Participants and Procedure
Research participants were recruited from a comprehensive sickle cell program at a local children’s hospital in Southeastern Virginia between July 2018 – February 2019. The inclusion criteria required patients and their parents to speak and read English fluently. For the patients specifically, the inclusion criteria were as follows: have a current diagnosis of SCD, be between the ages of 8 – 17 years old, and to not have been diagnosed with any comorbid developmental disabilities. Parents had to be at least 18 years old and identify themselves as the legal guardian. Caregivers who were not the biological parents, but had legal guardianship were allowed to participate in this study. For this reason, the word “parent” and “caregiver” are used interchangeably. Parents and caregivers were excluded from participating this study if they did not meet the inclusion criteria.
As families agreed to participate in the study, patients signed assent and parents signed consent forms. Afterwards, patients were asked to complete the Pediatric Quality of Life Scale (PedsQL) 3.0 SCD questionnaire, while parents completed a demographic information questionnaire. Lastly, as families completed the questionnaires, the recruiter reviewed the documents for completeness and proceeded to review the patient’s electronic medical record (EMR) for the retrospective chart review. A full description of the PedsQL 3.0 SCD module, demographic information questionnaire, and chart review are provided further in the document.