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Eur J Pediatr Surg 2017; 27(04): 361-367
DOI: 10.1055/s-0036-1593980
Original Article
Georg Thieme Verlag KG Stuttgart · New York

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

Martin J. Connor
1   Department of Pediatric and Neonatal Surgery, St. George's Healthcare NHS Trust and University of London, United Kingdom
,
Laurie Rigueros Springford
1   Department of Pediatric and Neonatal Surgery, St. George's Healthcare NHS Trust and University of London, United Kingdom
,
Stefano Giuliani
1   Department of Pediatric and Neonatal Surgery, St. George's Healthcare NHS Trust and University of London, United Kingdom
› Author Affiliations
Further Information

Publication History

24 April 2016

20 September 2016

Publication Date:
30 November 2016 (online)

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Abstract

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.

Keywords

transitional care - adolescent - long-term care - anus - imperforate - anorectal malformation

Note

Martin J. Connor and Laurie Rigueros Springford contributed equally to this work, and both should be considered the first author.


 

  • References

  • 1 Hassink EA, Rieu PN, Brugman AT, Festen C. Quality of life after operatively corrected high anorectal malformation: a long-term follow-up study of patients aged 18 years and older. J Pediatr Surg 1994; 29 (06) 773-776
    CrossrefPubMedGoogle Scholar
  • 2 Hassett S, Snell S, Hughes-Thomas A, Holmes K. 10-year outcome of children born with anorectal malformation, treated by posterior sagittal anorectoplasty, assessed according to the Krickenbeck classification. J Pediatr Surg 2009; 44 (02) 399-403
    CrossrefPubMedGoogle Scholar
  • 3 Falcone Jr RA, Levitt MA, Peña A, Bates M. Increased heritability of certain types of anorectal malformations. J Pediatr Surg 2007; 42 (01) 124-127 , discussion 127–128
    CrossrefPubMedGoogle Scholar
  • 4 Rigueros Springford L, Connor MJ, Jones K, Kapetanakis VV, Giuliani S. Prevalence of active long-term problems in patients with anorectal malformations: a systematic review. Dis Colon Rectum 2016; 59 (06) 570-580
    CrossrefPubMedGoogle Scholar
  • 5 Grano C, Aminoff D, Lucidi F, Violani C. Long-term disease-specific quality of life in children and adolescent patients with ARM. J Pediatr Surg 2012; 47 (07) 1317-1322
    CrossrefPubMedGoogle Scholar
  • 6 Senel E, Akbiyik F, Atayurt H, Tiryaki HT. Urological problems or fecal continence during long-term follow-up of patients with anorectal malformation. Pediatr Surg Int 2010; 26 (07) 683-689
    CrossrefPubMedGoogle Scholar
  • 7 Diseth TH, Emblem R. Somatic function, mental health, and psychosocial adjustment of adolescents with anorectal anomalies. J Pediatr Surg 1996; 31 (05) 638-643
    CrossrefPubMedGoogle Scholar
  • 8 Ludman L, Spitz L, Kiely EM. Social and emotional impact of faecal incontinence after surgery for anorectal abnormalities. Arch Dis Child 1994; 71 (03) 194-200
    CrossrefPubMedGoogle Scholar
  • 9 Giuliani S, Anselmo DM. Transitioning pediatric surgical patients to adult surgical care: a call to action. JAMA Surg 2014; 149 (06) 499-500
    CrossrefPubMedGoogle Scholar
  • 10 Ong N-T, Beasley SW. Comparison of clinical methods for the assessment of continence after repair of high anorectal anomalies. Pediatr Surg Int 1990; 5 (04) 233-237
    PubMedGoogle Scholar
  • 11 Holschneider A, Hutson J, Peña A. , et al. Preliminary report on the international conference for the development of standards for the treatment of anorectal malformations. J Pediatr Surg 2005; 40 (10) 1521-1526
    CrossrefPubMedGoogle Scholar
  • 12 Lombardi L, Bruder E, Caravaggi F, Del Rossi C, Martucciello G. Abnormalities in “low” anorectal malformations (ARMs) and functional results resecting the distal 3 cm. J Pediatr Surg 2013; 48 (06) 1294-1300
    CrossrefPubMedGoogle Scholar
  • 13 De Vos C, Arnold M, Sidler D, Moore SW. A comparison of laparoscopic-assisted (LAARP) and posterior sagittal (PSARP) anorectoplasty in the outcome of intermediate and high anorectal malformations. S Afr J Surg 2011; 49 (01) 39-43
    Google Scholar
  • 14 Borg HC, Holmdahl G, Gustavsson K, Doroszkiewicz M, Sillén U. Longitudinal study of bowel function in children with anorectal malformations. J Pediatr Surg 2013; 48 (03) 597-606
    CrossrefPubMedGoogle Scholar
