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Gepubliceerd in: Quality of Life Research 8/2020

03-02-2020

Health-related quality of life in Egyptian children with nephrotic syndrome

Auteurs: Riham Eid, Aya Ahmed Fathy, Nashwa Hamdy

Gepubliceerd in: Quality of Life Research | Uitgave 8/2020

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Abstract

Purpose

This research aimed to evaluate Quality of life (QoL) in Egyptian children with idiopathic Nephrotic syndrome (INS) in comparison to healthy children and children with chronic non-renal illnesses.

Methods

In this questionnaire-based study, 300 children were included, 100 with INS and 2 matched control groups: healthy group, and chronic non-renal illness group. QoL was assessed using the Pediatric Quality of Life Inventory (PedsQL™ 4.0 Generic Core Scales) and the Generic Children’s QoL Measure (GCQ).

Results

All mean scores of PedsQL domains in INS group were significantly higher than chronic non-renal illness group and significantly lower than the healthy control group (p =  < 0.001) for all and similar results reported also regarding GCQ scores in INS compared to diseased (p = 0.02) and healthy controls (p = 0.006). Steroid-resistant NS group had lowest scores in all domains (p =  < 0.001) compared to other clinical phenotypes of NS group. The long duration of illness, higher number of relapses, high cumulative steroid dose, and high number of medications used were associated with lower PedsQL and GCQ scores (p < 0.001 for all)

