A recent study (J Pediatr 2015; 166: 85-90, editorial 11-14) finds that children with functional gastrointestinal diseases (FGID) had more impaired “quality of life” than children with organic gastrointestinal diseases. For those of us taking care of these children, this finding does not come as a surprise, but there is a lot to learn from this study nonetheless.
Using the Pediatric Quality of Life Inventory 4.0 Generic Core Scales, the authors completed a 9-site study with 689 families for patients with physician-diagnosed GI disorders including functional problems like irritable bowel syndrome and dyspepsia as well as organic diseases like Crohn’s disease and ulcerative colitis. These patients were compared with a healthy control sample of 1114 families.
In addition to obtaining health-related quality of life (HRQOL) data, the authors reported information on school days missed, days in bed, parent missed workdays, and healthcare utilization.
- FGID and organic GI diseases demonstrated lower HRQOL than healthy controls across all measures (emotional, physical, social, and school; P<0.001 for all) with larger effect sizes for FGID.
- FGID and organic GI diseases also had more school days missed, days in bed, parent missed workdays, and healthcare utilization, again with larger effect sizes for FGID.
The associated editorial tries to work through the reasons why the impact of FGID is greater than an organic disease.
The authors hypothesize that two factors play a big role:
1. Issue of control:
- FGID -the cause is less evident
- FGID -very few effective treatments
- These factors may contribute to families feeling helpless and ‘out of control’
2. Issue of response shift:
- The authors explain that response shift indicates a circumstance in which a “patient is compelled to adjust to this new reality.”
- Response shift often involves a change in expectations
- Response shift often involves a change in prioritization
- Thus, response shift could explain why patients with organic GI disease have higher quality of life scores.
In addition, the authors note that with many FGID, that physicians often “suspect constipation is the cause…when laxative therapy is not helpful, this leads to more frustration.” They advocate shifting the focus for these families from “finding a cure to managing day-to-day symptoms.”
In my view, there are a lot of other factors at play that may help explain why HRQOL is lower in patients with FGIDs. This can include a high incidence of emotional disturbances (eg. anxiety, depression) and poor coping skills (eg. catastrophizing). This study also is another example showing that the physical severity of the medical disease does not correlate with the severity of the impact.
Related blog posts:
- Change the Name: “Functional” is Lousy | gutsandgrowth
- Anxiety and Functional Abdominal Pain | gutsandgrowth