With Bowel Disease, Parents' Anxiety Worse Than Children's

INDIANAPOLIS – Parents of children with inflammatory bowel disease perceive the effects of their children's illness more intensely than do the children themselves, according to Carin L. Cunningham, Ph.D.

“Treating physicians need to be aware of how the parents of children with inflammatory bowel disease are managing, because parental anxiety increases the child's anxiety,” Dr. Cunningham said during a poster session at the annual meeting of the Midwest Society for Pediatric Research.

Parents fret that their children may not lead normal lives or participate in normal activities, or that they may not be able to start a family of their own, Dr. Cunningham said in an interview.

“These concerns are most prevalent among parents who do not have IBD themselves,” explained Dr. Cunningham, a pediatric psychologist at the Rainbow Babies and Children's Hospital and Case Western Reserve University in Cleveland.

The study examined the health-related quality of life (HRQOL) of children and adolescents with inflammatory bowel disease (IBD), compared with the HRQOL of physically healthy peers, with emphasis on the effects of IBD and steroidal side effects.

The HRQOL scores of 49 children and adolescents (aged 10–18 years) with IBD and their parents, who completed the Child Health Questionnaire, were compared with those of healthy children.

“To our knowledge, this is the first study to describe the impact of IBD on HRQOL based on both a standardized measure and a controlled comparison of U.S. children and adolescents with IBD and physically healthy [peers] who were recruited from the same setting,” Dr. Cunningham and her associates said.

There are alternative interpretations of the discrepant findings between parent versus child reports of the impact of IBD on HRQOL, according to the investigators. “It is possible that children and adolescents with IBD are coping relatively well with the stressors of their condition and are not experiencing a significant impact of IBD-related problems on their HRQOL.”

Another possibility is that young people may deny or minimize the impact of IBD.

The study also found that:

▸ Caregivers of children with IBD reported that their children's physical and psychological health was more limited and that they experienced more worry and greater interference with their personal time, compared with caregivers of healthy children.

▸ Children and adolescents with IBD reported worse HRQOL than physically healthy children in only one domain, that of general health.

▸ Limitations in HRQOL were greatest in children who experienced more frequent IBD-related symptoms together with symptoms of steroidal side effects.

This suggests that children on steroids suffer the most, Dr. Cunningham said. “They become cushingoid, they gain weight, and often there's acne or stretch marks. This results in a lot of teasing from other kids, and these patients tell me they would rather have the pain of the illness than deal with the side effects of steroid medications.”

“Guidance counselors in Cleveland-area schools told me that kids will talk about their sex lives and drug use, but they won't open up about IBD, which is a bathroom issue,” she added.

INDIANAPOLIS – Parents of children with inflammatory bowel disease perceive the effects of their children's illness more intensely than do the children themselves, according to Carin L. Cunningham, Ph.D.

“Treating physicians need to be aware of how the parents of children with inflammatory bowel disease are managing, because parental anxiety increases the child's anxiety,” Dr. Cunningham said during a poster session at the annual meeting of the Midwest Society for Pediatric Research.

Parents fret that their children may not lead normal lives or participate in normal activities, or that they may not be able to start a family of their own, Dr. Cunningham said in an interview.

“These concerns are most prevalent among parents who do not have IBD themselves,” explained Dr. Cunningham, a pediatric psychologist at the Rainbow Babies and Children's Hospital and Case Western Reserve University in Cleveland.

The study examined the health-related quality of life (HRQOL) of children and adolescents with inflammatory bowel disease (IBD), compared with the HRQOL of physically healthy peers, with emphasis on the effects of IBD and steroidal side effects.

The HRQOL scores of 49 children and adolescents (aged 10–18 years) with IBD and their parents, who completed the Child Health Questionnaire, were compared with those of healthy children.