Conclusion

This is the first study to asses QoL in Egyptian children with INS and correlates QoL scores to clinical phenotypes and complications of the disease. Egyptian children with INS need strenuous efforts from pediatricians and psychiatrists to improve QoL. Both PedsQL™ 4.0 scale and GCQ are simple, convenient, and can be used in daily clinical practice to asses QoL in children with NS.
Literatuur
1.
go back to reference Eddy, A. A., & Symons, J. M. (2003). Nephrotic syndrome in childhood. Lancet,362(9384), 629–639.PubMed Eddy, A. A., & Symons, J. M. (2003). Nephrotic syndrome in childhood. Lancet,362(9384), 629–639.PubMed
2.
go back to reference Neuhaus, T. J., Fay, J., Dillon, M. J., Trompeter, R. S., & Barratt, T. M. (1994). Alternative treatment to corticosteroids in steroid sensitive idiopathic nephrotic syndrome. Archive of Diseases in Childhood,71(6), 522–526. Neuhaus, T. J., Fay, J., Dillon, M. J., Trompeter, R. S., & Barratt, T. M. (1994). Alternative treatment to corticosteroids in steroid sensitive idiopathic nephrotic syndrome. Archive of Diseases in Childhood,71(6), 522–526.
3.
go back to reference Lewis, M. A., Baildom, E. M., Davis, N., Houston, I. B., & Postlethwaite, R. J. (1989). Nephrotic syndrome: from toddlers to twenties. Lancet,1, 255.PubMed Lewis, M. A., Baildom, E. M., Davis, N., Houston, I. B., & Postlethwaite, R. J. (1989). Nephrotic syndrome: from toddlers to twenties. Lancet,1, 255.PubMed
5.
go back to reference Gerson, A. C., Wentz, A., Abraham, A. G., Mendley, S. R., Hooper, S. R., Bulter, R. W., et al. (2010). Health-related quality of life of children with mild to moderate chronic kidney disease. Pediatrics,125(2), 349–357. Gerson, A. C., Wentz, A., Abraham, A. G., Mendley, S. R., Hooper, S. R., Bulter, R. W., et al. (2010). Health-related quality of life of children with mild to moderate chronic kidney disease. Pediatrics,125(2), 349–357.
6.
go back to reference Mckenna, A. M., Keating, L. E., Vigneux, A., Stevens, S., Williams, A., & Geary, D. F. (2006). Quality of life in children with chronic kidney disease-patient and caregiver. Nephrology Dialysis Transplantation,21(7), 1899–1905. Mckenna, A. M., Keating, L. E., Vigneux, A., Stevens, S., Williams, A., & Geary, D. F. (2006). Quality of life in children with chronic kidney disease-patient and caregiver. Nephrology Dialysis Transplantation,21(7), 1899–1905.
7.
go back to reference Mujais, S., Story, K., & Finkelstein, F. (2009). Health-Related Quality of Life in CKD patients: Correlates and evolution over time. Clinical Journal of American Society of Nephrology,4(8), 1293–1301. Mujais, S., Story, K., & Finkelstein, F. (2009). Health-Related Quality of Life in CKD patients: Correlates and evolution over time. Clinical Journal of American Society of Nephrology,4(8), 1293–1301.
8.
go back to reference Assadi, F. (2013). Psychological impact of CKD among children and adolescents: Not rare and not benign. Journal of Nephropathology,2(1), 1–3.PubMedPubMedCentral Assadi, F. (2013). Psychological impact of CKD among children and adolescents: Not rare and not benign. Journal of Nephropathology,2(1), 1–3.PubMedPubMedCentral
9.
go back to reference Park, K. S., Hwang, Y. J., Cho, M. H., Ko, C. W., Ha, I. S., Hang, H. J., et al. (2012). Quality of life in children with end stage renal disease based on a PedsQL ESRD module. Pediatric Nephrology,27(12), 2293–2300.PubMed Park, K. S., Hwang, Y. J., Cho, M. H., Ko, C. W., Ha, I. S., Hang, H. J., et al. (2012). Quality of life in children with end stage renal disease based on a PedsQL ESRD module. Pediatric Nephrology,27(12), 2293–2300.PubMed
10.
go back to reference Bakr, A., Amr, M., Sarhan, A., Hammad, A., Ragab, M., El-Refaey, A., et al. (2007). Psychiatric disorders in children with chronic renal failure. Pediatric Nephrology.,22(1), 128–131.PubMed Bakr, A., Amr, M., Sarhan, A., Hammad, A., Ragab, M., El-Refaey, A., et al. (2007). Psychiatric disorders in children with chronic renal failure. Pediatric Nephrology.,22(1), 128–131.PubMed
