Evaluating the Quality of Life of 231 Children With Primary Nephrotic Syndrome and Assessing Parental Awareness of the Disease

Abstract

Objective: This study aims to investigate the quality of life of children with primary nephrotic syndrome (PNS), assess their parents' disease awareness, and provide a basis for the comprehensive management of children with PNS.Methods: A total of 231 children with PNS who were hospitalized in the Department of Pediatric Renal Rheumatology and Immunology in the ShengJing Hospital of the China Medical University from March 2019 to October 2020 were selected as the study subjects. The subjects and their parents were surveyed via a disease education and communication WeChat group and online questionnaire to investigate the children's quality of life, the needs of the parents, and their knowledge related to the disease.Results: In 93.51% of cases, the child's quality of life was affected, with mild to moderate effects being the most frequent (90.47%). The lowest overall quality of life scores were recorded for children who had been diagnosed 1–3 year prior to inclusion in the study, and the scores plateaued thereafter. On the physical functioning scale, the longer the illness, the greater the physical impact, with children typically experiencing pain and fatigue. The children generally scored low on the emotional functioning scale, exhibiting sleep disturbances for up to 5 years and worrying about accidents. The children's average score on the social functioning scale was high, with males achieving significantly higher scores (69.61 ± 25.42) than females (62.30 ± 27.51), and more than one-third of the children experiencing problems getting along with other teenagers and making friends. The primary problems expressed by parents were anxiety (59%), sadness (44%), fear (43%), and depression (40%), and several parents indicated that they struggled with issues of self-blame.Conclusion: PNS impacts the physical and psychological wellbeing of children suffering from the condition, significantly reduces their quality of life, and negatively impacts the psychological wellbeing of their parents. Therefore, children with PNS and their families need integrated management by doctors, nurses, dieticians, psychotherapists, educational institutions, and social stakeholders to improve their quality of life.

Assessment of health-related quality of life in Sudanese children with nephrotic syndrome: a questionnaire-based study

“…The school functioning of the patients was the lowest which is coherent with the outcomes of Selewski et al . [ 5 ] and a recent study of 231 Chinese children with NS [ 19 ] and a recent report from India [ 20 ]. All school children with NS in this study missed school to go to the hospital or because not feeling good however, most of them did not show difficulties in class and did not have trouble with homework.…”

“…The physical functioning of our studied group was considerably lower than controls. Li et al ; reported that most of the children in their report faced a negative impact of NS on physical activity [ 19 ]. In a former study of children with SLE, Moorthy et al .…”

“…In a former study of children with SLE, Moorthy et al . [ 15 , 19 ] indicated that steroids and other used drugs affected the QOL, leading to. embarrassment of growth, which in turn caused the inability to contribute to physical activities.…”

“…In the present work gender of the patients did not affect scores of all domains and summary scores which is consistent with findings of the Egyptian cohort of 100 NS children from Egypt [ 8 ] but in contradiction with Li et al . who described superior scores in males matched to females in all domains [ 19 ]. Disparities in sample size, disease period, clinical presentation, and health care services delivered in diverse countries might justify the different consequences between studies.…”

Therapeutic trials in difficult to treat steroid sensitive nephrotic syndrome: challenges and future directions

“…With the average age of onset of NS at 3 years, however, many children could endure a decade or more of relapsing disease with repeated exposure to corticosteroids, steroidsparing therapeutics, and their associated side effects. This ultimately leads to a significant health care burden and reduced quality of life and children would benefit from induction of long-term remission early in the disease course [2,8].…”