Center for Pediatric Inflammatory Bowel Disease

Clinical Studies: Quality of Life

Inflammatory Bowel Disease (IBD) in Children Five Years of Age and Younger, a Diagnostic Dilemma

A.E. Christian, G.W. Telega, P. Mamula, J.E. Markowitz, D.A. Piccoli and R.N. Baldassano

Background

Clinicians are increasingly aware that inflammatory bowel disease (IBD) can affect all age groups, although incidence of this disease in infants and young children has not been well documented. The diagnosis of a specific type of IBD is very challenging in this age group.

Aims

To evaluate diagnoses and assess the usefulness of serology and presenting symptoms in IBD patients five years of age or younger.

Methods

Medical records were retrospectively reviewed in patients diagnosed with IBD at The Children's Hospital of Philadelphia between 1984-1999. The criteria included clinical, endoscopic, histologic and radiologic evidence of IBD. Patients were divided in four categories: Crohn's disease (CD), ulcerative colitis (UC), indeterminant colitis (IC) and microscopic colitis (MC).

Results

Seventy patients fulfilled the criteria and were included in the study. Twenty-eight patients were diagnosed with CD, 18 with UC, 13 with IC and 6 with MC. The majority of patients initially diagnosed with CD and UC (90 and 82%, respectively) maintained that diagnosis upon followup (1-15 years). However, thirty-three percent of patients initially diagnosed with IC were ultimately changed to CD. None of the patients with MC progressed to UC or CD. Most common presenting symptoms were diarrhea, abdominal pain and rectal bleeding. None of these symptoms were significantly prevalent in any specific disease group (CD, UC, or IC). Failure to thrive (FTT) was more frequent in CD (43%) and IC (37%) as opposed to UC (5%). Nine patients diagnosed with CD had a negative result for the anti-Saccharomyces cerevisiae antibodies (ASCAs). Therefore, sensitivity of the test is 0% for CD in this population of young patients. Seven of the eighteen patients diagnosed with UC had a positive result for the perinuclear (p) antineutrophil cytoplasmic antibodies (ANCAs), yielding a sensitivity of only 47%.

Conclusions

  1. CD is the most common form of IBD in this age group.
  2. IC often progresses to CD, not UC.
  3. MC does not seem to progress to either CD or UC.
  4. The antibody panel for Crohn's disease seems to have little clinical relevance in terms of providing definitive diagnostic information in this population of patients.

Submitted-AGA abstracts. May 2000

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Assessment of the relationship between coping style and quality-of-life in pediatric inflammatory bowel disease patients

S.B. Isenberg, A.E. Christian and R.N. Baldassano

Background

Very few studies have examined the ability of children to cope with long-term illness. Research on chronic disease in adults has found a direct relationship between depressive coping (i.e. self-criticism and blaming others) and poor quality of life. A child's perceptions of her/his ability to modify a stressor, including pain, altered physical appearance, etc. may influence the coping strategies s/he uses. If ineffective coping strategies are used, one's ability to function normally (i.e., quality-of-life) may be negatively affected.

Aim

To investigate the coping strategies and quality-of-life of child and adolescent patients with CD.

Methods

Children seen at the outpatient gastroenterology clinic at The Children's Hospital of Philadelphia between the ages of 8 and 18 years of age were included in the study. All subjects had CD documented by endoscopic and/or radiologic methods. All patients completed the Kidcope questionnaire in order to be placed in a particular coping style group, either positive/approach or negative/avoidance. The IMPACT questionnaire was administered, and the score was directly related the patient's quality of life (0 [worst] to 330 [best]). Objective measures including the Physicians Global Assessment and Pediatric Crohn's Disease Activity Index were also done at the time of patient visit. One-way ANOVA and Student's t-test (two-tailed) were performed to examine the relationship between coping strategies, quality-of-life, and disease severity.

Results

All of the patients in this study exhibited good to excellent quality of life (mean=219.07+/-146.21). There was no significant predisposition to a particular coping strategy in this population. Also, there was no significant difference between coping style (either positive or negative) and quality-of-life in this population of patients (F=0.8556, df=3, ns). Of the patients who were placed in the negative/avoidance coping group, most exhibited avoidance behaviors such as distraction (88%) or wishful thinking (88%). Positive coping behaviors that were prevalent among the patients were cognitive restructuring (76%) and problem-solving (72%). It is important to note that a small percentage of patients exhibited the negative coping behaviors of self-criticism (8%) or blaming others (16%).

