that access to PT facilities could imply for patients to be treated away from home.…”

Is there a Nordic solution for the ‘proton-problem’?

“…The paper by Ohlsson-Nevo et al describes the possibilities linked to systematic use of patient experiences on both individual and group level [5]. The participants concluded that inclusion of patients' perspectives in study protocols and systematic collection of patient-reported outcomes together with clinical outcomes is unique possibilities for future research on proton therapy.…”