PedsQL Article Summary
Title: Quality-of-Life Evaluation of Healthy Siblings of Children with Chronic Illness
Purpose:
A study by Dinleyici et al. (2020) used the PedsQL to measure the health-related quality of life (HrQoL) of siblings of children with chronic conditions.
Study Population:
Dinleyici et al. (2020) used a sample of 191 siblings of children with chronic conditions and 100 age-matched healthy siblings of healthy children as a control group. The chronic conditions included cerebral palsy, hematologic/oncologic conditions, asthma, type 1 diabetes, celiac disease, and epilepsy.
Methods:
Siblings of healthy children and siblings of children with chronic conditions, as well as the parents of the children in both groups, completed a self-reported PedsQL. The PedsQL looks at four domains including physical, social, and emotional health and school functioning. The parent and child forms were completed for each group. The researchers analyzed the domains by category: physical health, psychosocial health (including emotional, social, and school functioning), and total health (a summary of all four domains). Using SPSS, the data was analyzed through a variety of tests including the Shapiro-Wilkes test to reveal a normal distribution of test scores, therefore allowing the researchers to present data using the mean of the test scores and standard deviations. Chi-square and a t-test were used to compare the healthy control group to the test group. An analysis of variance (ANOVA) was used to analyze data between the chronic condition sub-categories as the data of the test group was not normally distributed. A P-value of p < 0.05 was identified and considered statistically significant.
Outcome Measure:
Pediatric Quality of Life Inventory 4.0 (PedsQL), translated into Turkish.
Intervention: None. The study was observational in nature.
Results:
The researchers concluded that the siblings of children with chronic conditions reported significantly lower PedsQL scores than the siblings of healthy children. In addition, the researchers had the parents of each group of siblings complete the PedsQL and discovered a significant difference in the reported quality of life of the sibling and that of what the parent perceived the quality of life of the sibling to be. Differences were also found within the chronic condition subcategories. Siblings of children with cerebral palsy or hematologic/oncologic conditions had a lower self-reported health-related quality of life than the siblings of children with asthma, celiac disease, epilepsy, or diabetes. The researchers concluded that the severity of the disease of the child with the chronic condition may influence the quality of life of the healthy sibling.
Strengths/Limitations:
Limitations to the study include the lack of assessment for disease severity and the small number of participants in each chronic illness subgroup. The major strength of the article is the representation of a diverse population of chronic conditions. Most studies looking at sibling HrQoL focus on one condition; by looking at a variety of conditions, the researchers can present the reader with a fuller picture on the impact of having a sibling with a chronic condition and expand the results to the greater population.
Conclusion:
The overall results of the research delineate a lower HrQoL in siblings of children with chronic conditions compared to healthy age-matched controls. Oftentimes, the parents of these children will incorrectly perceive the state of the healthy sibling. The healthy sibling may not receive the care they need or may downplay the severity of their own illnesses when sick. More research into the impact of having a sibling with a chronic condition should be conducted, especially regarding outcomes and looking into the additional needs of families with a child who has a chronic condition.
Reference:
Dinleyici M, Çarman KB, Özdemir C, et al. Quality-of-life Evaluation of Healthy Siblings of Children with Chronic Illness. Balkan Med J. 2019;37(1):34-42. doi:10.4274/balkanmedj.galenos.2019.2019.7.142
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