Quality of life of down syndrome children with gastrointestinal disorders using pediatric quality of life inventoryTM (PedsqlTM) assessment

https://doi.org/10.53730/ijhs.v6nS6.12649

Authors

  • Yunita Puspitasari Department of Pediatrics, Faculty of Medicine, Universitas Airlangga University | Dr. Soetomo General Hospital, Surabaya, Indonesia
  • Andy Darma Department of Pediatrics, Faculty of Medicine, Universitas Airlangga University, Surabaya, Indonesia | Dr. Soetomo General Hospital, Surabaya, Indonesia
  • Mira Irmawati Department of Pediatrics, Faculty of Medicine, Universitas Airlangga University, Dr. Soetomo General Hospital, Surabaya, Indonesia

Keywords:

down syndrome, gastrointestinal, PedsQL, quality of life

Abstract

GI disorders affect the quality of children. Children with Down syndrome have a high prevalence of GI disorders. This study aims to determine the life quality of Down syndrome children with GI disorders. This is a cross-sectional study using the PedsQL GI Symptoms Scale questionnaire & the ROME IV Diagnostic Questionnaire for Pediatric Functional Gastrointestinal Disorder for Children & Adolescents. Samples of Down syndrome children were collected in January-May 2022. The analysis was performed using IBM SPSS Statistics 25. The study samples include 101 Down syndrome children aged 2-18 years. Nonstructural GI disorders consist of those with GERD (8.9%), those with GERD & diarrhea (1%), those with GERD & constipation (1%), those with diarrhea 3%, and those with constipation 18.8%. Structural GI disorders consist of those with duodenal atresia, Hirschsprung's disease, duodenal stenosis with annular pancreas, and anal atresia (1%, 3%,1%, and 4%, respectively). Down syndrome children without GI disorders had a good quality of life, while 51.5% of Down syndrome children with nonstructural GI disorders have a poor quality of life. The quality of life is impaired on the sub-symptom scale of food and drink limits, swallowing trouble, heartburn and reflux, gas and bloating, constipation, blood in bowel movements.

Downloads

Download data is not yet available.

References

Abd El-Hady, S. S., Abd El-Azim, F. H. and El-Talawy, H. A. E. A. M. (2018). Correlation between cognitive function, gross motor skills and health – Related quality of life in children with Down syndrome. Egyptian Journal of Medical Human Genetics, 19(2), 97–101. doi:10.1016/j.ejmhg.2017.07.006.

Antonarakis, S. E., Lyle, R., Dermitzakis, E. T., Reymond, A., & Deutsch, S. (2004). Chromosome 21 and down syndrome: from genomics to pathophysiology. Nature reviews. Genetics, 5(10), 725–738. https://doi.org/10.1038/nrg1448.

Bermudez, B., de Oliveira, C. M., de Lima Cat, M. N., Magdalena, N., & Celli, A. (2019). Gastrointestinal disorders in Down syndrome. American journal of medical genetics. Part A, 179(8), 1426–1431. https://doi.org/10.1002/ajmg.a.61258.

Brown L. (2004). The healthy families program health status assesment (PedsQL) final report. http://www.mrmib.ca.gov/mrmib/HFP/PedsQL3.pdf

Choi, M. G., & Jung, H. K. (2011). Health related quality of life in functional gastrointestinal disorders in Asia. Journal of neurogastroenterology and motility, 17(3), 245–251. https://doi.org/10.5056/jnm.2011.17.3.245.

Das, R., Sarker, A., Saha, H., Bin Shahid, A. S., Shahunja, K. M., & Chisti, M. J. (2015). Experience with Clinically Diagnosed Down Syndrome Children Admitted with Diarrhea in an Urban Hospital in Bangladesh. International scholarly research notices, 2015, 979404.

Dash, I., Sampson, U. ., Sahu, P. K., Kumar, S., & Dash, O. P. (2022). Association of NTproBNP in metabolic syndrome. International Journal of Health Sciences, 6(S5), 2373–2382. https://doi.org/10.53730/ijhs.v6nS5.9149

Devanarayana, N. M., Rajindrajith, S., & Benninga, M. A. (2014). Quality of life and health care consultation in 13 to 18 year olds with abdominal pain predominant functional gastrointestinal diseases. BMC gastroenterology, 14, 150. https://doi.org/10.1186/1471-230X-14-150.

Faulks, D., Collado, V., Mazille, M. N., Veyrune, J. L., & Hennequin, M. (2008). Masticatory dysfunction in persons with Down's syndrome. Part 1: aetiology and incidence. Journal of oral rehabilitation, 35(11), 854–862. https://doi.org/10.1111/j.1365-2842.2008.01877.x.

Frykman, P. K., Cheng, Z., Wang, X., & Dhall, D. (2015). Enterocolitis causes profound lymphoid depletion in endothelin receptor B- and endothelin 3-null mouse models of Hirschsprung-associated enterocolitis. European journal of immunology, 45(3), 807–817. https://doi.org/10.1002/eji.201444737.

Haddad, F., Bourke, J., Wong, K., & Leonard, H. (2018). An investigation of the determinants of quality of life in adolescents and young adults with Down syndrome. PloS one, 13(6), e0197394. https://doi.org/10.1371/journal.pone.0197394.

