Children's Hospital Colorado

Analysis of Patient and Family Psychosocial Functioning in Colorectal Conditions

Colorectal and Urogenital Care | November 15, 2021

Points for Parents:

  • Children with anorectal malformations, Hirschsprung disease, chronic constipation of an unknown cause and spina bifida often require bowel management.
  • Children’s Colorado researchers studied the stress level and behavioral functioning of patients and caregivers at the beginning of their participation in a bowel management program.
  • Parents/caregivers of children with chronic constipation of an unknown cause were at greatest risk for high stress levels.

Points for Providers:

  • Idiopathic constipation causes the most parental stress of the conditions evaluated in this study of bowel management program participants.
  • Diagnosis significantly influences parental stress and behavioral concerns; gender and presence of developmental delays are also influencers.
  • Tailored psychosocial support based on research findings could improve care for patients and families.

Stats:

  • 2-year study duration
  • 49.5% of patients in the bowel management programs had an anorectal malfunction
  • 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
  • Gender
  • Race
  • Ethnicity
  • Primary spoken language
  • Colorectal diagnosis
  • Presence of developmental delay

Research results: BMP program participant findings

colorectal-psychosocial-graphic-1.jpg

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.

colorectal-psychosocial-graphic-2.jpg

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.

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