Patient Education for Stoma Patients

Since the first successful intestinal stoma was intentionally created in 1793 for an infant with imperforate anus, stoma creation has become commonplace despite the self-imposed shroud of secrecy that surrounds many patients with stomas (ostomates). Nearly one million Americans are currently living with an ostomy and an estimated 100,000 ostomies are created annually in the United States.1, 2, 3, 4 Despite their necessity and often life-saving potential, stomas (ostomies) can inflict significant psychologic and medical comorbidity, leaving some patients more fearful of living with the stoma than the underlying surgical disease that required a stoma. The distress of stoma creation coupled with the ubiquity of stomas renders stoma-related care and education an underserved orphan interest in most medical education curriculums.

Unfortunately, depression, anxiety, embarrassment, and frustration of living with a stoma can negatively impact ostomate patient quality of life.5, 6, 7, 8, 9 Patients often feel under-educated regarding their ostomies, and these feelings have been associated with emotional and social problems.10 Stoma complication rates are high and impact health-related quality outcomes.11,12 Unsurprisingly, perioperative readmission rates in new ostomates are high and impact healthcare systems. Ileostomies and other non-colostomy intestinal stomas are tied for the highest readmission rate in U.S. hospitals (29.1%) with kidney transplants.13

Fortunately, multiple educational resources exist to help empower patients to adapt to life with an ostomy, improve their quality of life, and reduce complications and readmissions. Patient education is an important avenue towards achieving stoma-related self-efficacy, which has been shown to improve acceptance of the stoma and improve ostomate quality of life.14, 15, 16, 17, 18 A variety of patient-facing educational programs and internet resources are available (Table 1: Patient Educational Resources for New Ostomates). The goal of this review is to describe and promote awareness of contemporary stoma educational options to all types of health care providers so that ostomates can achieve optimal outcomes. Since it is important for all providers - not just stoma nurses – to understand the basics of stoma care given the ubiquity of stomas in the population, this review was written with an intended audience of surgeons, gastroenterologists, primary care physicians, trainees, and advance practice providers. The authors secondarily hope the included tables and checklists may prompt patients to ask the right questions from their healthcare providers and guide ostomates to helpful resources as they adjust to life with a stoma.

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