Conclusions

Since all of our patients enjoy a good quality of life and few exhibit negative coping behaviors, a developmental component to coping is suggested. Adults' long-term experience with their chronic disease may lead to the development of ineffective coping strategies. If children can be taught effective strategies of coping, their quality of life may remain high throughout the adult years. Submitted-AGA abstracts May 2000

This research project has been granted full approval by the Institutional Review Board for the Protection of Human Subjects at The Children's Hospital of Philadelphia and the researchers are actively recruiting patients for participation.

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Health related quality of life improves in children and adolescent IBD patients attending IBD camp

L.B. Hurd, M.A. Shepanski, J.E. Markowitz, K.L.Culton, M. Check, S.N. Peck, A. York and R.N. Baldassano

Purpose

To describe the reported Health Related Quality of Life (HRQOL) in children and adolescents with Inflammatory Bowel Disease (IBD) after attending IBD summer camp.

Methods

A prospective analysis of quality of life was completed at a Crohn's and Colitis Foundation of America sponsored overnight camp, exclusively for patients with IBD. The IMPACT-35 Questionnaire was administered to the campers at the beginning and at the end of camp to assess HRQOL. The IMPACT-35 questionnaire consists of 35 questions measuring six quality of life domains (IBD symptoms, systemic symptoms, emotional functioning, social functioning, body image, and treatment/interventions). Analysis of individual domains was performed using paired-samples t-tests.

Results

71 patients (14 male, 47 female; ages 9 to 16) completed the IMPACT-35. 47 patients had Crohn's disease, 24 had ulcerative colitis. There was statistically significant improvement between re (M=247.1+/-52.3) and post camp scores (M=255.3+/- 58.5) (p=.035). Paired sample t-tests also revealed significant increases in social functioning (n=67, p=.041), body image (nn=71, p=.029), and treatment interventions (nn=69, p=.002).

Conclusions

Overall health-related quality of life improves in children after attending IBD summer camp. Contributing factors for these improvements may be an increase in social functioning, better body image, and less distress regarding treatment interventions, suggesting that a camp specifically designed for children with IBD may normalize the chronic illness experience.

Accepted for poster presentation at AGA Digestive Disease Week May 2003, Orlando, Florida

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Quality of life assessment in pediatric inflammatory bowel disease patients receiving infliximab therapy

L. Hurd, M.Shepanski, S. Peck, A. York, K. Culton, M. Check, A. Zimmerman, L. Sargent-Harkins, S. Wood-Hill, M. Niberle, V. Morgan, J.E. Markowitz, P. Mamula, R. Baldassano and the nursing staff of the Kohl's GI and Nutrition Diagnostic Center, The Division of Gastroenterology and Nutrition, The Children's Hospital of Philadelphia, Philadelphia, PA

Purpose

To describe the reported quality of life of pediatric patients with inflammatory bowel disease (IBD) who receive infliximab therapy.

Methods

A prospective analysis of quality of life measurement was completed at the Center for Pediatric IBD at The Children's Hospital of Philadelphia utilizing the Impact 35 Questionnaire. The questionnaire consists of 35 questions measuring six quality of life domains (IBD symptoms, systemic symptoms, emotional functioning, social functioning, body image, and treatment/interventions) and utilizes a visual analog scale to report the patient's answers. Responses are measured (from 0 to 10 cm) using a ruler and summed to give a total score (range 0 to 350); higher scores representing better quality of life. Data was collected from initial questionnaires completed by patients at the time of infliximab infusions.

Results

49 patients (26 male, 23 female ages 9 to 22) were included in the analysis. 42 patients had Crohn's disease and 7 had ulcerative colitis. Total scores ranged from 134.0 to 325.5 (mean 237.26, standard deviation 51.84), indicating these patients experienced, on average, a favorable quality of life. A normal distribution was demonstrated for all of the domains except for emotional functioning, which was skewed in the direction of poor emotional functioning. Questions related to emotional functioning dealt with concerns regarding chronic disease, such as future health, the impact of disease relapse, and feelings associated with their illness such as anger and shame.

Conclusions

This study demonstrates that the Impact 35 questionnaire can be utilized to assess the quality of life of pediatric IBD patients. In our patient sample, emotional functioning was significantly impaired, despite good quality of life as measured by other domains. These results suggest that further research is needed to understand the extent of emotional dysfunction experienced by pediatric patients with IBD and where to focus future interventions and support.

Presented at the 15th Annual NASPGHAN, APGNN meeting October 24-27, 2002, San Antonio, Texas.

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