Increasing the Health-Related Quality of Life in Children with Congenital Rubella Syndrome: A Mixed-methods Study

https://doi.org/10.22146/jcoemph.80029

Elisabeth Siti Herini(1), Agung Triono(2*), Kristy Iskandar(3), Ashadi Prasetyo(4), Albaaza Nuady(5), Marissa Leviani Hadiyanto(6), Kania Diantika(7), Veronica Wulan Wijayanti(8), Avianti Pramastuti(9)

(1) Department of Child Health, Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada, Dr. Sardjito Hospital
(2) Department of Child Health, Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada, Dr. Sardjito Hospital
(3) Department of Child Health, Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada, Dr. Sardjito Hospital
(4) Department of Ear, Nose, and Throat (ENT) Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada, Dr. Sardjito Hospital
(5) Department of Ophthalmology Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada, Dr. Sardjito Hospital
(6) Genetics Working Group, Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada, Dr. Sardjito Hospital
(7) Genetics Working Group, Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada, Dr. Sardjito Hospital
(8) Genetics Working Group, Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada, Dr. Sardjito Hospital
(9) Department of Child Health, Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada, Dr. Sardjito Hospital
(*) Corresponding Author

Abstract


Introduction: Rubella infection during the first trimester of pregnancy is a significant cause of fetal malformation syndrome, or Congenital Rubella Syndrome (CRS), which affects the children’s quality of life (QoL). A Community Engagement Program was arranged collaboratively to increase the QoL of children with CRS and enhance parents’ skills and knowledge to better care for their children with CRS. Methods: A mixed-method descriptive study was conducted from April to October 2022 at Dr. Sardjito General Hospital. Sample recruitment used the purposive sampling method, which had been clinically and serologically diagnosed with CRS. Children’s QoL data were analyzed with a cross-sectional study design. The tools used were the Pediatric Quality of Life Inventory (PedsQL)TM 4.0 Generic Core Scales and SPSS version 26 to analyze paired T-tests. A focus group discussion (FGD) was used for qualitative thematic analysis. Results: We involved ten members willing to participate voluntarily in the PedsQL assessment and FGD. The result was an increase in patients’ QoL in the Physical Function domain that was statistically significant: pre-test and post-test physical health summary [490 (±261) vs. 510 (±251); p=0.022]. While social, emotional, and school functions increased were not statistically significant. From the FGD, the parents had diverse experiences and understanding of CRS-supporting examinations and treatments needed. Parents felt the children’s growth and development, as social and school functions were the common burdens. In order to help CRS prevention, the parents suggested a more comprehensive premarital program and antenatal care. Conclusions: The Community Engagement Program helps to increase the patient’s QoL in the Physical Function domain. Comprehensive multidiscipline management is needed to support children’s growth, social and educational functions. Periodic evaluations are required to monitor the QoL of children with CRS.


Keywords


congenital rubella syndrome; PedsQL; quality of life; Indonesia

Full Text:

PDF


References

1. Roberts I. Nelson’s textbook of pediatrics (20th edn.), by R. Kliegman, B. Stanton, J. St. Geme, N. Schor (eds). Pediatr Radiol. 2017 Sep 1;47(10):1364–5. doi: https://doi.org/10.1007/ s00247-017-3907-9

2. Paller A, Mancini AJ, Hurwitz S. Hurwitz clinical pediatric dermatology: a textbook of skin disorders of childhood and adolescence [Internet]. 4th ed. New York: Elsevier/Saunders; 2011 [cited 2022 Nov 21]. 624 p. Available from: http://www.clinicalkey.com/dura/browse/ bookChapter/3-s2.0-C20090462809

3. Rosalina E, Purnami N. Congenital Rubella Syndrome profile of audiology outpatient clinic in Surabaya, Indonesia. Infect Dis Rep. 2020 Jul 6;12(Suppl 1):8762. doi: 10.4081/idr.2020.8762

4. Shukla S, Maraqa NF. Congenital Rubella. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2022 [cited 2022 Oct 5]. Available from: http://www.ncbi.nlm.nih.gov/ books/NBK507879/

5. Herini ES, Gunadi null, Triono A, Wirastuti F, Iskandar K, Mardin N, et al. Clinical profile of congenital rubella syndrome in Yogyakarta, Indonesia. Pediatr Int. 2018 Feb;60(2):168–72. doi: 10.1111/ped.13444

