Audit on awake anorectal manometry: tolerability in children

Chronic constipation (CC) and faecal incontinence (FI) in children is a considerable (0.5%–30% UK and internationally) and underappreciated healthcare problem that results in pain, fear of defaecation, embarrassment, poor quality of life (patient and family), bullying, school absence and refusal, suicidal ideation and, at worst, suicide attempts. There is a significant discrepancy regarding the service, particularly investigations, that are offered to children compared with adults. Awake anorectal manometry (ARM) is the goldstandard investigation in adult practice, and its use has evolved over the last 25 years. Reasons for this discrepancy are numerous: failure to appreciate the impact, stigma and silent suffering of children, assumptions made by healthcare professionals, limited knowledge of pathophysiology, natural history and prognosis of the condition, as well as economic burden, ethical concerns and motivation. It is our experience that children tolerate ARM well. Since 2016, 195 children have completed awake ARM (98% success rate) in our service. We sought to reassure ourselves, our patients, parents and referring clinicians that awake ARM is well tolerated in children, contrary to healthcare professionals’ perceptions. We undertook a service evaluation audit (RLH-11607) to assess patient perception of discomfort/pain threshold of awake ARM, by comparing this with a historical venepuncture (VP). Comparison with historical VP has several benefits: simplicity, most children had experience of VP, avoiding further discomfort, cost and ethical considerations. Children undergoing awake ARM were asked to compare the discomfort of awake ARM (using the 0–10 validated WongBaker scale: 0, no discomfort; 10, worst discomfort/pain) with historical VP. In total, 163 children (84%) (age 3–18 years) were able to recall both VP and awake ARM. Historical VP scored median 7 (range 0–10) compared with awake ARM 3 (range 0–10) (p<0.01, Pearson’s correlation) (figures 1 and 2). This result goes some way to reassuring those involved that children perceive awake ARM to be tolerable when compared with historical VP. We hope to dispel assumptions regarding investigation of children with disabling CC and FI. Although arguably not scientifically rigorous, we believe the information in this pragmatic evaluation of a novel service powerfully demonstrates that awake ARM is well tolerated in children. We anticipate that awake ARM will become the gold standard in children and begin to catch up with the service that is offered to adult patients. British Society of Paediatric Gastroenterology, Hepatology and Nutrition Consensus on standardisation of ARM in children has recently been reached. We hope the consensus and this novel evaluation will encourage clinicians to refer children, with this debilitating condition, for early specialist investigation and management. Ultimately, we hope that more centres will undertake awake ARM in children, which will allow scientific assessment, improved management, development of distinct phenotypes and better patient outcomes.