DOI QR코드

DOI QR Code

Parent Perspectives of Diagnostic and Monitoring Tests Undertaken by Their Child with Inflammatory Bowel Disease

  • Received : 2020.06.01
  • Accepted : 2020.08.23
  • Published : 2021.01.15

Abstract

Purpose: To assess parent perspectives of the current and potential future tests for their child with inflammatory bowel disease (IBD). Methods: New Zealand parents of a child with IBD were invited to complete an anonymous online survey. Experiences relating to their child's blood or faecal tests, medical imaging (abdominal ultrasound [US], abdominal computerised tomography [CT] and magnetic resonance enterography) and colonoscopy were collected. Perceived attitudes to potential future testing of urine, saliva, and breath, were sought. Results: Twenty-eight parents, 93% female completed the survey, and 86% were aged between 35 and 54 years. Baseline information was provided by parents for 27 of 28 children, 70.3% had Crohn's disease with a mean disease duration of 2.67 years. Blood tests were the most requested and completed tests, while CT was the least ordered and most refused test. Colonoscopy was rated as the least comfortable and generated the most worry. Explanation of test significantly improved parent's levels of understanding when their child had blood, faecal, imaging (US) or colonoscopy tests. Providing an explanation, test invasiveness and the impact of the blood results may have on their child's treatment significantly improved parents' comfort levels. However, explanation of colonoscopy generated a significant parental concerns. Saliva, urine and blood tests were chosen as the most preferred disease monitoring tests. Conclusion: Parents preferred any tests less invasive than colonoscopy for monitoring their child's IBD. Although providing explanation of their child's tests enhanced parents' understanding, it can also affect parents' levels of concern and comfort.

