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Quality of Life Research

Erschienen in:

01.03.2012

Development of the PedsQL™ sickle cell disease module items: qualitative methods

verfasst von: Julie A. Panepinto, Sylvia Torres, James W. Varni

Erschienen in: Quality of Life Research | Ausgabe 2/2012

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Abstract

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.

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The number of items might change as a function of the quantitative analyses.

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Titel: Development of the PedsQL™ sickle cell disease module items: qualitative methods
verfasst von: Julie A. Panepinto
Sylvia Torres
James W. Varni
Publikationsdatum: 01.03.2012
Verlag: Springer Netherlands
Erschienen in: Quality of Life Research / Ausgabe 2/2012
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-011-9941-4

Springer Medizin

Abstract

Purpose

Methods

Results

Conclusions

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