How to Help Pediatric Patients Self-Manage IBD

Maureen Kelly:

Hi, my name is Maureen Kelly.  I’m a nurse practitioner from University of North Carolina at Chapel Hill, and I’m here today to talk about self-management for pediatric patients with inflammatory bowel disease. 

Self-management for patients with inflammatory bowel disease is described as the daily activities that they must perform to keep their disease under control, minimize the impact of IBD on their physical health and functioning and cope with any comorbid or psychological symptoms.  What I’m going to talk about is 3 key components needed to promote self-management in pediatric patients with IBD, some self-management skills for pediatric patients with IBD, and ways that the advanced practice provider can provide self-management skills.

There are 3 key components for successful pediatric IBD self-management They include knowledge about the diagnosis, knowledge about medications prescribed, and development of self-management skills.  Just because our patients have knowledge about their diagnosis and prescribed medications does not necessarily lead to development of self-management skills.  Sometimes I have patients who do really well with their knowledge level, but they don’t have the maturity level to take care of themselves independently.

Through ongoing education and anticipatory guidance as advanced practice providers, we can improve our patients’ knowledge of their disease or diagnosis. It is important that pediatric IBD patients, as age and developmentally appropriate, and their parents know about their type of inflammatory bowel diseasethe location of their disease and the character of their disease.  Knowing this information helps to guide medical management, serve as a means to clearly identify the nature of the IBD, improve communication about thedisease between healthcare providers, assist providers to monitor for complications from IBD, and recognize changes in our patients IBD over time.

Through ongoing education and anticipatory guidance, we can improve our patients’ knowledge, as age and developmentally appropriate, what medications they’re taking, the dose they’re taking, when they take it, the need to understand possible side effects and interactions with other medications, alcohol and drugs. If they’re using enteral therapy, an understanding of the recommendations, its effects and protocol should be known.  The names of therapies or medications previously tried and failed can help to guide further management. This information is critical, not only for self-management but for eventual transition to adult care.

Self-management promotes self-efficacy and problem-solving.  As advanced practice providers, we can assist pediatric IBD patients to achieve self-management skills by helping them improve their knowledge and skills by providing education that includes learning about IBD, taking on and adjusting to new responsibilities or skills, taking medications as prescribed, what we call adherence.  We can help them to promote wellbeing through providing anticipatory guidance for maintaining a healthy lifestyle with diet and nutrition, exercise and stress management.  We can offer education and anticipatory guidance that enables them to, first of all, recognize the signs of a flare and know how to manage flares.

So, how do we improve knowledge and skills? Improving knowledge and skills of pediatric IBD patients can be incorporated in general healthcare visits. This is facilitated through health education, anticipatory guidance, fostering independence at age-specific and developmentally appropriate timelines.  The advanced practice provider plays an important role in the process of gradual movement toward self-care in adulthood.

Among the elements for living a healthy lifestyle are the importance of diet and nutrition, exercise and stress management. It is important for our patients to know what a balanced diet consists of, what they should limit and what and when they should avoid certain foods.  We try to have our patients regularly meet with the dietician so they have this understanding. Educating our patients about the importance of exercise as a part of general health is also important.  We do not want our patients to use IBD as an excuse for not exercising. Lastly, helping our patients to develop skills to management stress is critical for their success and wellbeing no matter what their age.  Recognizing signs of depression and anxiety and making a prompt referral is critical.  This should be done on a regular basis, at least annually.

Educating our patients on recognizing the signs of a flare can assist them in self-efficacy and self-management as a vital member of our IBD healthcare team.  I’m not going to cover all the details in this in the next slide regarding recognizing and treating a flare, but this is something that we work on consistently with our patients, and you can do this as well.  Important for your patients to know is when to pay closer attention to symptoms and when to call the provider. 

Educating our patients on treating a flare is equally as important as recognizing a flare.  Maintaining health is always the goal, but if they’re having a flare, they need to have an idea of when to call the provider and how to treat it.  Empowering them with some level of decision-making is essential.  Knowing when to call for help is critical.

In conclusion, self-management is the monitoring of illness while maintaining a satisfactory quality of life.  It is dynamic, daily and interactiveOur patients are dependent on others, be it family, community or healthcare providers, to help them manage symptoms, treatments, lifestyle changes and consequences of their health condition.  By empowering our patients with support, knowledge and self-management skills, we can enable them to live with IBD, lead a healthy lifestyle and successfully transition to adult care.

Thank you for joining me today. For more information, visit the Crohn’s and Colitis Foundation website at www.crohnscolitisfoundation.org. There you will find resources on self-management for both providers and patients.