Children's: The
hub for CUB
Socially speaking, urine and bowel incontinence can be among
the most difficult things for a child to face, and medically speaking,
it can be a complex issue to treat. The Children's Hospital Boston
Continence of Urine and Bowel (CUB) Program is taking a multidisciplinary
approach to treating incontinence resulting from congenital anomalies,
such as anorectal, spinal, neuromuscular or urologic malformations,
or coordinated medical and surgical interventions.
The CUB Program was established about three years ago to coordinate
the complex care needs of children, who are often under the care
of many specialists at one time. Patients are seen by physicians,
nurse practitioners, and nurses from the Departments
of Gastroenterology, General
Surgery, Neurosurgery
and Urology.
They meet collectively to assess, diagnose, and evaluate the children,
and create a plan of care to share with their families. Other
departments, such as Behavioral Medicine, Radiology
and Orthopaedics,
are frequently consulted.
"The primary advantage of CUB has been that it provides
multidisciplinary care in an efficient way," says Samuel
Nurko, MD, MPH, assistant in Gastroenterology, who
is one of the program's founders, along with Stuart
Bauer, MD, and Joseph
Borer, MD, of Urology, Steven
Fishman, MD, of Surgery, and Mark
Proctor, MD, of Neurosurgery.
"Each patient is evaluated by the team of specialists during
one visit, providing an opportunity for the team to discuss the
child's condition and implement a multi-faceted plan," adds
Nurko. "This way, there is no back and forth among the clinicians,
as is often the case when a child has complex care needs."
Taunton, Mass. resident Carolyn Camara certainly knows the advantages
of bringing her 8-year-old son, Sean, in for a single visit. He
was born with an imperforate anus (the absence of a normal anal
opening) and additional urological problems. He underwent several
corrective surgical procedures, including a colostomy, a reconstruction
of the anus, a reconnection of the large intestine, bladder surgery
and an appendicostomy—a new surgical intervention that allows
for the administration of antegrade enemas, and has revolutionized
the care of this patient population. Sean has been coming to CUB
since its inception, and has improved tremendously.
"We take things day by day, but Sean really is doing great,"
says Carolyn. "It's so nice to be here one time for all of
his check-ups. And the doctors and nurses are excellent, seeing
Sean and answering my many questions. We've definitely had a very
positive experience with the program."
Carolyn has also had the opportunity to meet other parents through
the program. "We've found that it really helps families to
meet other people who have been through the same issues,"
says Sandy Quigley, CWOCN, CPNP, an enterostomal
therapy nurse in the CUB Program. "They can offer a real-life
perspective that just isn't captured in a pamphlet or on the Internet."
Patients and their families currently come to CUB from across
New England, the United States and even worldwide, often as the
result of a referral or to seek a second opinion. "We offer
state-of-the-art evaluation that includes the latest technologies
for diagnostic tests and treatment options," says Dr. Bauer.
"And I think it's safe to say that we are the only pediatric
institution in the nation that offers all of this with a multidisciplinary
team consulting on each patient. Our approach has clearly improved
the lives for many children and their families."
Despite being on the cutting edge of incontinence treatment,
the CUB team is always looking to improve the quality of care
they provide their patients, and is currently conducting quality
of life and clinical research. "Because of the malformations
in these children, the mechanisms for normal functioning are often
injured, which is not an easy thing to amend," says Dr. Nurko.
"CUB currently improves social continence in most patients,
with at least 80 to 85 percent achieving full continence and independence.
But ultimately, our goal is to improve the health of all the children
we serve."
The CUB Program currently meets the third Thursday of every month,
with Jodi Santosuosso, APRN, BC, NP-C, a nurse
practitioner in Gastroenterology, serving as the first point of
contact for patients and their families. She coordinates all patient
activity, scheduling appointments, following up with the families
and arranging monthly clinics. "It's nice to have everyone
in one room to go over each case and provide their input for the
plan of care," she says. "Not only do we all work very
well together, but the result is the best possible care plan for
the child."
"CUB truly helps keep children with complexities from falling
through the cracks," adds Rosemary Grant, RN,
of Urology. "With so many clinicians reviewing each child's
records and talking to the family, we really ensure the highest
level of care."
