Report from the RTT track, proffered papers session
ESTRO 2024 Congress report
Radiotherapy can have significant physical and psychological effects on patients. Understanding the impact of these effects as well as evaluating quality of life helps healthcare providers to offer more comprehensive care that addresses not only the disease, but also each patient`s overall well-being. Incorporating patient feedback enables us to provide care that is tailored to individual needs while increasing patient adherence to the treatment. This session introduced the topic of patient experiences from different perspectives and allowed the audience to get into insightful discussions.
Pia Krause Moller from Denmark introduced the SOFT trial, which was carried out in four centres, three in Denmark and one in the USA. The aim was to investigate patients with oligometastatic disease and changes in patient-reported symptoms in the six months after the application of MR-guided stereotactic ablative ratiotherapy (SABR) as well as health-related quality of life (QOL) in a one-year follow-up period. The results from the 121 patients who were enrolled in the study showed that the patients reported higher prevalences of nausea and diarrhoea than did the clinicians for their patients, which is an interesting finding that highlights the significance of measuring patient-reported outcomes (PROs). The QOL rating across the patients was stable; however, the patients who stated that they had suffered moderate or severe fatigue rated their health as most affected during the six months after SABR. Moreover, the patients’ self-rated health scores worsened when they restarted systemic treatment in the follow-up period.
The study response rate was significantly high, around 80%. A member of the audience asked how this had been achieved. Dr Moller said that this was probably due to the strong digital skills of the Danish and that the aim of the study had been thoroughly introduced to the potential participants.
The chair of the session asked whether Dr Moller thought that differences were greatest between objective clinical measures and PROs in cases of metastatic disease. Dr Moller considered that deeper analysis would be required to discover whether this was the case, due to differences in the baseline and in clinicians` reporting.
Fiona Sinclair (UK) gave an engaging talk about an intervention that had been tested to address the fear of cancer recurrence among breast cancer patients, and the differences between online and in-person group sessions. Levels of fear that the cancer will return, progress or metastasise are moderate or high in nearly half of all breast cancer patients and up to 70% among vulnerable groups such as young women. Such levels of worry have an impact on the healthcare system as well as on the individuals concerned. Patients are unable to plan their futures and they experience anxiety and depression that are triggered by hospital appointments and test results, hearing about disease recurrence in other patients, the influence of media, new aches and pains, etc. To address this issue, a six-week group programme of acceptance and commitment therapy was established by a radiation therapist (RTT) and a psychologist. Participants experienced improvements across all outcome measures for both the digital and the in-person delivery modes. Analysis Objective analysis of changes in outcome measures between the two forms of delivery found the interventions to be comparable. Provision of the option of online delivery may improve accessibility for those living in remote locations or with disabilities, as well as cost-saving benefits.
The audience was interested to know whether there were any notable preferences among the participants in terms of digital or in-person sessions. Ms Sinclair did not declare any significant observations but remarked that the peer-support element was better during in-person sessions.
The third talk was given by Lisa Durrant (UK), who shared insights from a study that aimed to evaluate the impact of the late effects of radiotherapy through the use of the National Health Service survey to discover quality of life (QoL) among cancer patients. To start with, Dr Durrant introduced an interesting point regarding the difference between living and surviving. Survival rates are widely measured, published and celebrated, but measures of living are much more vague. Radiotherapy is life-saving, yet late effects from the treatment can be life-long, life-changing and life-limiting and there are limited data to evaluate these effects, so the scale and burden of the problem are masked. Although radiotherapy has been a mainstay of cancer treatment for decades, its impact on people`s lives has been poorly understood due to lack of standardisation in QoL reporting. The study revealed that current questionnaires that are offered for completion only 18 months after diagnosis do not reflect the QoL of those patients with enduring late effects, which can develop and persist many years after treatment. The patients who had access to the novel South West radiotherapy late-effects services reported worse symptoms and poorer function than those who answered regular patient-reported outcome measure surveys.
A discussion revealed that there were patients who acknowledged treatment regret – that if they had known the late effects would be so bad, they would have chosen differently. This brought up patient education, which could be improved regarding late effects, although the treatment consent form usually includes this information. An audience member asked whether the data from the study could be linked to the radiotherapy data. Dr Durrant said this was probably possible but that the late-effects service considered the patients in a more holistic way than did the radiotherapy data.
As new treatments and interventions are developed to improve patient outcomes, they should be designed with the well-being of patients in mind; thus, patients should be involved in research design and implementation. Carole Burnett (UK) shared her experience of involving patients in the design and implementation of the PREHABS study, which was designed to understand whether it was practical to embed support to change lifestyle behaviours into the clinical pathway of patients undergoing curative radiotherapy for lung cancer. Patients were involved in all stages of the project, from design to dissemination, to ensure that the proposed interventions were acceptable to the intended patient audience. There were two distinct groups of patients: those who had completed their lung cancer treatment and those who were undergoing it. Both groups provided valuable insights to the study.
The audience was interested to know how much time the patients had to devote to be members of the group. Dr Burnett shared the timetable of the group meetings and added that remuneration had been offered but refused. She considered that such recompense would require consideration for phase two of the study, which would need more of the patients’ time. She commented that whether or not participants accepted any recompense for taking part, it was important to ensure that they were aware that their input was highly valued.
The final speaker of this session was Nicola Iosca (Italy), whose presentation was focused on a survey that had been carried out in Italy regarding knowledge and perceptions of radiotherapy among the social-media-based community. The study was initiated by three Italian RTTs who had previously founded a community entitled “radioterapia insieme” (radiotherapy together) to share information and initiatives related to oncological radiotherapy practices through popular social media platforms and provide in-depth scientific details on a blog website. This was also followed by a podcast. The survey to understand community characteristics revealed that the respondents had various relationships with radiotherapy and tended to be younger and more educated than the average population. This emphasises that health literacy through social channels is a new phenomenon that is predominantly popular among younger generations, many of whom are social-media users. Dr Iosca ended his talk with a thought from one of the respondents: “There tends to be a negative perception attached whenever ionising radiation is used, despite it being a safe and effective science; thus, there should be greater awareness among patients and the population.”
The topic started a lively discussion in the audience regarding the lack of awareness of radiotherapy among the general population. The ideas that were mentioned to improve this situation included the staging of soap operas to share positive messages about radiotherapy. Also, another radiotherapy podcast author asked how to cope with negative or even false messages that are shared by patients themselves. Dr Iosca said that his podcast uses a professional to answer direct messages privately. The session chair said that Trinity College Dublin has established a massive open online course on radiotherapy for the public, which has great international uptake but that the content must be constantly updated to improve health literacy.
The session comprised talks and discussions of great interest and value in terms of bridging the care gap. A focus on patient experiences, QoL and general awareness of radiotherapy should lead to more empathetic, effective and patient-centred care, which ultimately will improve both personal and clinical outcomes for patients.
Siret Kivistik, MSc
siretkivistik@nooruse.ee
Affiliations:
1. Tartu University Hospital, Cancer Centre/Department of Radio- and Oncotherapy
2. Tartu Healthcare College, Department of Radiography and Biomedical Laboratory Science
3. Turky University, Department of Nursing Science