Perbandingan Self-Report dengan Caregiver-Report mengenai Health-Related Quality of Life Anak dengan Talasemia Mayor Usia 8-12 Tahun
Abstract
Penyakit kronis seperti talasemia telah diketahui memengaruhi kualitas hidup terkait kesehatan anak-anak. Jika anak belum mampu menilai kondisi kesehatannya sendiri, penilaian biasanya dilakukan oleh caregiver, terutama orang tua. Hanya saja, beberapa penelitian tidak menyarankan menggunakan laporan dari caregiver mengenai anak karena caregiver (terutama orang tua) cenderung menilai lebih tinggi atau lebih rendah kualitas hidup anaknya sehingga hasil penilaian berisiko tidak akurat dalam menggambarkan kualitas hidup anak yang sebenarnya. Penelitian ini bertujuan untuk membandingkan penilaian anak itu sendiri (self-report) dengan penilaian caregiver (caregiver-report) mengenai kualitas hidup terkait kesehatan anak dengan talasemia mayor. Penelitian dilakukan di Klinik Hemato Onkologi Anak RSUP Dr. Hasan Sadikin Bandung pada bulan April 2019. Sebanyak 50 pasien anak dengan talasemia mayor beserta caregiver-nya yang memenuhi kriteria mengisi kuesioner Pediatrics Quality of Life Inventory (PedsQL) 4.0. Ada empat dimensi yang diukur, yaitu fungsi fisik, emosional, sosial, dan sekolah. Perbandingan kualitas hidup terkait kesehatan antara self-report dengan caregiver-report menggunakan uji Wilcoxon Signed Ranks Test. Hasil yang diperoleh adalah tidak terdapat perbedaan yang signifikan pada skor total antara self-report dengan caregiver-report mengenai kualitas hidup terkait kesehatan anak dengan talasemia mayor usia 8–12 tahun (p=0,952), begitu pula pada skor kesehatan fisik (p=0,258), fungsi emosional (p=0,086), dan fungsi sekolah (p=0,470). Perbedaan signifikan hanya terdapat pada fungsi sosial (p=0,046), dengan skor rata-rata self-report lebih rendah dibandingkan caregiver-report. Hal ini menunjukkan bahwa pada kasus-kasus pasien anak tidak dapat mengisi sendiri, orang tua adalah penilai atas nama anak (proxy) yang cukup dapat diandalkan untuk menentukan kualitas hidup terkait kesehatan anak.
Kata kunci: Anak-anak, kualitas hidup terkait kesehatan, PedsQL, talasemia mayor
Comparison of Self-Report and Caregiver-Report Regarding Health-Related Quality of Life in Children with Major Thalassemia Aged 8–12 Years
Abstract
Thalassemia is a chronic illness known for influencing children’s health-related quality of life (HRQOL). The assessment of a child’s condition is usually carried out by their caregiver, especially parents when the child is unable to assess their health condition. However, some studies do not recommend using caregiver-report because caregivers (especially parents) tend to rate higher or lower on their child’s quality of life. Therefore, the results are at risk of being inaccurate in describing the child’s actual quality of life. The purpose of this study was to compare the child’s own assessment (self-report) with the caregiver’s assessment (caregiver-report) of HRQOL for children with major thalassemia. Furthermore, the study was conducted at the Pediatric Hemato Oncology Clinic Dr. Hasan Sadikin Hospital Bandung in April 2019. The Pediatrics Quality of Life Inventory (PedsQL) 4.0 was completed by a total of 50 pediatric patients with major thalassemia together with their caregivers. Also, four dimensions measured include; physical, emotional, social, and school functioning. Wilcoxon Signed Ranks test was used to compare HRQOL between self-report and caregiver-report. The result showed that there was no significant difference in total score between self-report and caregiver-report regarding HRQOL of children with major thalassemia ages 8–12 years p=0.952), as well as physical functioning (p=0.258), emotional functioning (p=0.086), and school functioning (p=0.470). However, a significant difference was only found in social functioning (p=0.046), where the average score of self-report was lower than the caregiver-report. Subsequently, this shows that in cases where the children are unable to complete the questionnaire themselves, parents are a reliable rater on behalf of the child (proxy) to determine the quality of life of the children.
Keywords: Children, health-related quality of life, major thalassemia, PedsQL
Keywords
Full Text:
PDF (Bahasa Indonesia)References
Kaheni S, Yaghobian M, Sharefzadah GH, Vahidi A, Ghorbani H, Abderahemi A. Quality of life in children with β-thalassemia major at center for special diseases. Iran J Pediatr Hematol Oncol. 2013;3(3):108–13.