“To our knowledge, this is the first study to describe the impact of IBD on HRQOL based on both a standardized measure and a controlled comparison of U.S. children and adolescents with IBD and physically healthy [peers] who were recruited from the same setting,” Dr. Cunningham and her associates said.

There are alternative interpretations of the discrepant findings between parent versus child reports of the impact of IBD on HRQOL, according to the investigators. “It is possible that children and adolescents with IBD are coping relatively well with the stressors of their condition and are not experiencing a significant impact of IBD-related problems on their HRQOL.”

Another possibility is that young people may deny or minimize the impact of IBD.

The study also found that:

▸ Caregivers of children with IBD reported that their children's physical and psychological health was more limited and that they experienced more worry and greater interference with their personal time, compared with caregivers of healthy children.

▸ Children and adolescents with IBD reported worse HRQOL than physically healthy children in only one domain, that of general health.

▸ Limitations in HRQOL were greatest in children who experienced more frequent IBD-related symptoms together with symptoms of steroidal side effects.

This suggests that children on steroids suffer the most, Dr. Cunningham said. “They become cushingoid, they gain weight, and often there's acne or stretch marks. This results in a lot of teasing from other kids, and these patients tell me they would rather have the pain of the illness than deal with the side effects of steroid medications.”

“Guidance counselors in Cleveland-area schools told me that kids will talk about their sex lives and drug use, but they won't open up about IBD, which is a bathroom issue,” she added.

INDIANAPOLIS – Parents of children with inflammatory bowel disease perceive the effects of their children's illness more intensely than do the children themselves, according to Carin L. Cunningham, Ph.D.

“Treating physicians need to be aware of how the parents of children with inflammatory bowel disease are managing, because parental anxiety increases the child's anxiety,” Dr. Cunningham said during a poster session at the annual meeting of the Midwest Society for Pediatric Research.

Parents fret that their children may not lead normal lives or participate in normal activities, or that they may not be able to start a family of their own, Dr. Cunningham said in an interview.

“These concerns are most prevalent among parents who do not have IBD themselves,” explained Dr. Cunningham, a pediatric psychologist at the Rainbow Babies and Children's Hospital and Case Western Reserve University in Cleveland.

The study examined the health-related quality of life (HRQOL) of children and adolescents with inflammatory bowel disease (IBD), compared with the HRQOL of physically healthy peers, with emphasis on the effects of IBD and steroidal side effects.

The HRQOL scores of 49 children and adolescents (aged 10–18 years) with IBD and their parents, who completed the Child Health Questionnaire, were compared with those of healthy children.

“To our knowledge, this is the first study to describe the impact of IBD on HRQOL based on both a standardized measure and a controlled comparison of U.S. children and adolescents with IBD and physically healthy [peers] who were recruited from the same setting,” Dr. Cunningham and her associates said.

There are alternative interpretations of the discrepant findings between parent versus child reports of the impact of IBD on HRQOL, according to the investigators. “It is possible that children and adolescents with IBD are coping relatively well with the stressors of their condition and are not experiencing a significant impact of IBD-related problems on their HRQOL.”

Another possibility is that young people may deny or minimize the impact of IBD.

The study also found that:

▸ Caregivers of children with IBD reported that their children's physical and psychological health was more limited and that they experienced more worry and greater interference with their personal time, compared with caregivers of healthy children.

▸ Children and adolescents with IBD reported worse HRQOL than physically healthy children in only one domain, that of general health.

▸ Limitations in HRQOL were greatest in children who experienced more frequent IBD-related symptoms together with symptoms of steroidal side effects.

This suggests that children on steroids suffer the most, Dr. Cunningham said. “They become cushingoid, they gain weight, and often there's acne or stretch marks. This results in a lot of teasing from other kids, and these patients tell me they would rather have the pain of the illness than deal with the side effects of steroid medications.”

“Guidance counselors in Cleveland-area schools told me that kids will talk about their sex lives and drug use, but they won't open up about IBD, which is a bathroom issue,” she added.