Behavioral Problems, Quality of Life and Caregiver Burden in Children with Idiopathic Nephrotic Syndrome: Improving Outc
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CLINICAL BRIEF
Behavioral Problems, Quality of Life and Caregiver Burden in Children with Idiopathic Nephrotic Syndrome: Improving Outcomes by Pragmatic Interventions in a Resource-Poor Setting Janaki Menon 1
&
Nithya Thuruthiyath 1 & Anugraha Kannankulangara 1 & Rohini Kolady 2
Received: 22 December 2019 / Accepted: 7 September 2020 # Dr. K C Chaudhuri Foundation 2020
Abstract A cross-sectional questionnaire-based study was conducted on 38 children with idiopathic nephrotic syndrome. The prevalence and pattern of behavioral abnormalities was studied. Except in the conduct domain, the prevalence of behavioral problems was comparable with controls. Severe complications of disease and adverse drug effects were significantly associated with abnormal behavior. The Quality of life (QOL) of these children and their caregivers was assessed. It appeared to be unaffected by illness. Additional findings were high maternal literacy, no disruption of schooling, regular follow-up and good adherence to treatment. Behavioral problems in childhood nephrotic syndrome can be minimized by regular follow-up and supportive interventions to reduce caregiver burden. Such children and their caregivers can do well in terms of QOL, even in a resource-poor setting, with appropriate psycho-social support. Keywords Behavioral problems . Quality of life . Caregiver burden . Childhood nephrotic syndrome . Improving outcomes . Resource-poor setting
Introduction Childhood nephrotic syndrome is a chronic relapsing disease. With current treatment, the majority attain lasting remission and long-term prognosis is favourable [1]. Yet, immunosuppressive treatment, frequent hospital visits and lifestyle changes can cause behavioral problems and impact the quality of life (QOL) of these children and their caregivers [2]. There is a paucity of Indian data on the extent of the same during maintenance therapy and in stable remission.
Material and Methods This cross-sectional questionnaire-based study was conducted over 18 mo in the Pediatric Nephrology Clinic of a government teaching hospital in Kerala. Thirty eight children, with idiopathic * Janaki Menon [email protected] 1
Department of Pediatrics, Government Medical College, Thrissur, Kerala, India
2
Department of Community Medicine, Karuna Medical College, Palakkad, Kerala, India
nephrotic syndrome, aged 4 to 15 y, under follow-up for at least 6 mo, who were in remission and off high-dose steroid therapy for at least 2 wks were included. Children with underlying psychiatric disorders or intellectual disability were excluded. The controls were 41 age- and sex-matched children with minor illness attending the general pediatrics OPD or their healthy siblings. Screening for behavioral problems was done using the Strengths and Difficulties Questionnaire (SDQ). Borderline and abnormal scores were together considered as ‘high’. Children with high SDQ scores underwent further evaluation. Quality of Life (QOL) of children was assessed using KINDLR questionnaires. Both self-reported QOL of the ch
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