Keywords

References

  1. Abraham C, Cho JH. Inflammatory bowel disease. N Engl J Med 2009;361:2066-78. https://doi.org/10.1056/NEJMra0804647
  2. Benchimol EI, Fortinsky KJ, Gozdyra P, Van den Heuvel M, Van Limbergen J, Griffiths AM. Epidemiology of pediatric inflammatory bowel disease: a systematic review of international trends. Inflamm Bowel Dis 2011;17:423-39. https://doi.org/10.1002/ibd.21349
  3. Lopez RN, Evans HM, Appleton L, Bishop J, Chin S, Mouat S, et al. Point prevalence of pediatric inflammatory bowel disease in New Zealand in 2015: initial results from the PINZ study. Inflamm Bowel Dis 2017;23:1418-24. https://doi.org/10.1097/MIB.0000000000001138
  4. Peyrin-Biroulet L, Sandborn W, Sands BE, Reinisch W, Bemelman W, Bryant RV, et al. Selecting Therapeutic Targets in Inflammatory Bowel Disease (STRIDE): determining therapeutic goals for treatto-target. Am J Gastroenterol 2015;110:1324-38. https://doi.org/10.1038/ajg.2015.233
  5. Pineton de Chambrun G, Peyrin-Biroulet L, Lemann M, Colombel JF. Clinical implications of mucosal healing for the management of IBD. Nat Rev Gastroenterol Hepatol 2010;7:15-29. https://doi.org/10.1038/nrgastro.2009.203
  6. Shah SC, Colombel JF, Sands BE, Narula N. Mucosal healing is associated with improved long-term outcomes of patients with ulcerative colitis: a systematic review and meta-analysis. Clin Gastroenterol Hepatol 2016;14:1245-55.e8. https://doi.org/10.1016/j.cgh.2016.01.015
  7. Shah SC, Colombel JF, Sands BE, Narula N. Systematic review with meta-analysis: mucosal healing is associated with improved long-term outcomes in Crohn's disease. Aliment Pharmacol Ther 2016;43:317-33. https://doi.org/10.1111/apt.13475
  8. Vejzovic V, Wennick A, Idvall E, Bramhagen AC. A private affair: children's experiences prior to colonoscopy. J Clin Nurs 2015;24:1038-47. https://doi.org/10.1111/jocn.12661
  9. Papay P, Ignjatovic A, Karmiris K, Amarante H, Milheller P, Feagan B, et al. Optimising monitoring in the management of Crohn's disease: a physician's perspective. J Crohns Colitis 2013;7:653-69. https://doi.org/10.1016/j.crohns.2013.02.005
  10. Kittanakom S, Shajib MS, Garvie K, Turner J, Brooks D, Odeh S, et al. Comparison of fecal calprotectin methods for predicting relapse of pediatric inflammatory bowel disease. Can J Gastroenterol Hepatol 2017;2017:1450970.
  11. Alonso A, Julia A, Vinaixa M, Domenech E, Fernández-Nebro A, Canete JD, et al. Urine metabolome profiling of immune-mediated inflammatory diseases. BMC Med 2016;14:133. https://doi.org/10.1186/s12916-016-0681-8
  12. Dawiskiba T, Deja S, Mulak A, Zabek A, Jawien E, Pawelka D, et al. Serum and urine metabolomic fingerprinting in diagnostics of inflammatory bowel diseases. World J Gastroenterol 2014;20:163-74. https://doi.org/10.3748/wjg.v20.i1.163
  13. Hicks LC, Huang J, Kumar S, Powles ST, Orchard TR, Hanna GB, et al. Analysis of exhaled breath volatile organic compounds in inflammatory bowel disease: a pilot study. J Crohns Colitis 2015;9:731-7. https://doi.org/10.1093/ecco-jcc/jjv102
  14. Kurada S, Alkhouri N, Fiocchi C, Dweik R, Rieder F. Review article: breath analysis in inflammatory bowel diseases. Aliment Pharmacol Ther 2015;41:329-41. https://doi.org/10.1111/apt.13050
  15. Majster M, Almer S, Bostrom EA. Salivary calprotectin is elevated in patients with active inflammatory bowel disease. Arch Oral Biol 2019;107:104528. https://doi.org/10.1016/j.archoralbio.2019.104528
  16. Levine A, Koletzko S, Turner D, Escher JC, Cucchiara S, de Ridder L, et al. ESPGHAN revised porto criteria for the diagnosis of inflammatory bowel disease in children and adolescents. J Pediatr Gastroenterol Nutr 2014;58:795-806. https://doi.org/10.1097/mpg.0000000000000239
  17. Baliyan V, Kordbacheh H, Serrao J, Gee MS, Yajnik V, Sahani DV, et al. Survey on practice patterns in imaging utilization in patients with Crohn's disease. Clin Imaging 2019;54:91-9. https://doi.org/10.1016/j.clinimag.2018.12.003
  18. Easterlin MC, Berdahl CT, Rabizadeh S, Spiegel B, Agoratus L, Hoover C, et al. Child and family perspectives on adjustment to and coping with pediatric inflammatory bowel disease. J Pediatr Gastroenterol Nutr 2020;71:e16-27.
  19. Jelenova D, Prasko J, Ociskova M, Latalova K, Karaskova E, Hruby R, et al. Quality of life and parental styles assessed by adolescents suffering from inflammatory bowel diseases and their parents. Neuropsychiatr Dis Treat 2016;12:665-72.
  20. Jelenova D, Prasko J, Ociskova M, Karaskova E, Hunkova M, Kolarova J, et al. Quality of life in adolescents with inflammatory bowel disease and their parents--comparison with healthy controls. Neuro Endocrinol Lett 2015;36:787-92.
  21. Gray WN, Boyle SL, Graef DM, Janicke DM, Jolley CD, Denson LA, et al. Health-related quality of life in youth with Crohn disease: role of disease activity and parenting stress. J Pediatr Gastroenterol Nutr 2015;60:749-53. https://doi.org/10.1097/MPG.0000000000000696
  22. Kluthe C, Isaac DM, Hiller K, Carroll M, Wine E, van Manen M, et al. Qualitative analysis of pediatric patient and caregiver perspectives after recent diagnosis with inflammatory bowel disease. J Pediatr Nurs 2018;38:106-13. https://doi.org/10.1016/j.pedn.2017.11.011
  23. Noiseux I, Veilleux S, Bitton A, Kohen R, Vachon L, White Guay B, et al. Inflammatory bowel disease patient perceptions of diagnostic and monitoring tests and procedures. BMC Gastroenterol 2019;19:30. https://doi.org/10.1186/s12876-019-0946-8
  24. Ho SSC, Keenan JI, Day AS. Adult perceptions of Inflammatory bowel disease diagnostic and monitoring tests. Paper presented at: New Zealand Society of Gastroenterology Annual Scientific Meeting; 2019 Nov 27-29; Wellington, New Zealand.
  25. Committee on Hospital Care and Institute for Patient- AND FAMILY-CENTERED CARE. Patient- and family-centered care and the pediatrician's role. Pediatrics 2012;129:394-404. https://doi.org/10.1542/peds.2011-3084
  26. Shay LA, Lafata JE. Where is the evidence? A systematic review of shared decision making and patient outcomes. Med Decis Making 2015;35:114-31. https://doi.org/10.1177/0272989X14551638
  27. Goodsall TM, Noy R, Nguyen TM, Costello SP, Jairath V, Bryant RV. Systematic review: patient perceptions of monitoring tools in inflammatory bowel disease. J Can Assoc Gastroenterol 2020 [doi: 10.1093/jcag/gwaa006.] [Epub ahead of print].
  28. Rajagopalan A, Sathananthan D, An YK, Van De Ven L, Martin S, Fon J, et al. Gastrointestinal ultrasound in inflammatory bowel disease care: patient perceptions and impact on disease-related knowledge. JGH Open 2019;4:267-72. https://doi.org/10.1002/jgh3.12268
  29. Heida A, Dijkstra A, Dantuma SK, van Rheenen PF. A cross-sectional study on the perceptions and practices of teenagers with inflammatory bowel disease about repeated stool sampling. J Adolesc Health 2016;59:479-81. https://doi.org/10.1016/j.jadohealth.2016.06.009
  30. Buisson A, Gonzalez F, Poullenot F, Nancey S, Sollellis E, Fumery M, et al. Comparative acceptability and perceived clinical utility of monitoring tools: a nationwide survey of patients with inflammatory bowel disease. Inflamm Bowel Dis 2017;23:1425-33. https://doi.org/10.1097/MIB.0000000000001140