Congenital Colorectal Conditions: Caregiver Perspectives of Their Experience in the Neonatal Intensive Care Unit.

Objective:  This study aimed to examine the experiences of children with colorectal conditions who spent time in the neonatal intensive care unit (NICU) and their caregivers.

Study Design:  In March 2024, a 36-question survey was sent to the Colorectal Support Network Facebook community, to gather information from caregivers of children who have a congenital colorectal diagnosis and spent time in the NICU.

Results:  Fifty-two families completed the survey.

Transanal proximal rectosigmoidectomy: a single-center experience in surgically treated severe medically refractory idiopathic constipation.

Purpose: To present the functional results after a transanal proximal rectosigmoidectomy in patients with severe idiopathic constipation in which medical treatment has failed.

Methods: Patients with severe idiopathic constipation who underwent transanal proximal rectosigmoidectomy (TPRS) at Children's Hospital Colorado between June 2019 and March 2024 were included in the study. We compared multiple pre- and post-operative outcome measures and the patient's bowel regimen before and after resection.

"Take It One Dilation at a Time": Caregiver Perspectives of Postoperative Anal Dilations in Pediatric Patients with Colorectal Conditions.

Background: Postoperative anal dilations (PAD) are the standard of care for patients after a posterior sagittal anorectoplasty (PSARP) for anorectal malformation (ARM) or a transanal pull-through (TP) procedure for Hirschsprung disease (HD). This study assessed the psychosocial impact of PAD among caregivers of children with ARM or HD, which may inform postoperative care strategies.

Methods: Caregivers of patients with ARM and HD who underwent PSARP or TP within five years participated in the online survey.

Gastrointestinal quality of life and bowel function in adults born with anorectal malformation and hirschsprung disease.

Purpose: To assess the quality of life and disease-specific functioning of adults with anorectal malformations (ARM) or Hirschsprung disease (HD) compared to healthy reference scores.

Methods: Patients with the diagnosis of ARM or HD from the Adult Colorectal Research Registry completed the Short Form 36 Health Survey (SF-36), the Gastrointestinal Quality of Life Index (GIQoLI), and the Bowel Function Score (BFS) between October 2019 and August 2022. One-sample Wilcoxon test compared the results to reported healthy references with a significance level of < 0.

Radiologically supervised bowel management program outcome in patients with chronic idiopathic constipation.

Purpose: This study aimed to analyze our radiologically supervised bowel management program (RS-BMP) outcomes in patients with chronic idiopathic constipation (CIC).

Methods: A retrospective study was conducted. We included all patients with CIC who participated in our RS-BMP at Children´s Hospital Colorado from July 2016 to October 2022.

Long-term outcomes of adult patients following surgery for congenital colorectal conditions: analysis of psychosocial functioning.

Purpose: This study aimed to obtain information about the psychosocial functioning of adults with various congenital colorectal conditions (e.g., anorectal malformation, Hirschsprung disease).

Pediatric Consultation-Liaison Psychology: Insights and Lessons Learned During the COVID-19 Pandemic.

COVID-19 has presented a variety of challenges to the provision of psychology services. In the first month of the pandemic, pediatric consultation-liaison (CL) psychologists reported significant changes in methodology of service delivery (Steinberg et al. in Clin Pract Pediatr Psychol 9:1, 2020).

The importance of dedicated colorectal team participation in the management of spina bifida and spinal cord injury patients.

Purpose: In September 2020, the colorectal team of the International Center for Colorectal and Urogenital Care joined the spina bifida and spinal cord injury multidisciplinary clinic at Children's Hospital Colorado. Many important lessons were learned.

Methods: A retrospective review of patients seen in the spina bifida and spinal cord injury multidisciplinary clinic from September 2020 to May 2021 was conducted.

Considering the value of online support groups for colorectal conditions: perspectives from caregivers and adult patients.

Purpose: To evaluate the benefits of participating in an online support group for caregivers of children with a colorectal condition or adult patients with a similar condition.

Methods: An electronic survey was administered to members of an international online support group (18 items for caregivers; 15 for patients). Items included demographics, medical diagnosis, potential benefits, and overall experiences in the group.

The use of social media among the pediatric colorectal community.

Purpose: Pediatric colorectal conditions require complex medical care and can require lifelong support. Caregivers often seek medical information on the internet. The aim of this study was to characterize the use of three social media platforms for information sharing about pediatric colorectal conditions.

A review of adopted colorectal patients: a parent's perspective.

Purpose: After treating many adopted patients with congenital colorectal conditions, our goal was to understand if parents were properly counseled about their child's medical needs before adoption.

Methods: A comprehensive questionnaire was developed. Recruitment occurred by social media and colorectal database.

Analysis of patients' and caregivers' psychosocial functioning in colorectal conditions: comparison of diagnosis, gender, and developmental functioning.

Purpose: To evaluate the psychosocial functioning of caregivers and patients with anorectal malformation (ARM), Hirschsprung disease (HD), spinal conditions, and idiopathic constipation (IC) during the beginning of participation in bowel management program (BMP).

Methods: In this retrospective study, Parent Stress Scale (PSS, parent-report) and Strengths and Difficulties Questionnaire (SDQ, parent-proxy; SDQ-S, self-report for 11 years and older) were used to evaluate parental stress levels and behavioral functioning, respectively. Descriptive and comparative statistical approaches were applied to summarize the data and to determine differences in scores between diagnoses, gender, and developmental functioning.

A survey of adults with anorectal malformations: perspectives on educational, vocational, and psychosocial experiences.

Purpose: Despite medical advances, individuals with anorectal malformations (ARM) experience significant medical and psychosocial challenges due to their complex conditions. This study aimed to obtain the perspectives of adults with ARM throughout their lifetime regarding their medical, school/vocational, and psychosocial functioning.

Methods: A 40-item survey was administered electronically to members of an international ARM Facebook group (56% response rate; n = 125).

Therapeutic assessment with children: intervening with parents "behind the mirror".

All the steps in the model of therapeutic assessment used with children (TA-C) are designed to involve and impact the child's parents. However, a distinctive process that parallels and accompanies the testing sessions with the child might be the most significant in helping parents shift their story of their child and family. In this process, parents are invited to observe their child's testing sessions (in an adjacent room through a live video feed, through a 1-way mirror, or in the corner of the testing room) and process the experience with the assessor (either simultaneously in the case of the 2-assessor model or after the fact in the 1-assessor model).