ICN Research Explained: Prevalence, Predictors, and Impact of Pain During the First Year after Pediatric Inflammatory Bowel Disease Diagnosis

Study Authors 

Lexa K. Murphy, David L. Suskind, Pingping Qu, Chuan Zhou, Kaltrina Gashi, Joy S. Kawamura, Tonya M. Palermo

Study Background 

Abdominal pain is a common symptom in pediatric inflammatory bowel disease (IBD). The majority of patients report pain at diagnosis and during recurrence, and some patients also report pain during disease remission. Previous research has shown that pain is associated with poorer quality of life in patients with IBD, making pain an important area of research.

However, previous studies have studied pain in small groups of patients with IBD, at a single point in time, often months or years after IBD diagnosis. Studying pain during the first 12 months after diagnosis would provide important information that can help develop guidelines for early screening for patients at risk for persistent pain as well as pain management interventions tailored for youth with IBD. The ImproveCareNow Network made this study possible by allowing our team to examine pain during the first year after pediatric IBD diagnosis in a large group of children and adolescents.

Study Overview 

We used the ImproveCareNow (ICN) registry to answer three questions:

• How common is pain during the first year after diagnosis?
• What factors increase risk for pain?
• How does pain impact quality of life?

We included patients in the ICN registry who were 8-18 years old at diagnosis and had enrolled in the registry up to the beginning of 2019.

We found that:

• The percentage of patients reporting abdominal pain within the first month after diagnosis was 56% and this decreased to 34% at 12 months after diagnosis.
• Patients with more severe disease, patients who were girls, and patients who had psychosocial risk factors were more likely to report pain during the first year after diagnosis.
• Even when considering disease severity, patients who reported pain were 9x more likely to report activity limitations and 5x more likely to report worse wellbeing.

In addition, we also found that the percentage of patients reporting pain since the beginning of the ImproveCareNow registry has not significantly declined over time from 2007 to 2019.

There are limitations to this study. Patients and families in the ICN registry were asked to rate pain, activity limitations, and wellbeing on scales that changed over time, so we had to simplify these variables to yes/no (for example, yes any pain, no pain). Ideally, we would want to study pain in more detail, for example using a 0-10 scale. In addition, we were limited to patients who had clinic visits during the first year after diagnosis. Our results may overestimate or underestimate the percentage of youth who have pain, as we do not know what is happening with youth who do not come in to see their doctor regularly during the first year after diagnosis.

Study Results - What does it all mean? 

These results help us understand how common pain is in pediatric patients with IBD, and who might be more likely to report pain. In addition, it tells us that pain has an important impact on patients’ quality of life. Our hope is that these results can be used to help develop pain management interventions that youth with IBD and their families can use to improve quality of life after IBD diagnosis.

Study status:

As of September 2020, this study has been accepted but is not yet published in a medical journal. Upon publication we will add it to our list of published research studies. You can view our community's published research by visiting our Publications page >>

Prepared by: Lexa K. Murphy

Reviewed by: Parent Working Group Research Subcommittee

About ICN Research Explained: We believe that in order to truly outsmart IBD, the questions we ask and the answers we find must be generated by and be useful to the people whose lives they will impact – patients and their families. ImproveCareNow (ICN) research is prioritized based on what matters most to patients and parents, and we are committed to sharing our results so everyone can understand and take advantage of what’s been learned. The ICN Research Committee has teamed up with the Parent Working Group Research Subcommittee to create and share parent-approved research summaries called “ICN Research Explained."

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