Development of the PedsQL™ sickle cell disease module items: qualitative methods Academic Article uri icon


  • PURPOSE: The objective of this qualitative study was to develop the items and support the content validity of the PedsQL™ Sickle Cell Disease Module for pediatric patients with sickle cell disease (SCD). METHODS: The iterative process included multiphase qualitative methodology. A literature review on SCD was conducted to generate domains of interest for the individual in-depth interviews. Ten healthcare experts with clinical experience in SCD participated in the development of the conceptual framework. A total of 13 pediatric patients with SCD ages 5-18 and 18 parents of patients ages 2-18 participated in the individual in-depth interviews. A total of 33 pediatric patients with SCD ages 5-18 and 39 parents of patients ages 2-18 participated in individually conducted cognitive interviews that included both think aloud and cognitive debriefing techniques to assess the interpretability and readability of the item stems. RESULTS: Six domains were derived from the qualitative methods involving patient/parent interviews and expert opinion, with content saturation achieved, resulting in 48 items. The six domains consisted of items measuring Pain Intensity/Location (9 items), Pain Interference (11 items), Worry (7 items), Emotions (3 items), Disease Symptoms/Treatment, (12 items), and Communication (6 items). CONCLUSIONS: Qualitative methods involving pediatric patients and parents in the item development process support the content validity for the PedsQL™ SCD Module. The PedsQL™ SCD Module is now undergoing national multisite field testing for the psychometric validation phase of instrument development.

author list (cited authors)

  • Panepinto, J. A., Torres, S., & Varni, J. W.

citation count

  • 51

complete list of authors

  • Panepinto, Julie A||Torres, Sylvia||Varni, James W

publication date

  • June 2011