Abstract
Children with Down syndrome often require several specialty doctors and multidisciplinary teams for their associated anomalies. This may impact their quality of life and creates gaps in treatment monitoring. No studies have yet been conducted in Thailand to measure their quality of life and level of comprehensive health supervision. Therefore, we aimed to study the quality of life among children with Down syndrome and determine if they receive comprehensive health supervision for their condition. In this descriptive research, data were collected from a medical record review of children with Down syndrome during a 1-year period in our Pediatric Outpatient Clinic; 50 children and 39 caregivers participated. Mean total quality of life score of the children was 67.9/100 points. The children had the highest scores (73.6 ± 12.8) in emotional functioning and the lowest (57.2 ± 25.6) in cognitive functioning. It appears that the quality of life may be lower in Down syndrome patients than in Thai children without it. Regarding health supervision, all 50 were screened for thyroid function, and 48 received cardiac evaluations. However, only 17 (34%) received “complete basic assessment” of 5 screening combinations with developmental evaluations and growth monitoring. Furthermore, none received “comprehensive” evaluations for all recommended conditions. While these findings show a need for health supervision improvement for children with Down syndrome within our hospital, they may also be indicative for most care facilities throughout Thailand.
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References
American Academy of Pediatrics. Committee on Genetics (2001) American Academy of Pediatrics: health supervision for children with Down syndrome. Pediatrics 107:442–449. https://doi.org/10.1542/peds.107.2.442
Bull MJ, Committee on G (2011) Health supervision for children with Down syndrome. Pediatrics 128:393–406. https://doi.org/10.1542/peds.2011-1605
Cuskelly M, Hauser-Cram P, Van Riper AM (2008) Families of children with Down syndrome:what we know and what we need to know. Down Syndr Res Pract:105–113. https://doi.org/10.3104/reviews.2079
Duangchu S, Wongchanchailert M, Khotchawan S (2014) Quality of Life in Children with Transfusion-Dependent Thalassemia at Songklanagarind Hospital. Songkla Med J 32:353–363
Eiser C, Morse R (2001) A review of measures of quality of life for children with chronic illness. Arch Dis Child 84:205–211. https://doi.org/10.1136/adc.84.3.205
van Gameren-Oosterom HB, Fekkes M, Buitendijk SE, Mohangoo AD, Bruil J, Van Wouwe JP (2011) Development, problem behavior, and quality of life in a population based sample of eight-year-old children with Down syndrome. PLoS One 6:e21879. https://doi.org/10.1371/journal.pone.0021879
Henderson A, Lynch SA, Wilkinson S, Hunter M (2007) Adults with Down’s syndrome: the prevalence of complications and health care in the community. Br J Gen Pract 57:50–55
Jonsson U, Alaie I, Lofgren Wilteus A, Zander E, Marschik PB, Coghill D, Bolte S (2017) Annual research review: quality of life and childhood mental and behavioural disorders - a critical review of the research. J Child Psychol Psychiatry 58:439–469. https://doi.org/10.1111/jcpp.12645
Minnes P, Steiner K (2009) Parent views on enhancing the quality of health care for their children with fragile X syndrome, autism or Down syndrome. Child Care Health Dev 35:250–256. https://doi.org/10.1111/j.1365-2214.2008.00931.x
Pace JE, Shin M, Rasmussen SA (2011) Understanding physicians’ attitudes toward people with Down syndrome. Am J Med Genet A 155A:1258–1263. https://doi.org/10.1002/ajmg.a.34039
Pangkanon S, Sawasdivorn S, Kuptanon C, Kabchan P (2014) The prevalence of congenital anomalies in Thailand. Thai J Pediatr 55:85–92
Pongwilairat K, Louthrenoo O, Charnsil C, Witoonchart C (2005) Quality of life of children with attention-deficit/hyper activity disorder. J Med Assoc Thai 88:1062–1066
Sherman SL, Allen EG, Bean LH, Freeman SB (2007) Epidemiology of Down syndrome. Ment Retard Dev Disabil Res Rev 13:221–227. https://doi.org/10.1002/mrdd.20157
Sritipsukho P, Wisai M, Thavorncharoensap M (2013) Reliability and validity of the Thai version of the Pediatric Quality of Life Inventory 4.0. Qual Life Res 22:551–557. https://doi.org/10.1007/s11136-012-0190-y
Stoll C, Dott B, Alembik Y, Roth MP (2015) Associated congenital anomalies among cases with Down syndrome. Eur J Med Genet 58:674–680. https://doi.org/10.1016/j.ejmg.2015.11.003
Varni JW, Seid M, Kurtin PS (2001) PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care 39:800–812
Visintainer PF, Leppert M, Bennett A, Accardo PJ (2004) Standardization of the Capute Scales: methods and results. J Child Neurol 19:967–972. https://doi.org/10.1177/08830738040190121101
World Health Organization (2018) Genes and chromosomal diseases. http://www.who.int/genomics/public/geneticdiseases/en/index1.html. Accessed 20 Oct 2018
Wunsayukha R (2010) Quality of life of parents with Down syndrome children. King Chulalongkorn http://www.thaipediatrics.org/thesis/pdf/ChulalongkornHospital/id8.pdf. Accessed 20 Oct 2018
Xanthopoulos MS et al (2017) Caregiver-reported quality of life in youth with down syndrome. J Pediatr 189:98–104.e101. https://doi.org/10.1016/j.jpeds.2017.06.073
Acknowledgments
We would like to thank patients and families who were part of this study, and the Faculty of Medicine, Thammasat University for providing funding (Grant 12/2559). We also thank Ms. Debra Kim Liwiski, writer/international instructor, Clinical Research Center, Faculty of Medicine, Thammasat University for language editing.
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This study was funded by the Faculty of Medicine, Thammasat University (Grant 12/2559).
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All authors contributed to this work. KR created the project, performed data analyses, and wrote the manuscript. PK collected data and assisted with data analysis. IC revised the manuscript. NV, TL, RR, and PS collected data. All authors discussed the results and reviewed the final manuscript.
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This study was ethically approved by the Institutional Review Board 1, Thammasat University (Faculty of Medicine), Project Code: MTU-EC-PE-1-040/59. All procedures performed in studies involving human participants are in accordance with the ethical standards of the institutional and/or national research committee and within the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
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Informed consent was obtained from all parental participants included in the study before participation in questionnaires and interviews. Informed assent was obtained from individual children older than 7 years who were able to understand the questionnaires.
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Rojnueangnit, K., Khaosamlee, P., Chunsuwan, I. et al. Quality of life and comprehensive health supervision for children with Down syndrome in Thailand. J Community Genet 11, 351–358 (2020). https://doi.org/10.1007/s12687-020-00458-4
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DOI: https://doi.org/10.1007/s12687-020-00458-4