Main Article Content
Quality of life, Chronic Illness, Self-reported health status
Quality of life (QOL) may be defined as ones perception of his/her position in life in relation to personal expectations and desires. This definition takes into account the subjective and multifactorial nature of QoL. Recent studies have indicated that current QoL measurement tools do not adequately address the childs subjective perception. Based on this, we used the GapS questionnaire to identify disease-specific aspects of QoL and ascertain self-reported determinants of health (DOHs) in pediatric patients with chronic illnesses. We conducted 46 semi-structured interviews using the parent-child dyad approach in the rheumatology, orthopedics, gastroenterology (GI) and cystic fibrosis (CF) clinics at The Hospital for Sick Children (SickKids). Children were asked to determine items that were important to their health, and rank them on a visual analog scale (VAS). English speaking children between the ages of 5-18 years old were included in the study. There were significant differences in items related to physical activity between patients in CF and Rheumatology, indicating that there are differences in health related quality of life (HRQoL) determinants between different pediatric chronic diseases. There were also significant differences in the self-reported DOHs for items related to physical activity and items related to friends/family support between males and females. Socioeconomic status (SES) did not appear to play a role in the selection of self-reported DOHs but further studies must be done to address this possibility. Intriguingly, when comparing pediatric patients from the CF clinic with those in rheumatology, there were various self-reported DOHs that differed between the two groups, indicating that disease specific measures may play an important role in assessing QoL in pediatric patients. In conclusion, our findings suggest that measurement of HRQOL is subjective and individualistic in nature, and that disease-specific determinants do exist.