‘Because Everybody is so Different’: a qualitative analysis of the lived experiences and information needs of rectal cancer survivors

OBJECTIVE: To (1) characterise (A) the lived experiences and (B) information needs of patients with rectal cancer; and (2) compare to the perceived lived experiences and information needs of colorectal surgeons. DESIGN: We conducted 1-hour semistructured qualitative interviews, dual independent transcript coding and thematic analysis. SETTING/PARTICIPANTS: Interviews included rectal cancer survivors (stages I–III), some accompanied by caregivers, at Dartmouth-Hitchcock Medical Center and experienced colorectal surgeons. RESULTS: We performed 25 interviews involving 30 participants, including 15 patients with 5 caregivers, plus 10 physicians. Two major themes emerged. First, patients reported major impacts on their lives following rectal cancer, including on their everyday lives and leisure activities; identity, self-confidence and intimacy; mental health, especially anxiety. These impacts were mediated by their medical experiences, lifestyle and attitudes. Second, the diversity of effects on patients’ lives means that care, counselling and information needs should be personalised for a better medical experience and outcomes. Surgeons did not report knowledge of the full range of patient experiences and reported limited counselling in key areas, particularly concerning intimacy and mental health. CONCLUSION: Rectal cancer diagnosis, treatment and survivorship dramatically affect all people, regardless of which surgical treatment they undergo. Effects are varied and necessitate customised care, counselling and information, which surgeons are not currently providing. Because rectal cancer affects every part of patients’ lives, they need holistic support and information. Patients would benefit from substantial support after treatment as they establish a new normal.