Agreement between Parents and Children with Sickle Cell Disease in Rating Children’s Oral Health- Related Quality of Life - Abstract
Objectives: To evaluate the agreement between parents and children with sickle cell disease (SCD) in rating children’s oral health- related quality of life (OHRQoL).
Methods: A cross sectional study was conducted with children aged 8 to 14 years, from the referral center for hematology and transfusion services in Minas Gerais, Brazil, and their parents. OHRQoL were measured using the Child Perceptions Questionnaires at two ages, 8-10 and 11-14 years, and the Parent Child Perception Questionnaire. Wilcoxon signed Rank was used to calculate the Parent-child pair median difference. Also assessed were existing discrepancies between parent and child by using the mean of the directional differences. In order to determine the associations between child and parent OHRQoL scores, the Spearman Correlation Coefficient (rs) was used. When exploring the agreement proximity in relation to the characteristics of the children, the overall (rs) were calculated for individual characteristics, factors related to the disease, resources and oral conditions.
Results: The parents reported their children’s OHRQoL better than the children did. The agreement between younger children and parents ranged from poor to moderate. The dimensions with poor agreements in that age group were oral symptoms (rs=0.26), emotional well-being (rs=0.22) and well-being (rs=0.07). Teenagers and their parents had moderate agreements. Better agreements were observed in functional limitations (rs=0.57). Increased age, higher income, home ownership, car ownership, Caucasian and those with severe malocclusion (p<0.001) were factors that contributed to a higher level of agreement.
Conclusions: The parents under reported their children’s OHRQoL. However, the parents are considered to be crucial participants in health care for children with SCD. Considering the viewpoints of both parties involved is essential when obtaining a comprehensive view of the impact of oral health on SCD and children`s quality of life.