6. Herini ES, Triono A, Iskandar K, Prasetyo A, Nugrahanto AP, Gunadi. Congenital Rubella Syndrome Surveillance After Measles Rubella Vaccination Introduction in Yogyakarta, Indonesia. The Pediatric Infectious Disease Journal. 2021 Dec;40(12):1144–50. doi: 10.1097/INF.0000000000003290

7. Direktur Jendral Pencegahan Dan Pengendalian Penyakit. Keputusan Direktur Jendral Pencegahan Dan Pengendalian Penyakit Nomor Hk. 02.02/C/5096/2022 Tentang Penunjukan Rumah Sakit Surveilans Sentinel Congenital Rubella Syndrome. Kementerian Kesehatan Republik Indonesia; 2022.

8. 2018-surveillance-guidelines-rubellasyndrome-bahasa.pdf [Internet]. [cited 2022 Dec 30]. Available from: https://www.who. int/docs/default-source/searo/indonesia/ non-who-publications/2018-surveillanceguidelines-rubella-syndrome-bahasa. pdf?sfvrsn=d0b7169e_2

9. Svensson B, Idvall E, Nilsson F, Liuba P. HealthRelated Quality of Life in Children With Earlier Surgical Repair for Right Ventricular Outflow Tract Anomalies and the Agreement Between Children and Their Parents. Front Cardiovasc Med. 2020 Apr 28;7:66. doi: 10.3389/ fcvm.2020.00066

10. Chak M, Rahi J. The health-related quality of life of children with congenital cataract: Findings of the British Congenital Cataract Study. The British journal of ophthalmology. 2007 Aug 1;91:922–6. doi: 10.1136/bjo.2006.109603

11. Le H, Petersen S, Mensah F, Gold L, Wake M, Reilly S. Health-Related Quality of Life in Children With Low Language or Congenital Hearing Loss, as Measured by the PedsQL and Health Utility Index Mark 3. Value in Health. 2019 Oct 1;23. doi: 10.1016/j.jval.2019.07.019

12. Varni JW, Burwinkle TM, Seid M, Skarr D. The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr. 2003 Dec;3(6):329–41. doi: 10.1367/1539-4409(2003)003<_x0030_329:tpaapp> 2.0.co;2

13. Izzah AN, Irwanto I, Andriati A, Gunawan PI. Assessment Quality of Life in Children with Cerebral Palsy, Ages 2–18 Years. Jurnal Berkala Epidemiologi. 2021 May 25;9(2):166–74. doi: https://doi.org/10.20473/jbe.V9I22021.166-174

14. Kartawijaya AAP, Nugroho HW, Nur FT. Quality of Life in Children with Nephrotic Syndrome at Dr. Moewardi Hospital. Journal of Maternal and Child Health. 2021 Jul 16;6(3):344–52. doi: https://doi.org/10.26911/ thejmch.2021.06.03.09

15. Tantilipikorn P, Watter P, Prasertsukdee S. Feasibility, reliability and validity of the Thai version of the Pediatric Quality of Life Inventory 3.0 cerebral palsy module. Qual Life Res. 2013 Mar;22(2):415–21. doi: 10.1007/s11136-012- 0161-3

16. Yang X, Xiao N, Yan J. The PedsQL in pediatric cerebral palsy: reliability and validity of the Chinese version pediatric quality of life inventory 4.0 generic core scales and 3.0 cerebral palsy module. Qual Life Res. 2011 Mar;20(2):243–52. doi: 10.1007/s11136-010- 9751-0

17. Sugarda YB. Panduan Praktis Pelaksanaan Focus Group Discussion Sebagai Metode Riset Kualitatif. Gramedia Pustaka Utama; 2020. 124 p.

18. Tümen Akyıldız S, Ahmed K. An Overview of Qualitative Research and Focus Group Discussion. International Journal of Academic Research in Education. 2021 May 7; doi: 10.17985/ijare.866762



DOI: https://doi.org/10.22146/jcoemph.80029

Article Metrics

Abstract views : 645 | views : 344

Refbacks

  • There are currently no refbacks.


Copyright (c) 2023 Journal of Community Empowerment for Health

Creative Commons License
This work is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.