Enhancing patient involvement in the scoring of oesophageal cancer treatment complications: insights from a focus group

Purpose/Objective<br/>Standard curative approaches for oesophageal cancer are associated with a wide range of treatment related complications which significantly impact the quality of life of patients. As such, minimizing complications is a key<br/>goal in treating oesophageal cancer, particularly for patients undergoing chemoradiotherapy. To accurately assess the impact of the complete treatment course, a scoring system is being developed to assess the impact of 36<br/>complications on a scale from 0 to 100, incorporating input from healthcare professionals and patients. This system aims to provide a "complication sum score" reflecting the overall impact of complications on quality of life. While<br/>healthcare professionals contributed successfully to a Delphi study, patient engagement proved challenging. Patients struggled to understand the questionnaire and rate complications they did not experienced. This study aims to improve the methodology, enhancing patient participation in the scoring process.<br/><br/>Material/Methods<br/>A qualitative approach was used to explore patient experiences. Focus groups were organized to gather feedback on improving the clarity and relevance of the questionnaire. Participants were recruited from the digital patient panel of a Dutch radiotherapy centre. Two focus groups, with 7–11 participants each, were held, lasting 3-4 hours. Patients discussed how to improve the questionnaire and make it more understandable, particularly for complications they had not experienced. A radiation oncologist facilitated the discussions using a semi-structured interview guide. Sessions were audio-recorded, and data were analysed through inductive thematic analysis, with two independent researchers coding the data. Thematic saturation was reached, and patterns across groups were analysed.<br/><br/>Results<br/>Eighteen participants (16.7% female, 83.3% male, aged 40-79) joined the focus groups. Participants noted the questionnaire’s language was too complex (n=26), found it difficult to rate unexperienced complications (n=7), and encountered unclear instructions (n=6) and response scales (0-100) (n=5). To better incorporate patient input, participants suggested revising the methodology (n=18), asking patients to rate only experienced complications (n=11), simplifying the language (n=11), and focusing on the impact on daily life (n=5). Figures 1 and 2 graphically show the results for each focus group providing details on the similarities and differences between the groups. Facilitators observed unequal participation in the discussions due to group dynamics.<br/><br/>Conclusion<br/>Focus group discussions identified several areas for improving the complication scoring process, including simplifying the questionnaire, adjusting the language, and focusing on experienced side effects. These findings will help refine the system, leading to a more patient-centred approach to evaluate complications in oesophageal cancer treatment in the future.