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.