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Development of the PedsQL™ Sickle Cell Disease Module items: qualitative methods. Qual Life Res 2012 Mar;21(2):341-57 PMID: 21638090 PMCID: PMC3277645

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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

Panepinto JA, Torres S, Varni JW


Julie A. Panepinto MD, MSPH Professor in the Pediatrics department at Medical College of Wisconsin


2-s2.0-84862262918   27 Citations

MESH terms used to index this publication - Major topics in bold

Anemia, Sickle Cell
Child, Preschool
Qualitative Research
Quality of Life
Reproducibility of Results
Surveys and Questionnaires
jenkins-FCD Prod-310 bff9d975ec7f2d302586822146c2801dd4449aad