Gastrostomy tube placement for children with autism spectrum disorders and functional constipation

1 INTRODUCTION

Patients with autism spectrum disorder (ASD) often present for evaluation and treatment of functional constipation (FC).¹ While the prevalence of constipation in children with ASD varies, one study estimates that one in three children with ASD will present to primary care for management of constipation in the first two decades of life.² While most respond to standard recommendations and medical therapy, increasing severity of autistic behaviors is associated with worse outcomes compared to standard therapy.^{3, 4} In addition, children with ASD are more likely to present with a dilated, stool-filled rectum and to require admission for constipation compared to children without ASD.^{5, 6} Uncontrolled constipation can considerably impact quality of life in a child with ASD. In addition to increased emergency department visits and hospital admissions, chronic constipation can cause behavioral challenges.^{5, 7} Parents may report an association between constipation and its associated symptoms with poor school functioning, reduced eating, and sleeping issues in children with ASD. In addition, evaluation of colonic manometry in children with ASD indicates that in those with a longer duration of symptoms, there is a higher likelihood of impaired or absent motility in the distal colon, likely from years of stool retention.⁸

Although medical therapies for improving quality of life in children with constipation and ASD exist, concurring behavioral and sensory issues often present a challenge in implementing these therapies.³ FC and eating difficulties often occur together in children with ASD.² Although diet likely affects bowel pattern, the assumption that a low-fiber diet is the cause of FC may not be true.^9-12 In some patients, reducing fiber may improve FC, and fiber supplementation may worsen FC.^{11, 13} Focusing solely on dietary intervention is therefore unlikely to treat constipation successfully in children with ASD; success likely depends on the use of oral medications such as stool softeners and/or laxatives.^{14, 15} Unfortunately, abnormalities in eating and drinking often hinder the treatment of constipation in children with ASD. Feeding and drinking abnormalities are associated with a lack of adherence to other therapies such as psychotropic medications.¹⁶ Gastrostomy tubes (GTs) have been used in children with ASD to supplement nutrition in patients who have persistent malnutrition, and have been suggested as a potential solution for children with persistent FC refractory to prescribed oral medications.^{5, 17} GT placement is not a benign procedure, and complications such as early tube dislodgement may result in significant morbidity. However, the use of GTs for administration of oral laxatives and fluid administration for management of FC has not been previously studied.

We aimed to assess a series of patients with ASD undergoing GT placement for FC. Specifically, we aimed to compare symptoms before and after GT placement including constipation-focused symptoms, postoperative symptoms, and changes in constipation and medication-related quality of life.

2 METHODS

3 RESULTS

4 DISCUSSION

In this study, we show success in a single-center series of patients with ASD and FC undergoing GT placement for administration of bowel regimen, with improvement in bowel movement frequency, bowel movement consistency, associated symptoms, and constipation and medication-related quality of life. Importantly, there were no complications of early tube dislodgement, infection, or need for removal. We suggest GT can be considered for management of FC in children with ASD to improve symptoms when more conservative management has failed.

Constipation is a major pathology in patients with ASD. Manometric studies in children with ASD demonstrate that FC is the primary cause of constipation, like neurotypical children.⁸ However, if left untreated, chronic FC has been shown to result in loss of motility in the distal colon in children with FC and can result in increased utilization of medical resources and severely impacted quality of life.^{5, 8} Therefore, developing techniques to manage FC in children with ASD is extremely important. These techniques must balance sensory and behavioral challenges, especially with tolerance of oral medications.

Children with neurodevelopmental disorders such as ASD undergo GT placement for both nutrition and medical needs, and GTs for nutrition have been associated with improved quality of life due to the independence they can provide a family.²¹ In a cohort study of children with severe disabilities, placement of GT for nutrition also allowed for easier medication administration.²² However, this comes at the expense of concern for increased complications and need for maintenance of the GT, which may be more challenging in a child with ASD.²³ This must be balanced with the cost of persistent FC, which has both a substantial tangible cost and a burden to the family.²⁴ In our cohort, we show that GT placement for FC improved symptoms, without risking additional complications. Gastrointestinal quality of life scores improved, as did rates of concerning constipation symptoms and Bristol stool scores. GT placement was not first line of therapy; most of the patients in our cohort had failed previous attempts at conservative management with oral medications. As evidenced by only one verbal patient and overall low IQ and low ABS scores, our cohort was comprised of patients with extremely significant ASD, accompanied by disruptive behaviors. Despite this, there were no significant complications in our cohort, including no early dislodgement, and patients had improvement in their symptoms, suggesting GT for FC can be considered even in patients with significant ASD.

The approach to identifying patients with ASD and FC who are a candidate for GT placement is critical. At our institution, this is possible due to close collaboration between pediatric gastroenterology and pediatric colorectal surgery. Patients are identified as candidates for GT placement if they meet three criteria: (1) they have failed more conservative management including laxatives or enemas, (2) they have significant quality of life impairment, and (3) historical and radiographical evidence that FC is severe with the potential to cause loss of colonic function, as evidenced by presence of FC for multiple years, dilation of distal colon, and progressive fecal incontinence. If two or more of these criteria are met, GT placement is discussed with the family. As demonstrated here, the placement of a GT for constipation in a child with ASD is not only feasible, but successful and beneficial to the child with ASD, including those with significantly impaired adaptive functioning.

This is the first study to describe the use of GT in patients with FC and ASD, but it is vulnerable to several limitations. Because this technique follows more conservative management options, the number of patients in our sample is small, limiting true statistical analysis. However, given our encouraging results, we feel the technique deserved to be shared. Second, our institution is a quaternary referral center for patients with severe colorectal and gastrointestinal pathologies. It is likely that there is some self-selection in terms of more complicated ASD and FC. Finally, we followed patients for a minimum of 3 months, at which time all patients were continuing to use their tube. Further details on long-term outcomes, especially as they relate to toilet training, is unknown.

5 CONCLUSION

Placement of a GT for management of FC in children with ASD is associated with improvement in constipation symptoms, stool frequency, stool consistency, and quality of life. In our series of patients, there were no postoperative complications. Further prospective studies will help confirm our findings.

CONFLICT OF INTEREST STATEMENT

The authors declare no conflicts of interest.