Self-reported fecal incontinence and quality of life among gynecological cancer survivors

Sammanfattning: Gastrointestinal symptoms following pelvic radiotherapy are common; however, selfreported descriptions of gastrointestinal symptoms and their impact on daily life among gynecological cancer survivors are rare in the literature. The aim of this thesis was to investigate the prevalence of long-lasting gastrointestinal symptoms after pelvic radiotherapy among gynecological cancer survivors and to explore its impact on quality of life. In addition, we wanted to study the perception of being part of a study encompassing an extensive study-specific questionnaire. We identified 789 eligible women in the Stockholm and Gothenburg areas, treated with pelvic radiotherapy during the period 1991–2003, alone or as part of combined treatment, for gynecological cancer. As controls, we randomly recruited 478 women, frequencymatched by age and residence from the Swedish Population Registry. We collected data in 2006 by means of a study-specific, validated, postal questionnaire including 351 questions covering symptoms from the pelvic region. We asked about demographics, psychological and quality of life issues as well as social functioning. Participation rate was 78 percent for cancer survivors and 72 percent for controls. To obtain links between long-lasting symptoms and quality of life, we provided detailed characteristics of the gynecological cancer survivors. The mean age was 64.4 years (range 28 to79 years) and the average follow-up period after completion of radiotherapy was 86.1 months (range 30 to 183 months). The most common diagnosis was endometrial cancer (59 percent) followed by cervical cancer (23 percent). Treatment included surgery in 90 percent of the survivors. In 26 of 32 self-reported gastrointestinal symptoms we found a statistically significant increased age-adjusted relative risk (RR) for the cancer survivors, when compared to control women. The greatest age-adjusted absolute risk difference between cancer survivors and control women was observed for the symptom “defecation urgency with fecal leakage” with a prevalence of 49 percent among cancer survivors and 12 percent among controls. The highest age-adjusted RR 11.9 (95% CI: 3.8–37.8), was for the symptom “emptying of all stools into clothing without forewarning”. The symptom “emptying of all stools into clothing without forewarning” was reported by 70 cancer survivors (12 percent), with lowered quality of life in 74 percent of the 70 cancer survivors. This symptom kept the survivors from going to parties (RR 11.8; 95% CI 6.6-21.1), travelling (RR 9.3; 95% CI 5.3-16.5), affected work ability (RR 7.9; 95% CI 3.8-16.4), hindered their sexual life (RR 9.2; 95% CI 4.8-17.6), and changed them as persons (RR 4.9; 95% CI 2.9-8.1). To assess the perception of participation in a study-specific questionnaire survey we also included a cohort of 491 cystectomized urinary bladder cancer survivors. Among the total cohort (N=1068), 95 percent reported that the study was valuable and 54 percent felt they had been positively affected by their participation. This thesis shows quality of life would drastically improve if gynecological cancer survivors could get rid of their gastrointestinal symptoms. For future survivors, we can learn about threshold dose of ionizing radiation with relevant risk-organs, to avoid inducing the gastrointestinal symptoms. For today´s survivors, we can learn to designeffective interventions.