  • 15 Schmiedeke E, Zwink N, Schwarzer N. , et al. Unexpected results of a nationwide, treatment-independent assessment of fecal incontinence in patients with anorectal anomalies. Pediatr Surg Int 2012; 28 (08) 825-830
    CrossrefPubMedGoogle Scholar
  • 16 Wong KKY, Wu X, Chan IHY, Tam PKH. Evaluation of defecative function 5 years or longer after laparoscopic-assisted pull-through for imperforate anus. J Pediatr Surg 2011; 46 (12) 2313-2315
    CrossrefPubMedGoogle Scholar
  • 17 John V, Chacko J, Mathai J, Karl S, Sen S. Psychosocial aspects of follow-up of children operated for intermediate anorectal malformations. Pediatr Surg Int 2010; 26 (10) 989-994
    CrossrefPubMedGoogle Scholar
  • 18 Daher P, Daher R, Riachy E, Zeidan S. Do low-type anorectal malformations have a better prognosis than the intermediate and high types? A preliminary report using the Krickenbeck score. Eur J Pediatr Surg 2007; 17 (05) 340-343
    Article in Thieme ConnectPubMedGoogle Scholar
  • 19 Holschneider AM, Jesch NK, Stragholz E, Pfrommer W. Surgical methods for anorectal malformations from Rehbein to Peña—critical assessment of score systems and proposal for a new classification. Eur J Pediatr Surg 2002; 12 (02) 73-82
    Article in Thieme ConnectPubMedGoogle Scholar
  • 20 Ergun O, Tatlisu R, Pehlivan M, Celik A. The efficacy of external neuromyogenic stimulation on neuromuscular anorectal incontinence. Eur J Pediatr Surg 2010; 20 (04) 230-233
    Article in Thieme ConnectPubMedGoogle Scholar
  • 21 Holschneider AM, Koebke J, Meier-Ruge W, Land N, Jesch NK, Pfrommer W. Pathophysiology of chronic constipation in anorectal malformations. Long-term results and preliminary anatomical investigations. Eur J Pediatr Surg 2001; 11 (05) 305-310
    Article in Thieme ConnectPubMedGoogle Scholar
  • 22 Rintala R, Mildh L, Lindahl H. Fecal continence and quality of life for adult patients with an operated high or intermediate anorectal malformation. J Pediatr Surg 1994; 29 (06) 777-780
    CrossrefPubMedGoogle Scholar
  • 23 Rintala R, Mildh L, Lindahl H. Fecal continence and quality of life in adult patients with an operated low anorectal malformation. J Pediatr Surg 1992; 27 (07) 902-905
    CrossrefPubMedGoogle Scholar
  • 24 El-Debeiky MS, Safan HA, Shafei IA, Kader HA, Hay SA. Long-term functional evaluation of fecal continence after laparoscopic-assisted pull-through for high anorectal malformations. J Laparoendosc Adv Surg Tech A 2009; 19 (01) (Suppl. 01) S51-S54
    CrossrefPubMedGoogle Scholar
  • 25 Wakhlu A, Wakhlu AK. Technique and long-term results of coloplasty for congenital short colon. Pediatr Surg Int 2009; 25 (01) 47-52
    CrossrefPubMedGoogle Scholar
  • 26 Grano C, Aminoff D, Lucidi F, Violani C. Disease-specific quality of life in children and adults with anorectal malformations. Pediatr Surg Int 2010; 26 (02) 151-155
    CrossrefPubMedGoogle Scholar
  • 27 van Kuyk EM, Wissink-Essink M, Brugman-Boezeman AT. , et al. Multidisciplinary behavioral treatment of defecation problems: a controlled study in children with anorectal malformations. J Pediatr Surg 2001; 36 (09) 1350-1356
    CrossrefPubMedGoogle Scholar
  • 28 Tsugawa C, Hisano K, Nishijima E, Muraji T, Satoh S. Posterior sagittal anorectoplasty for failed imperforate anus surgery: lessons learned from secondary repairs. J Pediatr Surg 2000; 35 (11) 1626-1629
    CrossrefPubMedGoogle Scholar
  • 29 Grano C, Aminoff D, Lucidi F, Violani C. Long-term disease-specific quality of life in adult anorectal malformation patients. J Pediatr Surg 2011; 46 (04) 691-698
    CrossrefPubMedGoogle Scholar
  • 30 Clermidi P, Podevin G, Crétolle C, Sarnacki S, Hardouin JB. The challenge of measuring quality of life in children with Hirschsprung's disease or anorectal malformation. J Pediatr Surg 2013; 48 (10) 2118-2127
    CrossrefPubMedGoogle Scholar
  • 31 Bai Y, Yuan Z, Wang W, Zhao Y, Wang H, Wang W. Quality of life for children with fecal incontinence after surgically corrected anorectal malformation. J Pediatr Surg 2000; 35 (03) 462-464
    CrossrefPubMedGoogle Scholar
  • 32 Goyal A, Williams JM, Kenny SE. , et al. Functional outcome and quality of life in anorectal malformations. J Pediatr Surg 2006; 41 (02) 318-322
    CrossrefPubMedGoogle Scholar
  • 33 Peña A. Anorectal malformations. Semin Pediatr Surg 1995; 4 (01) 35-47
    PubMedGoogle Scholar
  • 34 Demirogullari B, Sonmez K, Turkyilmaz Z. , et al. Intermittent assessment of patients with repaired anorectal malformations: recovery of bowel and anorectal functions with patient age. Gazi Med J 2003; 14 (04) 159-166
