Ongoing ostomy self-care challenges of long-term rectal cancer survivors.

PURPOSE: Surgical treatment for rectal cancer (RC) can result in an intestinal ostomy that requires lifelong adaptation and investment of physical, cognitive, and financial resources. However, little is known about the extent of ongoing challenges related to ostomy self-care among long-term RC survivors. We analyzed the prevalence of self-reported ostomy self-care challenges and the physical and environmental factors that can support or undermine ostomy self-care. METHODS: We mailed surveys to long-term (≥ 5 years post-diagnosis) RC survivors, including 177 adults with ostomies who were members of integrated health systems in northern California, Oregon, and Washington State. Potential participants were identified through tumor registries. Data were also extracted from electronic health records. RESULTS: The response rate was 65%. The majority of respondents were male (67%), and the mean age was 75 years. Sixty-three percent of respondents reported at least one ostomy self-care challenge. The most common challenges were leakage or skin problems around the ostomy and needing to change the pouching system too frequently. Twenty-two percent reported difficulty caring for their ostomy. Younger age and higher BMI were consistently related to ostomy self-care challenges. CONCLUSIONS: 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.

Clinical and Economic Burden of Peristomal Skin Complications in Patients With Recent Ostomies.

PURPOSE: The purpose of this study was to estimate the risk and economic burden of peristomal skin complications (PSCs) in a large integrated healthcare system in the Midwestern United States. DESIGN: Retrospective cohort study. SUBJECTS AND SETTING: The sample comprised 128 patients; 40% (n = 51) underwent colostomy, 50% (n = 64) underwent ileostomy, and 10% (n = 13) underwent urostomy. Their average age was 60.6 ± 15.6 years at the time of ostomy surgery. METHODS: Using administrative data, we retrospectively identified all patients who underwent colostomy, ileostomy, or urostomy between January 1, 2008, and November 30, 2012. Trained medical abstractors then reviewed the clinical records of these persons to identify those with evidence of PSC within 90 days of ostomy surgery. We then examined levels of healthcare utilization and costs over a 120-day period, beginning with date of surgery, for patients with and without PSC, respectively. Our analyses were principally descriptive in nature. RESULTS: The study cohort comprised 128 patients who underwent ostomy surgery (colostomy, n = 51 [40%]; ileostomy, n = 64 [50%]; urostomy, n = 13 [10%]). Approximately one-third (36.7%) had evidence of a PSC in the 90-day period following surgery (urinary diversion, 7.7%; colostomy, 35.3%; ileostomy, 43.8%). The average time from surgery to PSC was 23.7 ± 20.5 days (mean ± SD). Patients with PSC had index admissions that averaged 21.5 days versus 13.9 days for those without these complications. Corresponding rates of hospital readmission within the 120-day period following surgery were 47% versus 33%, respectively. Total healthcare costs over 120 days were almost $80,000 higher for patients with PSCs. CONCLUSIONS: Approximately one-third of ostomy patients over a 5-year study period had evidence of PSCs within 90 days of surgery. Costs of care were substantially higher for patients with these complications.

Long-term follow-up of patients after antegrade continence enema procedure.

BACKGROUND: Antegrade continence enema (ACE) has become an important therapeutic modality in the treatment of intractable constipation and fecal incontinence. There are little data available on the long-term performance of the ACE procedure in children. METHODS: A retrospective review of patients who underwent the ACE procedure was conducted. Irrigation characteristics and complications were noted. Outcome was assessed for individual encounters based on frequency of bowel movements, incontinence, pain, and predictability. RESULTS: One hundred seventeen patients underwent an ACE. One hundred five patients had at least 6 months of follow-up, and were included in the analysis. Diagnoses included myelodysplasia (39%), functional intractable constipation (26%), anorectal malformations (21%), nonrelaxing internal anal sphincter (7%), cerebral palsy (3%), and other diagnoses (4%). The average follow-up was 68 months (range 7-178 months). At the last follow-up, 69% of patients had successful bowel management. Of the 31% of patients who did not have successful bowel management, 20% were using the ACE despite suboptimal results, 10% required surgical removal, and 2% were not using the ACE because of behavioral opposition to it. Patients were started on normal saline, but were switched to GoLYTELY (PEG-3350 and electrolyte solution) if there was an inadequate response (61% at final encounter). Additives were needed in 34% of patients. The average irrigation dose was 23 ± 0.7 mL/kg. The average toilet sitting time was 51.7 ± 3.5 minutes, with infusions running for 12.1 ± 1.2 minutes. Stomal complications occurred in 63% (infection, leakage, and stenosis) of patients, 33% required surgical revision and 6% eventually required diverting ostomies. CONCLUSIONS: Long-term use of the ACE gives successful results in 69% of patients, whereas 63% had a stoma-related complication and 33% required surgical revision of the stoma.