11.
go back to reference Amr, M., Bakr, A., El Gilany, A. H., Hammad, A., El-Refaey, A., & El-Mougy, A. (2009). Multi-method assessment of behavior adjustment in children with chronic kidney disease. Pediatric Nephrology,24(2), 341–347.PubMed Amr, M., Bakr, A., El Gilany, A. H., Hammad, A., El-Refaey, A., & El-Mougy, A. (2009). Multi-method assessment of behavior adjustment in children with chronic kidney disease. Pediatric Nephrology,24(2), 341–347.PubMed
12.
go back to reference Agrawal, S., Krishnamurthy, S., & Naik, B. N. (2017). Assessment of quality of life in children with nephrotic syndrome at a teaching hospital in South India. Saudi Journal of Kidney Diseases and Transplantation.,28(3), 593–598.PubMed Agrawal, S., Krishnamurthy, S., & Naik, B. N. (2017). Assessment of quality of life in children with nephrotic syndrome at a teaching hospital in South India. Saudi Journal of Kidney Diseases and Transplantation.,28(3), 593–598.PubMed
13.
go back to reference Selewski, D. T., Troost, J. P., Massengill, S. F., Gbadegesin, R. A., Greenbaum, L. A., Shatat, I. F., et al. (2015). The impact of disease duration on quality of life in children with nephrotic syndrome: A Midwest Pediatric Nephrology Consortium study. Pediatric Nephrology,30(9), 1467–1476.PubMed Selewski, D. T., Troost, J. P., Massengill, S. F., Gbadegesin, R. A., Greenbaum, L. A., Shatat, I. F., et al. (2015). The impact of disease duration on quality of life in children with nephrotic syndrome: A Midwest Pediatric Nephrology Consortium study. Pediatric Nephrology,30(9), 1467–1476.PubMed
14.
go back to reference Roussel, A., Delbet, J. D., Micheland, L., Deschênes, G., Decramer, S., & Ulinski, T. (2019). Quality of life in children with severe forms of idiopathic nephrotic syndrome in stable remission—A cross-sectional study. Acta Paediatricia,108(12), 2267–2273. Roussel, A., Delbet, J. D., Micheland, L., Deschênes, G., Decramer, S., & Ulinski, T. (2019). Quality of life in children with severe forms of idiopathic nephrotic syndrome in stable remission—A cross-sectional study. Acta Paediatricia,108(12), 2267–2273.
15.
go back to reference Gipson, D. S., Selewski, D. T., Massengill, S. F., Wickman, L., Messer, K. L., Herreshoff, E., et al. (2013). Gaining the PROMIS perspective from children with nephrotic syndrome: A Midwest pediatric nephrology consortium study. Health and Quality of Life Outcomes,11(1), 30.PubMedPubMedCentral Gipson, D. S., Selewski, D. T., Massengill, S. F., Wickman, L., Messer, K. L., Herreshoff, E., et al. (2013). Gaining the PROMIS perspective from children with nephrotic syndrome: A Midwest pediatric nephrology consortium study. Health and Quality of Life Outcomes,11(1), 30.PubMedPubMedCentral
16.
go back to reference Rahman, M., Afroz, S., Ali, R., & Hanif, M. (2016). Health related quality of life in children with nephrotic syndrome in Bangladesh. Mymensingh Medical Journal,25(4), 703–709.PubMed Rahman, M., Afroz, S., Ali, R., & Hanif, M. (2016). Health related quality of life in children with nephrotic syndrome in Bangladesh. Mymensingh Medical Journal,25(4), 703–709.PubMed
17.
go back to reference Kaddah, A., Sabry, S., Emil, E., & El-Refaey, M. (2012). Epidemiology of primary nephrotic syndrome in Egyptian children. Journal of Nephrology.,25(5), 732–737.PubMed Kaddah, A., Sabry, S., Emil, E., & El-Refaey, M. (2012). Epidemiology of primary nephrotic syndrome in Egyptian children. Journal of Nephrology.,25(5), 732–737.PubMed
18.
go back to reference Bakr, A., Eid, R., Sarhan, A., Hammad, A., El-Refaey, A. M., El-Mougy, A., et al. (2014). Pathological profile of biopsied Egyptian children with primary nephrotic syndrome: 15-year single center experience. Journal of Nephrology,27(4), 419–423.PubMed Bakr, A., Eid, R., Sarhan, A., Hammad, A., El-Refaey, A. M., El-Mougy, A., et al. (2014). Pathological profile of biopsied Egyptian children with primary nephrotic syndrome: 15-year single center experience. Journal of Nephrology,27(4), 419–423.PubMed
