Background: Patients with rectal cancer who have a temporary ostomy report good quality of life despite identifying a number of stoma-related difficulties.
Objective: This study aimed to qualitatively explore the experiences of patients with rectal cancer who have a temporary ileostomy to better understand the discordant findings of previous quantitative quality-of-life studies.
Design/setting: We conducted in-depth qualitative interviews with patients with stage I to III rectal cancer who underwent sphincter-preserving surgery that resulted in a temporary ileostomy.
Patients: Twenty-six patients (54% male, median age 54) participated. Sixty-five percent had stage III disease, and 88% received neoadjuvant therapy.
Main outcome measures: Interviews examined preoperative expectations, overall experience, and stoma impact on quality of life. With the use of grounded theory, 2 investigators independently performed line-by-line content analysis to identify key themes. Analysis continued until data saturation.
Results: Two major themes were identified: stoma-related difficulties and perceived response shift. Patients reported difficulty in exercise, sleep, social activities, sexuality, and clothing. Patients' perception of quality of life with a temporary stoma appears to have undergone a response shift through recalibration of their standards for measuring quality of life (internal measurement scale altered by side effects of neoadjuvant/adjuvant treatment, temporary nature of stoma, and accommodation to stoma) and reconceptualization of what "good quality of life" is (stoma difficulties were felt to be less important in comparison with cancer-related mortality).
Limitations: Although qualitative research is, by design, not generalizable, these data support our previous quantitative work. This convergence of findings suggests that our data may be representative.
Conclusions: A temporary ileostomy represents significant difficulties for patients with rectal cancer. However, because of response shift, these difficulties may not be perceived as important to overall quality of life when considered within the context of the cancer experience. Our results can inform preoperative consultations with patients who have rectal cancer to assist in aligning patient expectations of what life with a temporary ileostomy may be like.