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. Quantitative results were summarized as descriptive trends, while qualitative responses were summarized thematically. RESULTS: Respondents (102 caregivers, 6 patients) were primarily female, 35-44 years old, Caucasian, and resided in the United States. Most respondents learned about the support group from medical providers or online search. Cited benefits included learning information, gaining support, forming connections through shared experience, and utilizing a unique resource. Being a member of the group was helpful to respondents, improved their mental health and access to health information, and they would recommend the group to others. CONCLUSION: Participation in online support groups offers educational and emotional benefits to patients/caregivers which complements the medical support from their colorectal teams. Thus, colorectal providers need to be aware of the availability and potential benefits of these groups, and encourage their patients/caregivers to be actively involved.

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. Data collected included demographics, diagnosis, pre or post-natal repair for those with myelomeningocele, whether the patient was previously seen by the colorectal team, wheelchair usage, voluntary bowel control vs. fecal incontinence, urinary control vs. clean intermittent catheterization, characteristics of contrast enema, and our proposed intervention. RESULTS: Overall, 189 children were seen during the study period, ranging from 3 months to 20 years of age (average = 9.5 years). One hundred and two were males and 87 were females. Diagnosis included myelomeningocele (n = 153), spinal cord injury (n = 18), transverse myelitis (n = 7), sacral agenesis (n = 5), diastematomyelia (n = 2), spinal stenosis (n = 2), and tethered cord with lipoma (n = 2). Fifteen patients with myelomeningocele were repaired in-utero. One hundred and sixty patients were new to the colorectal team. Eighty-one patients were wheelchair users. One hundred and twenty-three patients suffered from fecal incontinence and needed enemas to be artificially clean for stool and thirty-eight patients had voluntary bowel movements and were clean with laxatives, suppository, or rectal stimulations. Twenty-eight patients were younger than three years of age and still in diapers. Despite a non-dilated colon on contrast enema, this population has a hypomotile colon. One hundred and twenty-eight patients required clean intermittent catheterization. CONCLUSION: Joining the spina bifida and spinal cord injury multidisciplinary clinic allowed us to better serve this population and gave us enormous satisfaction to contribute to improve the quality of life of the patients and their parents. LEVEL OF EVIDENCE: III.

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. RESULTS: 48 parents participated. Adopted children were primarily male (60%), internationally adopted (75%), and a median age of 2.5 years (range newborn-13yo). While 96% of parents received medical records, 41% had incorrect/missing information. Most patients had an anorectal malformation (83%, Table 1), and a third had the primary pull-through prior to adoption (16). Nearly all required a surgical procedure after adoption (87%), including a redo pull-through (19%). Children were frequently incontinent of stool (83%) and urine (46%). In some families, the medical condition negatively affected the relationship between the parent and adopted child (12.5%), parent and other siblings (40.5%), and adopted child and other siblings (19%). 58% of parents state managing their child's medical condition was more difficult than anticipated. Family, friends, and the medical team was noted as the most helpful support systems. Table 1 Colorectal diagnoses Diagnosis Number of Participants Percentage (%) ARM (Unknown) 11 23 Cloaca 8 17 Cloacal Exstrophy 4 8 ARM No Fistula 3 6 Rectobulbar Fistula 3 6 Rectovestibular Fistula 3 6 Hirschsprung's Disease 3 6 Rectoprostatic Fistula 2 4 Spina Bifida 2 4 Rectoperineal Fistula 1 2 Rectovaginal Fistula 1 2 Rectobladderneck Fistula 1 2 Complex Malformation 1 2 Rectal Atresia 1 2 Rectal Stenosis 1 2 Idiopathic Constipation 1 2 Sacral Agenesis 1 2 Sacrococcygeal Teratoma 1 2 CONCLUSION: We strongly recommend putting support systems in place, obtaining as much medical information as possible, preparing for possible lifelong management, and consulting with a specialized colorectal team before adoption.

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. RESULTS: Two hundred patients and caregivers participated in BMP during the study period. PSS scores were significantly higher for caregivers of patients with IC than ARM. Statistical differences in SDQ were found for patients with IC versus those with ARM, male versus female patients, and patients with developmental delays versus those without delays. No significant differences were found in SDQ-S scores between these groups. CONCLUSION: Key findings suggest that level of parental stress and behavioral concerns were significantly influenced by diagnoses, and partly by gender and presence of developmental delay. Thus, psychosocial support may need to be tailored based on these findings to provide optimum quality of care for patients and families.

An overview of opioid usage and regional anesthesia for patients undergoing repair of anorectal malformation.

PURPOSE: The recent opioid crisis in the USA compelled us to evaluate our practice of opioid use for postoperative pain management and the influence of regional anesthesia on opioid requirement in patients undergoing repair of anorectal malformations. METHODS: A retrospective chart review was performed evaluating patients who underwent posterior sagittal anorectoplasty (PSARP) and posterior sagittal anorecto-vagino-urethroplasty (PSARVUP), with or without laparotomy, between January 2016 and March 2020. Morphine milligram equivalents per kilogram (MME/kg) were calculated. IRB approval was obtained for this study. RESULTS: A total of 105 surgical patients had either a PSARP (74 without laparotomy, 10 with laparotomy) or PSARVUP (13 without laparotomy, 8 with laparotomy). Regional anesthesia included epidurals, transversus abdominis plane block, caudal block or paravertebral catheters. Of the PSARP patients, 4 without laparotomy and 7 with laparotomy received regional anesthesia. For PSARVUP with laparotomy, 4/8 received regional. 44% of PSARP patients without laparotomy did not require opioids postoperatively. The MME/kg required exponentially increased for patients over the age of 5 who underwent PSARP. CONCLUSIONS: Regional anesthesia is a useful modality for pain control for PSARP/PSARVUP with laparotomy, decreasing the opioid usage, but it is unnecessary for the already low opioid requirements, in patients younger than 5 years of age, without laparotomy.