Mariani D, Rustina Y, Nasution Y. Analisis faktor yang memengaruhi kualitas hidup anak thalassemia beta mayor. J Keperawatan Indones. 2014;17(1):1–10. doi: 10.7454/jki.v17i1.375
Poengoet BNSR, Sungkar E, Pandji TD. Quality of life in thalassemia major patients: Reliability and validity of Indonesian version of TranQol questionnaire. Int J Integr Heal Sci. 2017;5(2):75–9. doi: 10.15850/ijihs.v5n2.1011
Dahnil F, Mardhiyah A, Widianti E. Assessment of supportive care needs in parents of children with thalassemia. NurseLine J. 2017;2(1):1–10.
Ismail M, Chun CY, Shahar S, Manaf ZA, Rajikan R, Mohd Yusoff NA, et al. Quality of life among thalassaemia children, adolescent, and their caregivers. Sains Malaysiana. 2013;42(3):373–80.
Pranajaya R, Nurchairina N. Faktor yang berhubungan dengan kualitas hidup anak thalasemia. J Keperawatan. 2016;12(1):130–9. doi: 10.26630/jkep.v12i1.370
Hays RD, Reeve BB. Measurement and modeling of health-related quality of life. In: Killewo, Japhet; Heggenhougen, H. Kristian; Quah SR, editor. Epidemiology and demography in public health. San Diego: Elsevier Inc.; 2010.
Purba FD. Quality of life measurement and its application in Indonesia (disertasi). Rotterdam, Netherlands: Erasmus University Rotterdam; 2018.
Desai AD, Zhou C, Stanford S, Haaland W, Varni JW, Mangione-Smith RM. Validity and responsiveness of the pediatric quality of life inventory (PedsQL) 4.0 generic core scales in the pediatric inpatient setting. JAMA Pediatr. 2014;168(12):1114–21. doi: 10.1001/jamapediatrics.2014.1600
Deshpande PR, Rajan S, Sudeepthi BL, Nazir CPA. Patient-reported outcomes: A new era in clinical research. Perspect Clin Res. 2011;2(4):137-44. doi: 10.4103/2229-3485.86879
Marques JCB, Oliveira JA, Goulardins JB, Nascimento RO, Lima AM V, Casella EB. Comparison of child self-reports and parent proxy-reports on quality of life of children with attention deficit hyperactivity disorder. Health Qual Life Outcomes. 2013;11:186. doi: 10.1186/1477-7525-11-186
Stokes MA, Kornienko L, Scheeren AM, Koot HM, Begeer S. A comparison of children and adolescent’s self-report and parental report of the PedsQL among those with and without autism spectrum disorder. Qual Life Res. 2017;26(3):611–24. doi: 10.1007/s11136-016-1490-4
Najafi F, Zendehdel K, Mirzania M, Montazeri A. Self-reported versus proxy reported quality of life for breast cancer patients in the Islamic Republic of Iran. East Mediterr Heal J. 2017;22(11):786–93. doi: 10.26719/2016.22.11.786
Alcantara J, Ohm J, Alcantara J. Comparison of pediatric self reports and parent proxy reports utilizing PROMIS: Results from a chiropractic practice-based research network. Complement Ther Clin Pract. 2017;29:48–52. doi: 10.1016/j.ctcp.2017.08.003
Caocci G, Efficace F, Ciotti F, Roncarolo MG, Vacca A, Piras E, et al. Health related quality of life in Middle Eastern children with beta-thalassemia. BMC Blood Disord. 2012;12:6. doi: 10.1186/1471-2326-12-6
Mohamed IS, Daud NM. Examining moderating role of e-commerce experience on usage-performance relationship. Asia Pacific J Adv Bus Soc Stud. 2018;4(2):16–27.
Sanzone LA, Lee JY, Divaris K, Dewalt DA, Baker AD, Vann Jr WF. A cross sectional study examining social desirability bias in caregiver reporting of children’s oral health behaviors. BMC Oral Health. 2013;13(24):1–9. doi: 10.1186/1472-6831-13-24
Laho NS. Enhancing school-home communication through learning management system adoption: Parent and teacher perceptions and practices. Sch Community J. 2019;29(1):117–42.
Digital Object Identifier
DOI : https://doi.org/10.15416/ijcp.2021.10.1.50Dimension Citation Metrics Badge
Refbacks
- There are currently no refbacks.
Indonesian Journal of Clinical Pharmacy is indexed by
IJCP by Universitas Padjadjaran is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License
View My Stats
Refbacks
- There are currently no refbacks.
Indonesian Journal of Clinical Pharmacy is indexed by