Levitt, M. A., & Peña, A. (2007). Anorectal malformations. Orphanet journal of rare diseases, 2, 33. https://doi.org/10.1186/1750-1172-2-33.

Malt, E. A., Dahl, R. C., Haugsand, T. M., Ulvestad, I. H., Emilsen, N. M., Hansen, B., Cardenas, Y. E., Skøld, R. O., Thorsen, A. T., & Davidsen, E. M. (2013). Health and disease in adults with Down syndrome. Tidsskrift for den Norske laegeforening : tidsskrift for praktisk medicin, ny raekke, 133(3), 290–294. https://doi.org/10.4045/tidsskr.12.0390.

Maris, E., Van Winckel, M., Van De Vijver, E., Hauser, B., Callewaert, B., Hoffman, I., & Delle Chiaie, B. (2012). Gastrointestinal problems in children with Down syndrome. Journal du Pédiatre Belge, 14, 36–39.

Martin, G. E., Klusek, J., Estigarribia, B., & Roberts, J. E. (2009). Language Characteristics of Individuals with Down Syndrome. Topics in language disorders, 29(2), 112–132. https://doi.org/10.1097/tld.0b013e3181a71fe1.

Martucciello G. (2008). Hirschsprung's disease, one of the most difficult diagnoses in pediatric surgery: a review of the problems from clinical practice to the bench. European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie, 18(3), 140–149. https://doi.org/10.1055/s-2008-1038625.

Ranasinghe, Nishadi & Devanarayana, Niranga & Rajindrajith, Shaman & Perera, Madusanka & Nishanthinie, Samudu & Warnakulasuriya, Tania & De Zoysa, Piyanjali. (2018). Functional gastrointestinal diseases and psychological maladjustment, personality traits and quality of life. BMC Gastroenterology. 18. 10.1186/s12876-018-0760-8.

Ravel, A., Mircher, C., Rebillat, A. S., Cieuta-Walti, C., & Megarbane, A. (2020). Feeding problems and gastrointestinal diseases in Down syndrome. Archives de pediatrie : organe officiel de la Societe francaise de pediatrie, 27(1), 53–60. https://doi.org/10.1016/j.arcped.2019.11.008.

Roper, R. J., & Reeves, R. H. (2006). Understanding the basis for Down syndrome phenotypes. PLoS genetics, 2(3), e50. https://doi.org/10.1371/journal.pgen.0020050.

Smith, C. H., Teo, Y., & Simpson, S. (2014). An observational study of adults with Down syndrome eating independently. Dysphagia, 29(1), 52–60. https://doi.org/10.1007/s00455-013-9479-4.

Suryasa, I. W., Rodríguez-Gámez, M., & Koldoris, T. (2022). Post-pandemic health and its sustainability: Educational situation. International Journal of Health Sciences, 6(1), i-v. https://doi.org/10.53730/ijhs.v6n1.5949

Valenzuela, N. J. M., Passarelli, M. L. B., Coates, M. V., and Nascimento, L. F. C. (2011). Weight and height recovery in children with down syndrome and congenital heart disease. Revista Brasileira de Cirurgia Cardiovascular, 26(1), 61–68.

Varni, J. W., Bendo, C. B., Denham, J., Shulman, R. J., Self, M. M., Neigut, D. A., Nurko, S., Patel, A. S., Franciosi, J. P., Saps, M., Yeckes, A., Langseder, A., Saeed, S., & Pohl, J. F. (2015). PedsQL™ Gastrointestinal Symptoms Scales and Gastrointestinal Worry Scales in pediatric patients with functional and organic gastrointestinal diseases in comparison to healthy controls. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 24(2), 363–378. https://doi.org/10.1007/s11136-014-0781-x.

Wallace R. A. (2007). Clinical audit of gastrointestinal conditions occurring among adults with Down syndrome attending a specialist clinic. Journal of intellectual & developmental disability, 32(1), 45–50. https://doi.org/10.1080/13668250601146761.

Wardah, Sri Poedji, H. D., Panggih, D. K. (2019). INFODATIN: Sindrom Down, Ministry of Health Republik Indonesia. Jakarta.

Widana, I. K., Sumetri, N. W., & Sutapa, I. K. (2018). Effect of improvement on work attitudes and work environment on decreasing occupational pain. International Journal of Life Sciences, 2(3), 86–97. https://doi.org/10.29332/ijls.v2n3.209

Zárate, N., Mearin, F., Hidalgo, A., & Malagelada, J. R. (2001). Prospective evaluation of esophageal motor dysfunction in Down's syndrome. The American journal of gastroenterology, 96(6), 1718–1724. https://doi.org/10.1111/j.1572-0241.2001.03864.x.

Published

12-09-2022

How to Cite

Puspitasari, Y., Darma, A., & Irmawati, M. (2022). Quality of life of down syndrome children with gastrointestinal disorders using pediatric quality of life inventoryTM (PedsqlTM) assessment. International Journal of Health Sciences, 6(S6), 9835–9846. https://doi.org/10.53730/ijhs.v6nS6.12649

Issue

Section

Peer Review Articles

Most read articles by the same author(s)