Transition Risk Assessment Score to Stratify Health Care Needs and Interventions in Adolescents with Anorectal Malformations: A Pilot Study

Introduction Anorectal malformations (ARMs) are a complex collection of congenital disorders of the anus, rectum, and genitourinary system with possible active morbidities beyond adolescence. Aims To create the first evidence-based inclusive transition risk assessment score (TRAS) to stratify health care needs and interventions in teenagers with ARM transitioning to adult health care. Method MEDLINE, EMBASE, and the Cochrane Library were searched electronically for original articles containing published scoring systems evaluating children with ARM from January 1, 1990 to December 31, 2013. Current published scoring systems identified were weighted to create a novel score (TRAS) to objectively assess the most common active problems present in teenagers with ARM: fecal, urinary, and sexual functions; quality of life; and psychosocial well-being. The TRAS was applied to patients visiting our tertiary anorectal clinic in the period from January 2014 to March 2016. Patients were rescored on each visit to the clinic. Results Total 21 separate scoring systems were identified in the literature, with 3 scoring systems incorporated into the TRAS. The score divided patients into low (0-4), medium (5-10), and high (11-35) risk categories. The TRAS was used to assess 14 adolescents with ARMs during the study period; 14 patients had a single TRAS, 7 had two TRAS, and 3 had three TRAS assessments. At first visit 14 patients with a median age of 13 were assessed with TRAS ranging from 2 to 13 (M=5, SD 3.33, 95% CI 3.08-7.68). At second visit seven patients with a median age of 15 were assessed with TRAS ranging from 2 to 12 (M=6.43, SD 3.51, 95% CI 3.19-9.67). At third visit three patients with a median age of 16 were assessed with TRAS ranging from 6 to 12 (M=8.33, SD 3.21, 95% CI 0.35-16.32). There was no significant difference (p > 0.05) between a patient's TRAS at different visits. Conclusion Preliminary data suggest that the TRAS is a holistic and effective clinical tool to help to objectively stratify ARM patients, identify active problems, and select those who may require intensive multidisciplinary input and interventions during the transition to adult health care services.