19.
go back to reference Schwartz, G. J., Brion, L. B., & Spitzer, A. (1987). The use of plasma creatinine concentration for estimating glomerular filtration rate in infants, children, and adolescents. Pediatric Clinics of North America,34, 571–590.PubMed Schwartz, G. J., Brion, L. B., & Spitzer, A. (1987). The use of plasma creatinine concentration for estimating glomerular filtration rate in infants, children, and adolescents. Pediatric Clinics of North America,34, 571–590.PubMed
20.
go back to reference The primary nephrotic syndrome in children. (1981). Identification of patients with minimal change nephrotic syndrome from initial response to prednisone. A report of the International Study of Kidney Disease in Children. Journal of Pediatrics,98, 561–564. The primary nephrotic syndrome in children. (1981). Identification of patients with minimal change nephrotic syndrome from initial response to prednisone. A report of the International Study of Kidney Disease in Children. Journal of Pediatrics,98, 561–564.
22.
go back to reference Barlow, S. E., & the Expert Committee,. (2007). Expert committee recommendations regarding the prevention, assessment, and treatment of child and adolescent overweight and obesity: Summary report. Pediatrics,120(4), 164–192. Barlow, S. E., & the Expert Committee,. (2007). Expert committee recommendations regarding the prevention, assessment, and treatment of child and adolescent overweight and obesity: Summary report. Pediatrics,120(4), 164–192.
23.
go back to reference El-Ziny, M. A., Al-Tonbary, Y. A., Salama, O. S., Bakr, A., Al-Marsafawy, H., & Elsharkawy, A. A. (2007). Low bone mass in children with malignant lymphoma. Pediatric Hematology and Oncology,24(8), 577–585.PubMed El-Ziny, M. A., Al-Tonbary, Y. A., Salama, O. S., Bakr, A., Al-Marsafawy, H., & Elsharkawy, A. A. (2007). Low bone mass in children with malignant lymphoma. Pediatric Hematology and Oncology,24(8), 577–585.PubMed
24.
go back to reference Binkley, N., Bilezikian, J. P., Kendler, D. L., Leib, E. S., Lewiecki, E. M., Petak, S. M., et al. (2006). Official position of the international Society for clinical Densitometry and Excutive summary of the 2005 position development Conference. Journal of Clinical Denistiometry,9(1), 4–14. Binkley, N., Bilezikian, J. P., Kendler, D. L., Leib, E. S., Lewiecki, E. M., Petak, S. M., et al. (2006). Official position of the international Society for clinical Densitometry and Excutive summary of the 2005 position development Conference. Journal of Clinical Denistiometry,9(1), 4–14.
25.
go back to reference Elalfy, M. S., Farid, M. N., Labib, J. H., & RezkaAllah, H. K. (2014). Quality of life of Egyptian b-Thalassemia major children and adolescents. Egyptian Journal of Hematology,39, 222–226. Elalfy, M. S., Farid, M. N., Labib, J. H., & RezkaAllah, H. K. (2014). Quality of life of Egyptian b-Thalassemia major children and adolescents. Egyptian Journal of Hematology,39, 222–226.
26.
go back to reference Danielsen, A. K., Pommergaard, H. C., Burcharth, J., Angenete, E., & Rosenberg, J. (2015). Translation of questionnaires measuring health related quality of life is not standardized: A literature-based research study. PLoS ONE,10(5), e0127050.PubMedPubMedCentral Danielsen, A. K., Pommergaard, H. C., Burcharth, J., Angenete, E., & Rosenberg, J. (2015). Translation of questionnaires measuring health related quality of life is not standardized: A literature-based research study. PLoS ONE,10(5), e0127050.PubMedPubMedCentral
27.
go back to reference Collier, J., & MacKinlay, D. (2008). Generic children’s quality of life measure (GCQ) professional manual. Oxford: Hogrefe Ltd. Collier, J., & MacKinlay, D. (2008). Generic children’s quality of life measure (GCQ) professional manual. Oxford: Hogrefe Ltd.
28.
