Importance of education and the role of the patient and family in the care of anorectal malformations.

During this early part of the 21st century online technology has prompted many major advances in medical care. In this section we argue that this is particularly evident in the treatment and care of patients born with Anorectal Malformation (ARM) and Hirschsprung's Disease (HD). Our stories show that anyone born with these complex colorectal conditions in the 20th century was destined to a life of isolation and stigma. Here we explore the lack of understanding and recognition of the psychological effects on children and families which has characterised this period. We show that advances in clinical practice has been supported by developing social media platforms. There has been a rapid creation of online support groups for patients and families which has enabled survivors' greater access to patient and parent organizations across the globe and thereby stimulated a sense of belonging and solidarity. Online technology and social media platforms have also opened up the opportunity for pediatric medical professionals to provide a greater level of patient education. There is no doubt families have become much more aware of the complexities of ARM & HD and achieved greater comfort and understanding of their needs. We have generated "lightbulb moments" for pediatric providers with adult ARM & HD patients, enabling them to share their lived experiences in a therapeutic exchange. In the past survivors felt they were abandoned by the adult healthcare system. We are seeing evidence-based research of major psychosocial issues experienced by adult patients and, as a result, improved understanding of how to treat ARM & HD survivors across their whole of life journey. The winds of change continue to direct our cohorts to a mature approach based on improving levels of interactive communication and education. We argue that this maturity has mostly been facilitated by the use of online technology and the ensuing collaboration between providers and patient and parent organizations.

Factors Predicting Complications After Sacral Neuromodulation in Children.

OBJECTIVE: To identify if any preoperative variables are associated with postoperative complications after pediatric sacral neuromodulation (SNM). MATERIALS AND METHODS: A review of all patients undergoing SNM with an implantable pulse generator at our institution was performed. Postoperative infection, lead migration, lead breakage, and need for reoperation were recorded in a prospective database. We collected demographic information and indication for the procedure. We defined indication for procedure as either primarily bowel or primarily bladder symptoms. Multivariate analysis was used to determine any associations between preoperative factors and postoperative complications. RESULTS: Sixty-three children (34 females, 29 males) underwent SNM from 2012 to 2015. Mean age was 11.5 years, and body mass index (BMI) was 51st percentile for age. SNM was placed for primarily bowel symptoms in 49% and for primarily bladder symptoms in 51%. Follow-up was 1.9 years (0.19-4.3). Reoperation was required in 25%, with mean time to reoperation of 10.9 months (0.9-31.5). Lead migration occurred in 17.4%, and wound infection in 8%. There were no significant associations between patient age, gender, or BMI, and need for reoperation, wound infection, or lead migration. Low BMI had no increased risk of lead complications (P = .115). There was a significant increase in lead migration in the children who underwent SNM for primarily bladder symptoms (P = .0034). CONCLUSION: There is no association between age, gender, or BMI and postoperative complications in this large cohort of pediatric SNM. Children with primarily bladder symptoms may have higher rate of lead complications for unclear reasons.