Literature DB >> 32088880

Quality of life and comprehensive health supervision for children with Down syndrome in Thailand.

Kitiwan Rojnueangnit1, Penrawee Khaosamlee2,3, Issarapa Chunsuwan2, Nattariya Vorravanpreecha4, Tanayoot Lertboonnum4, Rungrote Rodjanadit4, Pak Sriplienchan4.   

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.

Entities:  

Keywords:  Children with Down syndrome; Comprehensive care; Health supervision; Quality of life

Year:  2020        PMID: 32088880      PMCID: PMC7295893          DOI: 10.1007/s12687-020-00458-4

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  15 in total

1.  Reliability and validity of the Thai version of the Pediatric Quality of Life Inventory 4.0.

Authors:  Paskorn Sritipsukho; Matoorada Wisai; Montarat Thavorncharoensap
Journal:  Qual Life Res       Date:  2012-05-03       Impact factor: 4.147

2.  American Academy of Pediatrics: Health supervision for children with Down syndrome.

Authors: 
Journal:  Pediatrics       Date:  2001-02       Impact factor: 7.124

3.  Understanding physicians' attitudes toward people with Down syndrome.

Authors:  Jill E Pace; Mikyong Shin; Sonja A Rasmussen
Journal:  Am J Med Genet A       Date:  2011-05-13       Impact factor: 2.802

Review 4.  A review of measures of quality of life for children with chronic illness.

Authors:  C Eiser; R Morse
Journal:  Arch Dis Child       Date:  2001-03       Impact factor: 3.791

5.  PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations.

Authors:  J W Varni; M Seid; P S Kurtin
Journal:  Med Care       Date:  2001-08       Impact factor: 2.983

6.  Adults with Down's syndrome: the prevalence of complications and health care in the community.

Authors:  Alex Henderson; Sally A Lynch; Steve Wilkinson; Morag Hunter
Journal:  Br J Gen Pract       Date:  2007-01       Impact factor: 5.386

7.  Quality of life of children with attention-deficit/hyper activity disorder.

Authors:  Kraison Pongwilairat; Orawan Louthrenoo; Chawanun Charnsil; Chatree Witoonchart
Journal:  J Med Assoc Thai       Date:  2005-08

8.  Associated congenital anomalies among cases with Down syndrome.

Authors:  Claude Stoll; Beatrice Dott; Yves Alembik; Marie-Paule Roth
Journal:  Eur J Med Genet       Date:  2015-11-11       Impact factor: 2.708

9.  Parent views on enhancing the quality of health care for their children with fragile X syndrome, autism or Down syndrome.

Authors:  P Minnes; K Steiner
Journal:  Child Care Health Dev       Date:  2009-03       Impact factor: 2.508

10.  Development, problem behavior, and quality of life in a population based sample of eight-year-old children with Down syndrome.

Authors:  Helma B M van Gameren-Oosterom; Minne Fekkes; Simone E Buitendijk; Ashna D Mohangoo; Jeanet Bruil; Jacobus P Van Wouwe
Journal:  PLoS One       Date:  2011-07-21       Impact factor: 3.240

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  2 in total

Review 1.  Family Variables and Quality of Life in Children with Down Syndrome: A Scoping Review.

Authors:  Anna Lee; Kathleen Knafl; Marcia Van Riper
Journal:  Int J Environ Res Public Health       Date:  2021-01-07       Impact factor: 3.390

2.  Parental perspectives on the quality of life of children with Down syndrome.

Authors:  Elisa Fucà; Paolo Galassi; Floriana Costanzo; Stefano Vicari
Journal:  Front Psychiatry       Date:  2022-08-12       Impact factor: 5.435

  2 in total

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