go back to reference Collier, J., Mackinlay, D., & Phillips, D. (2000). Norm values for the generic children’s quality of life measure (GCQ) from a large school-based sample. Quality of Life Research,9(6), 617–623.PubMed Collier, J., Mackinlay, D., & Phillips, D. (2000). Norm values for the generic children’s quality of life measure (GCQ) from a large school-based sample. Quality of Life Research,9(6), 617–623.PubMed
29.
go back to reference University of Nottingham. School of Human Development. Division of Child Health, Children’s Quality of Life: United Kingdom Normative Data for the Generic Children’s Quality of Life Measure (GCQ), 1997–1998. Colchester: UK Data Archive. March 2013. SN 4412. University of Nottingham. School of Human Development. Division of Child Health, Children’s Quality of Life: United Kingdom Normative Data for the Generic Children’s Quality of Life Measure (GCQ), 1997–1998. Colchester: UK Data Archive. March 2013. SN 4412.
30.
go back to reference Euler, H. A. (2003). A psychologist’s look at health-related quality-of-life assessment in children. In G. M. O’Donoghue, S. Archbold (Eds.) Measuring the immeasurable? Proceedings of a Conference on Quality of Life in Deaf Children (pp. 45–53). Oxford: Hughes associates. Euler, H. A. (2003). A psychologist’s look at health-related quality-of-life assessment in children. In G. M. O’Donoghue, S. Archbold (Eds.) Measuring the immeasurable? Proceedings of a Conference on Quality of Life in Deaf Children (pp. 45–53). Oxford: Hughes associates.
31.
go back to reference Heath, J., MacKinlay, D., Watson, A. R., Hames, A., Wirz, L., Scott, S., et al. (2011). Self-reported quality of life in children and young people with chronic kidney disease. Pediatric Nephrology,26(5), 767–773.PubMed Heath, J., MacKinlay, D., Watson, A. R., Hames, A., Wirz, L., Scott, S., et al. (2011). Self-reported quality of life in children and young people with chronic kidney disease. Pediatric Nephrology,26(5), 767–773.PubMed
32.
go back to reference Maxwell, H., MacKinlay, D., & Watson, A. R. (2009). Quality of life or health status in children with chronic kidney disease. Pediatric Nephrology,25(6), 1191–1192.PubMed Maxwell, H., MacKinlay, D., & Watson, A. R. (2009). Quality of life or health status in children with chronic kidney disease. Pediatric Nephrology,25(6), 1191–1192.PubMed
33.
go back to reference Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQLTM 4.0: Reliability and validity of the pediatric quality of life inventoryTM version 4.0 generic core scales in healthy and patient populations. Medical Care,39(8), 800–812.PubMed Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQLTM 4.0: Reliability and validity of the pediatric quality of life inventoryTM version 4.0 generic core scales in healthy and patient populations. Medical Care,39(8), 800–812.PubMed
34.
go back to reference Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambulatory Pediatrics,3, 329–341.PubMed Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambulatory Pediatrics,3, 329–341.PubMed
35.
go back to reference Rüth, E. M., Landolt, M. A., Neuhaus, T. J., & Kemper, M. J. (2004). Health-related quality of life and psychosocial adjustment in steroid-sensitive nephrotic syndrome. Journal of Pediatrics,145(6), 778–783. Rüth, E. M., Landolt, M. A., Neuhaus, T. J., & Kemper, M. J. (2004). Health-related quality of life and psychosocial adjustment in steroid-sensitive nephrotic syndrome. Journal of Pediatrics,145(6), 778–783.
36.
go back to reference Ozkaya, N., Cakar, N., Ekim, M., Kara, N., Akkok, N., & Yalcinkaya, F. (2004). Primary nephrotic syndrome during childhood in Turkey. Pediatric International,46(4), 436–438. Ozkaya, N., Cakar, N., Ekim, M., Kara, N., Akkok, N., & Yalcinkaya, F. (2004). Primary nephrotic syndrome during childhood in Turkey. Pediatric International,46(4), 436–438.
37.
