Perceptions of phantom rectum syndrome and health-related quality of life in patients following abdominoperineal resection for rectal cancer

Abstract

Purpose: The aim of the study was to investigate how patients described their perceptions of phantom rectum syndrome after abdominoperineal resection and ostomy creation, and its influence on daily living and health-related quality of life. A further aim was to find out strategies patients use to alleviate phantom rectum syndrome sensations.

Subjects and setting: Twenty-five patients who underwent abdominoperineal resection and a colostomy (18 men and 7 women; median age 5 63 years; range, 40-78 years) at Sahlgrenska University Hospital, Göteborg, Sweden, participated in the study.

Methods: At follow-up 8 months postsurgery, a WOC nurse interviewed patients with a structured questionnaire about the experience of nonpainful and painful sensations in the perineal area. Health-related quality of life was evaluated using a general cancer-specific instrument (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire version 3.0).

Results: Twenty-four patients (96%) experienced painful or nonpainful phantom rectum syndrome at some point during the first 8 postoperative months. The nonpainful sensations (20 patients) occurred in connection with emptying of feces via the stoma, when performing colostomy irrigation, at rest, or in various positions. Fifteen patients experienced painful sensations, characterized as pins and needles, pain in the perineal area, stinging, and burning occurring mostly in sitting positions. Patients with painful sensations had statistically significant higher scores regarding pain and lower scores for social function than those without painful sensations (P < .031). Phantom rectum symptoms caused worries and concerns and influenced daily life in 29% (n = 5).

Conclusions: Phantom rectum syndrome is prevalent in patients undergoing abdominoperineal resection and ostomy creation. Information about phantom rectum syndrome should be shared preoperatively and during follow-up in order to promote optimal quality of life and alleviate bothersome symptoms and concerns associated with phantom rectum syndrome.