    PubMedGoogle Scholar
  • 35 Huang CF, Lee HC, Yeung CY. , et al. Constipation is a major complication after posterior sagittal anorectoplasty for anorectal malformations in children. Pediatr Neonatol 2012; 53 (04) 252-256
    CrossrefPubMedGoogle Scholar
  • 36 Peeraully MR, Lopes J, Wright A. , et al. Experience of the MACE procedure at a regional pediatric surgical unit: a 15-year retrospective review. Eur J Pediatr Surg 2014; 24 (01) 113-116
    Article in Thieme ConnectPubMedGoogle Scholar
  • 37 Poley MJ, Stolk EA, Tibboel D, Molenaar JC, Busschbach JJ. Short term and long term health related quality of life after congenital anorectal malformations and congenital diaphragmatic hernia. Arch Dis Child 2004; 89 (09) 836-841
    CrossrefPubMedGoogle Scholar
  • 38 Kubota A, Nose K, Yamamoto E. , et al. Psychosocial and cognitive consequences of major neonatal surgery. J Pediatr Surg 2011; 46 (12) 2250-2253
    CrossrefPubMedGoogle Scholar
  • 39 Liu G, Yuan J, Geng J, Wang C, Li T. The treatment of high and intermediate anorectal malformations: one stage or three procedures?. J Pediatr Surg 2004; 39 (10) 1466-1471
    CrossrefPubMedGoogle Scholar
  • 40 Schmidt D, Jenetzky E, Zwink N, Schmiedeke E, Maerzheuser S. ; German Network for Congenital Uro-REctal Malformations (CURE-Net). Postoperative complications in adults with anorectal malformation: a need for transition. Pediatr Surg Int 2012; 28 (08) 793-795
    CrossrefPubMedGoogle Scholar
  • 41 Hashish MS, Dawoud HH, Hirschl RB. , et al. Long-term functional outcome and quality of life in patients with high imperforate anus. J Pediatr Surg 2010; 45 (01) 224-230
    CrossrefPubMedGoogle Scholar
  • 42 Kayaba H, Hebiguchi T, Yoshino H. , et al. Evaluation of anorectal functions of children with anorectal malformations using fecoflowmetry. J Pediatr Surg 2002; 37 (04) 623-628
    CrossrefPubMedGoogle Scholar
  • 43 Rintala RJ, Lindahl HG. Fecal continence in patients having undergone posterior sagittal anorectoplasty procedure for a high anorectal malformation improves at adolescence, as constipation disappears. J Pediatr Surg 2001; 36 (08) 1218-1221
    CrossrefPubMedGoogle Scholar
  • 44 Rintala RJ, Lindahl HG, Rasanen M. Do children with repaired low anorectal malformations have normal bowel function?. J Pediatr Surg 1997; 32 (06) 823-826
    CrossrefPubMedGoogle Scholar
  • 45 Achenbach TM, Edelbrock C. Manual for the Child Behavior Checklist and Revised Child Behavior Profile. Burlington: University of Vermont, Department of Psychiatry; 1983: 393-405
    Google Scholar
  • 46 Cadario F, Prodam F, Bellone S. , et al. Transition process of patients with type 1 diabetes (T1DM) from paediatric to the adult health care service: a hospital-based approach. Clin Endocrinol (Oxf) 2009; 71 (03) 346-350
    CrossrefPubMedGoogle Scholar
  • 47 Holmes-Walker DJ, Llewellyn AC, Farrell K. A transition care programme which improves diabetes control and reduces hospital admission rates in young adults with type 1 diabetes aged 15–25 years. Diabet Med 2007; 24 (07) 764-769
    CrossrefPubMedGoogle Scholar
  • 48 Lane JT, Ferguson A, Hall J. , et al. Glycemic control over 3 years in a young adult clinic for patients with type 1 diabetes. Diabetes Res Clin Pract 2007; 78 (03) 385-391
    CrossrefPubMedGoogle Scholar
  • 49 Nakhla M, Daneman D, To T, Paradis G, Guttmann A. Transition to adult care for youths with diabetes mellitus: findings from a Universal Health Care System. Pediatrics 2009; 124 (06) e1134-e1141
    CrossrefPubMedGoogle Scholar
  • 50 Watson AR. Non-compliance and transfer from paediatric to adult transplant unit. Pediatr Nephrol 2000; 14 (06) 469-472
    CrossrefPubMedGoogle Scholar
  • 51 American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians-American Society of Internal Medicine A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002; 110 (6 Pt 2): 1304-1306
    Google Scholar
  • 52 Viner R. Transition from paediatric to adult care. Bridging the gaps or passing the buck?. Arch Dis Child 1999; 81 (03) 271-275
    CrossrefPubMedGoogle Scholar
  • 53 Shalaby MS, Gibson A, Granitsiotis P, Conn G, Cascio S. Assessment of the introduction of an adolescent transition urology clinic using a validated questionnaire. J Pediatr Urol 2015; 11 (02) 89.e1-89.e5
    CrossrefPubMedGoogle Scholar