"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. Questions included demographics, patient and caregiver experiences with PAD, and baseline psychosocial functioning. Quantitative results were reported descriptively, while qualitative responses were summarized as major themes. RESULTS: The survey indicated a response rate of 26% caregivers, with most being female (91%) and biological mothers (85%). Patients were mostly male (65%), born with ARM (74%), and were five months old on average when PAD began. Caregivers reported that during PAD, children experienced distress (56%), pain (44%), and fear (41%), while a third noted no negative reactions. Over time, their child's ability to cope with PAD got easier (38%) or stayed the same (41%). Caregivers reported worry/anxiety (88%), guilt (71%), stress (62%), and frustration (35%), noting that additional coping strategies to manage the emotional and logistical challenges of daily PAD would be helpful. CONCLUSION: Although PAD is necessary, it can be highly stressful for the patients and their caregivers. Key findings emphasized the need for additional coping strategies and highlighted the importance of integrating psychosocial support into the postoperative care regimen.

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. RESULTS: Eighty patients were included. The average time with constipation was 5.6 years. Before our RS-BMP, 95% had received non-radiologically supervised treatments, and 71% had attempted two or more treatments. Overall, 90% had tried Polyethylene Glycol and 43% Senna. Nine patients had a history of Botox injections. Five underwent anterograde continence procedure, and one a sigmoidectomy. Behavioral disorders (BD) were found in 23%. At the end of the RS-BMP, 96% of patients had successful outcomes, 73% were on Senna, and 27% were on enemas. Megarectum was detected in 93% of patients with successful outcomes and 100% with unsuccessful outcomes (p = 0.210). Of the patients with BD, 89% had successful outcomes, and 11% had unsuccessful. CONCLUSION: Our RS-BMP has been proven to be effective in treating CIC. The radiologically supervised use of Senna and enemas was the appropriate treatment in 96% of the patients. BD and megarectum were associated with unsuccessful outcomes.

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 < 0.05. RESULTS: The response rate was 67%. All three surveys were completed by 133 adults with a slight preponderance of males (51%). Median age was 31 years, 117 were born with ARM and 16 with HD. All subgroups had significantly lower BFS than healthy references. ARM patients scored significantly lower than the healthy reference population when assessed for GIQoL. All showed significant impairment with the mental component summary (MCS) of SF-36. Patients with a successful bowel management had significantly higher scores on all three questionnaires than those with fecal accidents. CONCLUSION: Our results emphasize the importance of a successful bowel management and its impact on the quality of life and bowel function. Long-term follow-up is recommended with attention to mental health.

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). To better understand how and if these changes persisted, as well as other emerging trends, a follow-up study examined changes and challenges six months into the pandemic. An anonymous questionnaire assessed topics related to pediatric CL psychology including practice changes, perception of changes, and institutional support. The questionnaire was sent to the APA Society of Pediatric Society's special interest group listservs. Thirty responses were analyzed. Quantitative results showed participants' beliefs that telemedicine is equally efficacious to in-person services for outpatient psychological care, but less effective for inpatient care. Participants reported their perception of how institutions supported their safety, psychology trainee safety and training goals, and patient care. Qualitative results demonstrated that most psychologists experienced changes related to their dynamics with medical teams, which included changes in team efficiency, workload, transition, and team collaboration.

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). METHODS: A research registry of adult patients with colorectal conditions was developed. Items included demographics, medical diagnosis/treatment, and measures of anxiety and depression. Descriptive and inferential statistical approaches were applied to summarize data and determine significant differences in the average scores for depression and anxiety between various groupings of diagnoses, gender, race, and the use of psychotropic medication. RESULTS: Study measures were completed by 131 adults. Depression and anxiety scores were significantly higher for women than men and those self-identified as non-binary (p = 0.012, < 0.001, respectively). No significant differences in depression and anxiety scores were found due to colorectal diagnosis (p > 0.05). Participants who identified as Asian had significantly higher depression scores than participants of other races (p = 0.002); but no significant difference was noted for anxiety scores (p = 0.065). CONCLUSIONS: Results suggest that depression and anxiety scores were significantly influenced by gender and race. However, colorectal diagnosis was not a predictor of depression or anxiety. It is important for colorectal providers to be aware of the psychosocial implications of congenital colorectal conditions and consider how to provide adequate support to address patients' psychosocial needs.

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.

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. METHODS: A systematic study of Instagram, Facebook, and Twitter was performed using standardized search terms. Accounts with activity within the last year were included. Quantitative data were collected. Accounts were qualitatively assessed and assigned a functional category. Group differences were tested via Kruskal-Wallis test and Fisher's exact tests for continuous and categorical variables, respectively. RESULTS: A total of 96 Instagram accounts, 57 Twitter accounts, 49 Facebook pages, and 45 Facebook groups were identified. Accounts originated from 24 countries and the greatest number of accounts was created in 2013. The most common source of information on Instagram was from personal accounts (74.0%), on Facebook was from support groups (45.7%), and on Twitter was from health care providers (35.1%), (p < 0.001). The most common functional categories on Instagram were personal story (69.8%), on Twitter were scientific information/medical research (57.9%), and on Facebook were supportive/story sharing (47.8%), (p < 0.001). CONCLUSIONS: Social media serves as a source for medical information and allows for supportive communities for pediatric colorectal patients and their families to exist.

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.

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.

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). Survey items included demographics, medical diagnosis/treatment, school/workplace accommodations, mental health diagnosis/treatment, and life perspectives. RESULTS: Majority of respondents were female (73%), aged 25-34 years (31%), Caucasian (92%), US residents (60%), and attended public school (86%). 53% of respondents are currently employed. 32% of respondents received school-based accommodations and 24% at work. 58% of respondents had a mental health diagnosis, with depression (82%) and anxiety (81%) being the most common. CONCLUSIONS: Results suggest that adults with ARM experience ongoing difficulties related to schooling, employment, and mental health, in addition to medical complications. It is becoming increasingly clear that improving patients' physical well-being is not enough; psychosocial concerns must also be addressed directly. Thus, it is important for clinicians to be aware of and partner with psychosocial providers to support these challenges associated with ARM, to maximize patients' overall health and well-being.

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). We discuss the development and evolution of what we have come to call the "behind the mirror" method. We describe the therapeutic intent of the method and delineate 13 techniques utilized to enlist parents as active collaborators. We illustrate each technique using the case study of a 10-year-old boy where the 2-assessor model and live video feed method were used. We also provide research findings from the case study that address the parents' experience of the assessment and their changed view of their child.