go back to reference Mattoo, T. K., Mahmood, M. A., & Al-Harbi, M. S. (1990). Nephrotic syndrome in Saudi children: clinicopathological study of 150 cases. Pediatric Nephrology,4(5), 517–519.PubMed Mattoo, T. K., Mahmood, M. A., & Al-Harbi, M. S. (1990). Nephrotic syndrome in Saudi children: clinicopathological study of 150 cases. Pediatric Nephrology,4(5), 517–519.PubMed
38.
go back to reference Solarin, A., Adekunle, M., Gbelee, H., Animashaun, A., & Njokanma, F. (2019). SAT-316 Health related quality of life of children with nephrotic syndrome in Lagos. Nigeria. Kidney International Reports,4(7), S140. Solarin, A., Adekunle, M., Gbelee, H., Animashaun, A., & Njokanma, F. (2019). SAT-316 Health related quality of life of children with nephrotic syndrome in Lagos. Nigeria. Kidney International Reports,4(7), S140.
39.
go back to reference Mbanefo, N. R., Odetunde, O. I., Okafor, H. U., Oguonu, T., Ikefuna, A. N., Ubesie, A. C., et al. (2018). The clinical parameters affecting the health-related quality of life of children with nephrotic syndrome. Archives of Nephrology,1(1), 11–18. Mbanefo, N. R., Odetunde, O. I., Okafor, H. U., Oguonu, T., Ikefuna, A. N., Ubesie, A. C., et al. (2018). The clinical parameters affecting the health-related quality of life of children with nephrotic syndrome. Archives of Nephrology,1(1), 11–18.
40.
go back to reference Mishra, K., Ramachandran, S., Firdaus, S., & Rath, B. (2015). The impact of pediatric nephrotic syndrome on parents' health-related quality of life and family functioning: an assessment made by the PedsQL 4.0 family impact module. Saudi Journal of Kidney Diseases and Transplantation,26(2), 285–292.PubMed Mishra, K., Ramachandran, S., Firdaus, S., & Rath, B. (2015). The impact of pediatric nephrotic syndrome on parents' health-related quality of life and family functioning: an assessment made by the PedsQL 4.0 family impact module. Saudi Journal of Kidney Diseases and Transplantation,26(2), 285–292.PubMed
41.
go back to reference Didsbury, M. S., Kim, S., Medway, M. M., Tong, A., McTaggart, S. Y., Walker, A. M., et al. (2016). Socio-economic status and quality of life in children with chronic disease: A systematic review. Journal of Pediatrics and Child Health,52(12), 1062–1069. Didsbury, M. S., Kim, S., Medway, M. M., Tong, A., McTaggart, S. Y., Walker, A. M., et al. (2016). Socio-economic status and quality of life in children with chronic disease: A systematic review. Journal of Pediatrics and Child Health,52(12), 1062–1069.
42.
go back to reference Heath, J., Norman, P., Christian, M., & Watson, A. (2017). Measurement of quality of life and attitudes towards illness in children and young people with chronic kidney disease. Quality of Life Research,26(9), 2409–2419.PubMed Heath, J., Norman, P., Christian, M., & Watson, A. (2017). Measurement of quality of life and attitudes towards illness in children and young people with chronic kidney disease. Quality of Life Research,26(9), 2409–2419.PubMed
43.
go back to reference Riano-Galan, I., Malaga, S., Rajmil, L., Ariceta, G., Navarro, M., Loris, C., et al. (2009). Quality of life of adolescents with end-stage renal disease and kidney transplant. Pediatric Nephrology,24(8), 1561–1568.PubMed Riano-Galan, I., Malaga, S., Rajmil, L., Ariceta, G., Navarro, M., Loris, C., et al. (2009). Quality of life of adolescents with end-stage renal disease and kidney transplant. Pediatric Nephrology,24(8), 1561–1568.PubMed
44.
go back to reference Gupta, M., Nanda, S., & Kaushik, J. S. (2013). Quality of life in symptomatic HIV infected children. Indian Pediatrics,50(12), 1145–1147.PubMed Gupta, M., Nanda, S., & Kaushik, J. S. (2013). Quality of life in symptomatic HIV infected children. Indian Pediatrics,50(12), 1145–1147.PubMed
Metagegevens
Titel
Health-related quality of life in Egyptian children with nephrotic syndrome
Auteurs
Riham Eid
Aya Ahmed Fathy
Nashwa Hamdy
Publicatiedatum
03-02-2020
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 8/2020
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-020-02438-0

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