A new bowel management program and quality of life database help the Reconstructive Pelvic Medicine Clinic improve long-term outcomes.
The Reconstructive Pelvic Medicine Clinic at Seattle Children’s took two important steps to provide better care for patients with congenital pelvic anomalies and their families in 2013.
The clinic built a quality of life database to track the long-term benefits of the treatment the clinic provides and established an outpatient bowel management treatment program (one of the few of its kind in the country) to help patients with fecal incontinence.
Pelvic anomalies cause a complex web of physical, social and emotional problems for patients and families. The clinic, led by general surgeon Dr. Jeffrey Avansino, brings together a team of surgeons, urologists, gynecologists, a gastroenterologist and other pediatric specialists to provide the multifaceted care they need.
The quality of life database will collect some of the first information gathered anywhere about the difference treatment makes in the lives of patients with pelvic anomalies.
“Our mission is to improve the quality of life for our patients and their families, but you can’t do that unless you measure it,” says urologist Dr. Paul Merguerian. “We assume what we do is making a positive difference, but we need to understand what does and doesn’t make life better for patients and families so we can provide the treatment that works best for them.”
The clinic will begin gathering quality of life data from patients and families in 2014.
Giving parents a plan
The bowel management treatment program fills a gap in care for families with children ages 3 to 21 who are dealing with fecal incontinence caused by constipation, a common but poorly managed problem in some patients with pelvic anomalies. “We’re already getting referrals from as far away as Montana and Alaska,” Avansino notes.
While reconstructive surgery can correct many anomalies, some patients continue to experience constipation. Stool builds up until it overwhelms their colon and they have an uncontrolled bowel movement.
Lack of bowel control doesn’t always register with parents as an immediate problem because most surgery occurs when children are infants. “All babies are in diapers, right?” Avansino says.
The problem comes when children are 3 or 4 or 5 or even older and still unable to control their bowels. “By that time, families may be lost to follow-up. No one is managing their care and families don’t know what to do,” Avansino says. “We see some kids who’ve been living with fecal incontinence for years.”
The bowel management treatment program has been nearly 100% successful in helping families develop a plan (involving diet, laxatives and enemas) that enables patients to empty their bowels daily so they don’t have to wear diapers or fear uncontrolled bowel movements.
“Many families have tried some of these things on their own, but finding the right mix of therapies is difficult without the help and support of a structured program,” says registered nurse practitioner Jennifer Kreiss.
Opening a new world
The plight of an 8-year-old patient who was wearing diapers to school and changing herself whenever she had an accident was a tipping point in Avansino’s decision to establish the bowel management treatment program.
“Helping a child control their bowel opens a whole new world for them and their families because it gives them control over their lives,” Avansino says. “There’s nothing I do as a doctor that’s more rewarding than helping families with fecal incontinence.”
“Families don’t know what to do. We see some kids who’ve been living with fecal incontinence for years.”
– Dr. Jeffrey Avansino