Health Related Quality of Life

The accurate assessment and study of health-related quality of life (HRQOL) in SCD have recently come to the forefront as a critical issue for understanding psychosocial adjustment (Panepinto 2008). Two well-known questionnaires for the assessment of HRQOL have recently undergone validity studies for children with SCD; McClellan et al. (2008) used the Pediatric Quality of Life Inventory, and Panepinto et al. (2004) used the Child Health Questionnaire. Such studies confirm reports of poor HRQOL in youth with SCD compared with healthy peers, particularly in the realm of physical, psychological, and social well-being (Palermo et al. 2002). Additionally, when both parents and children were asked to assess HRQOL, parents rated their children as more severely limited in almost every domain than normative children (Panepinto et al. 2005). Findings such as these underscore the necessity of both parent- and child-report data when assessing

HRQOL and, as discussed in the previous section, the potential influence that parent adjustment may have on child adjustment.

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