BACKGROUND
Bowel dysfunction is a known complication of colorectal cancer (CRC) surgery. Poor bowel control has a detrimental impact on survivors’ health-related quality of life (HRQOL). This analysis describes the dietary and behavioral adjustments used by CRC survivors to manage bowel dysfunction and compares adjustments used by survivors with permanent ostomy to those with anastomosis.
METHODS
This mixed-methods analysis included pooled data from several studies that assessed HRQOL in CRC survivors. In all studies, CRC survivors with or without permanent ostomies (N=856) were surveyed using the City of Hope Quality of Life Colorectal Cancer tool. Dietary adjustments were compared by ostomy status and by overall HRQOL score (high versus low). Qualitative data from 13 focus groups and 30 interviews were analyzed to explore specific strategies used by survivors to manage bowel dysfunction.
RESULTS
CRC survivors made substantial, permanent dietary and behavioral adjustments after surgery, regardless of ostomy status. Survivors who took longer after surgery to become comfortable with their diet or regain their appetite were more likely to report worse HRQOL. Adjustments to control bowel function were divided into four major strategies: dietary adjustments, behavioral adjustments, exercise, and medication use.
CONCLUSIONS
CRC survivors struggled with unpredictable bowel function and may fail to find a set of management strategies to achieve regularity. Understanding the myriad adjustments used by CRC survivors may lead to evidence-based interventions to foster positive adjustments after surgery and through long-term survivorship.
Introduction
Sexual dysfunction is a treatment sequela in rectal cancer (RC) survivors. Differences in health-related quality of life (HRQOL) may occur based on ostomy status (permanent ostomy versus anastomosis).
Aim
To describe alterations in sexual function and HRQOL based on ostomy status in long-term (≥ 5 years) RC survivors.
Methods
RC survivors with an ostomy (N=181) or anastomosis (N=394) were surveyed using validated HRQOL and functional status tools. We compared sexuality outcomes between the ostomy and anastomosis group, and reported differences adjusted for clinical and demographic characteristics. Qualitative data from one open-ended question on survivors’ greatest challenges since their surgery were analyzed to explore sexuality, symptoms, and relationships.
Main Outcome Measures
Whether sexually active, satisfaction with sexual activity, and select sexual dysfunction items from the Modified City of Hope Quality of Life-Ostomy (mCOH-QOL-O).
Results
Survivors with a permanent ostomy were more likely to have been sexually inactive after surgery if it occurred before year 2000, and experience dissatisfaction with appearance, interference with personal relationships and intimacy, and lower overall HRQOL. Female RC survivors with an ostomy were more likely to have problems with vaginal strictures and vaginal pain after surgery that persisted at the time of survey (5+ years later). Radiation treatment, tumor stage, soilage of garments in bed, and higher Charlson-Deyo co-morbidity scores were negatively associated with outcomes. Six qualitative themes emerged: loss of and decreased sexual activity; psychological issues with sexual activity, physical issues with sexual activity; partner rejection; ostomy interference with sexual activity; and positive experiences with sexuality.
Conclusions
Sexual dysfunction is a common long-term sequela of RC treatment, with more problems observed in survivors with a permanent ostomy. This warrants widespread implementation of targeted interventions to manage sexual dysfunction and improve HRQOL for these survivors.
The majority of RC survivors reported ostomy-related self-care challenges, and 31% experienced problems across multiple domains of ostomy self-care. In addition, most survivors reported significant physical challenges that could lead to ostomy-related disability. Although the participants surveyed had access to ostomy care nurses, the care gaps we found suggest that additional work is needed to understand barriers to ostomy care, reduce unmet needs, and improve well-being among this group.
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