DOI: https://dx.doi.org/10.18203/2349-3291.ijcp20220452
Published: 2022-02-23

Health related quality of life in children and adolescents with sickle cell disease in central India

Nikita Suresh Gupta, Chandrakant M. Bokade

Abstract


Background: Sickle cell disease (SCD) is major health problem in central India. This is a single centre study conducted to assess the health-related quality of life (HRQOL) in children and adolescent with homozygous (SS pattern) and heterozygous (AS pattern) SCD with respect to healthy children.

Methods: This is a case control study conducted in a tertiary care hospital. Study group included total of 150 children and adolescents with SS pattern and AS pattern. HRQOL of the children in study group was compared with demographically matched 100 healthy children in comparison group. WHO-QOL BREF questionnaire was administered to both the groups to measure their HRQOL in various domains. Multivariable linear regression was used to account for socio-demographic factors influencing HRQOL.

Results: The WHO-QOL BREF scores of children with SS pattern were significantly lower than those obtained in the AS pattern and healthy children (p<0.001) in all studied domains (physical, psychological, social and environmental). The domain scores of HRQOL in children with AS pattern didn’t differ significantly as compared to healthy children. Results also highlighted that along with severity of disease, various demographic characteristics like age, gender, locality and socioeconomic status had significant impact on various domains of HRQOL

Conclusions: SCD has detrimental effect on HRQOL of growing children and adolescent that is compounded by various demographic and socio-environmental factors in a developing country.


Keywords


Quality of life, Sickle cell, Child, Adolescent

Full Text:

PDF

References


Hockham C, Bhatt S, Colah R, Mukherjee MB, Penman BS, Gupta S et al. The spatial epidemiology of sickle-cell anaemia in India. Sci Rep. 2018;8(1):17685.

Jain D, Italia K, Sarathi V, Ghoshand K, Colah R. Sickle cell anemia from central India: a retrospective analysis. Indian Pediatr. 2012;49(11):911-3.

Wrotniak B, Schall J, Brault M, Balmer D, Stallings V. Health-Related Quality of Life in Children with Sickle Cell Disease Using the Child Health Questionnaire. J Pediatric Health Care. 2014;28(1):14-22.

Asnani MR, Lipps GE, Reid ME. Utility of WHOQOL-BREF in measuring quality of life in sickle cell disease. Health Qual Life Outcomes. 2009;7:75.

Cella DF. Quality of life: concepts and definition. J Pain Symptom Manage. 1994;9(3):186-92.

Donna M, Lynne P, Victor B, John R, John A, James L et al. Health-related quality of life in sickle cell patients: The PiSCES project. Health Qual Life Outcomes. 2005;3:50.

Deore UA, Zade SB. Epidemiology of sickle cell disorder: The urban scenario in Maharashtra, India. Int J Public Health Epidemiol. 2013;2(5):101-7.

Panepinto J, Pajewski N, Foerster L, Sabnis S. Hoffmann R. Impact of family income and sickle cell disease on the health-related quality of life of children. Quality Life Res. 2008;18(1):5-13.

Agnihotri K, Awasthi S, Chandra H, Singh U, Thakur S. Validation of WHO QOLBREF instrument in Indian adolescents. Indian J Pediatr. 2010;77:381-6.

WHO, WHOQOL-BREF: introduction, administration, scoring and generic version of the assessment: field trial version. 1996. Available at: https://apps.who.int/iris/handle/10665/63529. Accessed on 2 January 2022.

Skevington S, Lotfy M. O'Connell K. The World Health Organization's WHOQOL-BREF quality of life assessment: Psychometric properties and results of the international field trial. A Report from the WHOQOL Group. Quality Life Res. 2004;13(2):299-310.

Dale JC, Cochran CJ, Roy L, Jernigan E, Buchanan GR. Health-related quality of life in children and adolescents with sickle cell disease. J Pediatr Health Care. 2011;25(4):208-15.

Abdel-Monhem Amr M, Tawfik AT, Al-Omair AO. Health related quality of life among adolescents with sickle cell disease in saudi arabia. Pan Afr Med J. 2011;8:10.

Julie P, Kerry O, Michael D, Loberiza LF, Scott JP. Health-related quality of life in children with sickle cell disease: child and parent perception. Br J Haematol. 2005;130(3):437-44.

Al Jaouni SK, Al Muhayawi MS, Halawa TF, Al Mehayawi MS. Treatment adherence and quality of life outcomes in patients with sickle cell disease. Saudi Med J. 2013;34(3):261-5.

Bhagat VM, Baviskar SR, Mudey AB, Goyal RC. Poor health related quality of life among patients of sickle cell disease. Indian J Palliat Care. 2014;20(2):107-11.

Colah RB, Mehta P, Mukherjee MB. Newborn Screening for Sickle Cell Disease: Indian Experience. Int J Neonatal Screen. 2018;4(4):31.

Hijmans CT, Fijnvandraat K, Oosterlaan J, Heijboer H, Peters M, Grootenhuis MA. Double disadvantage: a case control study on health-related quality of life in children with sickle cell disease. Health Qual Life Outcomes. 2010;8:121.

Barakat LP, Patterson CA, Daniel LC, Dampier C. Quality of life among adolescents with sickle cell disease: mediation of pain by internalizing symptoms and parenting stress. Health Qual Life Outcomes. 2008;6:60.

Dampier C, Lieff S, LeBeau P, Rhee S, McMurray M, Rogers Z et al. Health-related quality of life in children with sickle cell disease: A report from the comprehensive sickle cell centers clinical trial consortium. Pediatr Blood Cancer 2010;55:485-94.

Bills SE, Schatz J, Hardy SJ, Reinman L. Social-environmental factors and cognitive and behavioral functioning in pediatric sickle cell disease. Child Neuropsychol. 2020;26(1):83-99.

Telfair J, Haque A, Etienne M, Tang S, Strasser S. Rural/urban differences in access to and utilization of services among people in Alabama with sickle cell disease. Public Health Rep. 2003;118:27-36.

Unal S, Toros F, Kütük MÖ, Uyanıker MG. Evaluation of the psychological problems in children with sickle cell anemia and their families. Pediatr Hematol Oncol. 2011;28(4):321-8.

Sehlo MG, Kamfar HZ. Depression and quality of life in children with sickle cell disease: the effect of social support. BMC Psychiatry. 2015;15:78.

Rodrigue JR, Streisand R, Banko C, Kedar A, Pitel PA. Social functioning, peer relations, and internalizing and externalizing problems among youths with sickle cell disease. Children’s Health Care. 1996;25:37-52.

Noll RB, Kiska R, Reiter-Purtill J, Gerhardt CA, Vannatta K. A controlled, longitudinal study of the social functioning of youth with sickle cell disease. Pediatrics. 2010;125:e1453-9.

Barbarin OA, Christian M. The Social and Cultural Context of Coping with Sickle Cell Disease: I. A Review of Biomedical and Psychosocial Issues. J Black Psychol. 1999;25:277-93.

Palermo TM, Schwartz L, Drotar D, McGowan K. Parental report of health-related quality of life in children with sickle cell disease. J Behav Med. 2002;25(3):269-83.

Fuggle P, Shand PA, Gill LJ, Davies SC. Pain, quality of life, and coping in sickle cell disease. Arch Dis Child. 1996;75(3):199-203.

Didsbury MS, Kim S, Medway MM. Socio-economic status and quality of life in children with chronic disease: A systematic review. J Paediatr Child Health. 2016;52(12):1062-9.