Health Related Quality of Life of Parents Having Nephrotic Syndrome Children

Background: Nephrotic syndrome of children have deleterious effect on parents. But a very little attention had been paid to address the riddle. This study was conducted to assess health related quality of life (HRQoL) of the parents having children with nephrotic syndrome with clinical attributes of nephrotic syndrome and sociodemographic characteristics.

Methods: This cross-sectional study was conducted among 128 parents of nephrotic syndrome children selected consecutively following the purposive sampling method from three different health facilities of Dhaka city. The 36 items PedsQL Family Impact Questionnaire Module was used to measure parents’ HRQoL. Data were analyzed using SPSS software.

Results: This study revealed that 76% of the respondents were mothers and 24% were fathers. Among all respondents, 63.3% were housewives, 87.5% were Muslim and belonged to nuclear family (68%). Mean age of respondents was 24.19±4.67 years and more than one-third of them passed SSC (35.9%). Most of them (40%) lived in semi-pucca houses. Source of fund for health care expenditure was 37.5% from monthly income and remaining 62.5% from self-management. More than half of the children (56.2%) suffered from complications of nephrotic syndrome. Mean of frequency of relapse was 6.55±7.02 times and mean duration of treatment 4.27±5.04 years. We have found 6.3% parents had poor, 53.1% had below average, 34.3% had average and 6.3% had good health related quality of life. Among the parents, fathers showed good health related quality of life (p< 0.050) than mothers. Parents who completed post graduate study, had good HRQoL than illiterate parents. There was significant relationship with monthly family income and HRQoL (p<0.001). The study showed that parents living in semi-pucca and kacha houses were unlikely to develop HRQoL. Presence of complications of nephrotic syndrome found significant (p=.010) with HRQoL of parents. There was statistically significant relationship (p=0.02) between age of nephrotic children and HRQoL of parents. In terms of funding sources, parents who used their monthly income had good HRQoL (p<.001) than those who used their savings.

Conclusion: Nephrotic syndrome can affect the quality of life of parents in multiple domains od functioning. Findings of this study can support to improve the health-related quality of life of parents having nephrotic syndrome children.