Psycholocial factors and HRQL of SCD patients
PI: A. Wonkam
Team Investigator by site: TBA
Specific Aims: To be determined
Rationale
The contribution of psychosocial factors and general environment has been poorly investigated in Africa. Such measures are critical to put in context the influence of genetic factors with regard to clinical severity. In addition, the formal measurements of quality of life of SCD patients deserve specific exploration as this could help to influence policies and practices as well as research. For example, the caregiver report of the PedsQL could be a useful tool to capture changes in HRQL over time , and can stand as outcome measures of clinical trials. The recent development of SCD-specific HRQL instruments provides new opportunities to test these instrument in various SCD patient settings.