Bowel dysfunction after rectal cancer treatment: a study comparing the specialist's versus patient's perspective

OBJECTIVES: To investigate how bowel dysfunction after sphincter-preserving rectal cancer treatment, known as low anterior resection syndrome (LARS), is perceived by rectal cancer specialists, in relation to the patient's experience. DESIGN: Questionnaire study. SETTING: International. PARTICIPANTS: 58 rectal cancer specialists (45 colorectal surgeons and 13 radiation oncologists). RESEARCH PROCEDURE: The Low Anterior Resection Syndrome Score (LARS score) is a five-item instrument for evaluation of LARS, which was developed from and validated on 961 patients. The 58 specialists individually completed two LARS score-based exercises. In Exercise 1, they were asked to select, from a list of bowel dysfunction issues, five items that they considered to disturb patients the most. In Exercise 2, they were given a list of scores to assign to the LARS score items, according to the impact on quality of life (QOL). OUTCOME MEASURES: In Exercise 1, the frequency of selection of each issue, particularly the five items included in the LARS score, was compared with the frequency of being selected at random. In Exercise 2, the answers were compared with the original patient-derived scores. RESULTS: Four of the five LARS score issues had the highest frequencies of selection (urgency, clustering, incontinence for liquid stool and frequency of bowel movements), which were also higher than random. However, the remaining LARS score issue (incontinence for flatus) showed a lower frequency than random. Scores assigned by the specialists were significantly different from the patient-derived scores (p<0.01). The specialists grossly overestimated the impact of incontinence for liquid stool and frequent bowel movements on QOL, while they markedly underestimated the impact of clustering and urgency. The results did not differ between surgeons and oncologists. CONCLUSIONS: Rectal cancer specialists do not have a thorough understanding of which bowel dysfunction symptoms truly matter to the patient, nor how these symptoms affect QOL.