- 2-year study duration
- 49.5% of patients in the bowel management program had an anorectal malformation
- 21% of participants had a developmental delay
Research background: bowel management programs for colorectal conditions
Often starting in childhood, conditions like anorectal malformations (ARM), Hirschsprung disease (HD), spina bifida and idiopathic constipation (IC) often result in fecal incontinence and fecal pseudo-incontinence.
Bowel management programs (BMP) offer personalized care plans to improve continence and quality of life for these patients. However, these conditions still have a significant psychosocial impact on the lives of patients and their families.
Research methods: psychosocial impact of colorectal conditions
Researchers in the International Center for Colorectal and Urogenital Care at Children's Hospital Colorado retrospectively studied patient and caregiver stress and behavioral functioning in a BMP to evaluate the clinical relevance of this impact.
Participants with colorectal conditions and fecal incontinence or severe constipation and their caregivers were selected based on participation in the Children’s Colorado Bowel Management Program between March 2018 and March 2020. The Parent Stress Scale (PSS) and the Strengths and Difficulties Questionnaires (SDQ) were used to assess psychosocial functioning in caregivers. Patients 11 years and older completed the SDQ-S child report.
Clinical data collected from previous clinical participation:
- Age at BMP participation
- Primary spoken language
- Colorectal diagnosis
- Presence of developmental delay
Research results: BMP program participant findings
Researchers noted language proficiency was a reason why some may have declined to participate.
Most BMT program participants:
- Identified as male (61.5%)
- Were white (73.5) or non-Hispanic (54.5%)
- Spoke English (90.4%)
- Did not have a developmental delay (79%)
The average age of BMP participants was 9 years old. There was a wide age range for those who submitted SDQ-S (11 to 74 years old), with an average age of 20 years old.
Psychosocial assessments revealed:
- Caregivers of patients with IC had significantly higher stress scores on the PSS (39.0) than all other conditions.
- High PSS scores were also reported for other colorectal.
- Patients with IC had high scores on the SDQ and SDQ-S in emotional, conduct and hyperactivity symptoms and relationship problems reported by their caregivers compared to patients with other conditions.
- Patients with a developmental delay had higher scores on the SDQ and SDQ-S in hyperactivity/inattention, peer relationship problems and prosocial behavior than peers without developmental delay.
- Boys had more significant conduct problems than girls.
Research discussion: significance of stress levels and behavioral concerns
Regardless of colorectal condition, caregivers reported significant stress levels compared to patients who did not have bowel incontinence problems – indicative of negative psychosocial impact.
Overall, the effects of having a colorectal condition or caring for someone who does impacts a person’s psychosocial well-being. Researchers recommended that families and patients with IC be referred to a BMP program as early as possible to receive support that could alleviate potential stress.
Research conclusions/clinical implication: relevance of psychosocial impact of colorectal conditions
Study authors recommended clinicians and BMP staff be aware of the negative psychosocial impact of living with or caring for someone with a colorectal condition. Encouraging participation in BMP programs can help mediate symptoms of stress and behavior problems.