Colorectal cancer survivors’ long-term recollections of their illness and therapy up to seven years after enrolment into a randomised controlled clinical trial

BACKGROUND: As a consequence of effective treatment procedures, the number of long-term survivors of colorectal cancer is ever increasing. Adopting the method of a previous study on breast cancer patients, the goal of the present research was to investigate colorectal cancer patients’ recollections of their illness and treatment experiences up to seven years after they have been enrolled in a randomised controlled clinical trial on the direct improvement of quality of life (RCT DIQOL). METHODS: Colorectal cancer survivors in Bavaria, Germany were mailed a questionnaire on average 78·3 months after the start of their therapy and enrolment into RCT DIQOL. The questionnaire enquired about their worst experience during the colorectal cancer episode, positive aspects of the illness, and any advice they would give to newly diagnosed patients. Patient responses were categorised by two independent raters and cross-checked by a third independent rater. Frequencies of these categories were then quantitatively analysed using descriptive statistics. RESULTS: Of 146 remaining survivors initially enrolled in RCT DIQOL, 96 (66%) returned the questionnaire. The majority (33%) of statements regarding the worst experience was referring to “psychological distress”, followed by “indigestion and discomfort during defecation” (17%), and “cancer diagnosis” (16%). Among survivors with history of a stoma, the majority (36%) regarded “stoma” as their worst experience. With 45%, “change in life priorities” has been the most frequent positive category before “support by physicians/ nurses” (25%). 43% of the survivors deemed “fighting spirit” as most important advice to overcome the disease. CONCLUSION: Even after many years, colorectal cancer survivors clearly remember experiences from the time of their illness. Echoing the results of the previous breast cancer survivors’ study, “psychological distress”, “change in life priorities” and “fighting spirit” emerged as prominent concepts. In addition, some aspects like the impact of a stoma are of specific importance for colorectal cancer survivors. These findings can be used to inform programmes to improve patient- and quality of life centred aftercare of tumour patients. CLINICAL TRIAL INFORMATION: NCT04930016, date of registration 18.06.2021.