- IBD —
- inflammatory bowel disease
- ICN —
- PAC —
- Patient Advisory Council
- QI —
- quality improvement
As patients (J.G.D. and A.J.) who have lived with pediatric-onset inflammatory bowel disease (IBD) since 12 and 9 years of age, respectively, and who underwent ostomy surgery at 19 and 15 years of age, respectively, we experienced a lack of psychosocial education about our surgeries. This negatively impacted our ability to adjust postoperatively to having an ostomy. For example, we had to learn how to explain our ostomies to friends and how having an ostomy might impact our clothing choices. The education we received about our ostomy surgery was brief and focused only on basic skills regarding caring for an ostomy, including changing and emptying the bag, but did not address concerns we had about living with ostomies as part of our everyday lives. This educational void placed the burden on us as patients to find resources on our own, decide if the information was appropriate, and determine if it was reliable and accurate.
In this article, we describe how we, as patients, harnessed the capacity of a collaborative chronic care network1 and were supported to develop a resource that patients needed.
The ImproveCareNow (ICN) Network is dedicated to improving the health and health care of children and adolescents with IBD. Formed in 2007, the network is presently composed of 107 pediatric IBD centers in the United States, Europe, and the …
Address correspondence to Jennie G. David, MS, Department of Psychology, Drexel University, 3141 Chestnut St, Stratton Hall, Office 215, Philadelphia, PA 19104. E-mail: