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Author Spotlight: Quantifying Pain Experience – An Illustrative Approach Using the Pain Body Diagram

Author Spotlight: Quantifying Pain Experience – An Illustrative Approach Using the Pain Body Diagram

Published on: July 7, 2023

Content validation of observer-reported sickle cell pain diaries (SCPD-CS and SCPD-CN): results from interviews with

Michelle K White¹, April M Foster², Miranda Bailey³

¹QualityMetric Incorporated, LLC (Formerly Known As Optum Patient Insights), 1301 Atwood Ave, Suite 216E, Johnston, RI, USA.

Health and Quality of Life Outcomes

|November 18, 2021

Abstract

Background:

Patients with sickle cell disease (SCD) experience daily pain and acute episodes known as sickle cell pain crises (SCPCs). The Sickle Cell Pain Diary-Caregiver Report (SCPD-C) is an observer-reported diary for use by caregivers of children ages < 12 years with SCD. This study reports on the content validity of the SCPD-C.

Methods:

The SCPD-C was developed based on a literature review, measurement expert input, and a patient advisory board including clinicians. Three rounds of interviews (including both concept elicitation and cognitive debriefing methodologies) were conducted with caregivers of children with SCD aged < 12 to evaluate the content validity of the SCPD-C.

Results:

Across three rounds of interviews, caregivers confirmed concepts in the SCPD-C and described observed impacts that were important and were added. Overall, caregivers evaluated the SCPD-C as easy to understand, with some minor adaptations for clarity. Additionally, the diary was split into two versions based on the child's age and school enrollment status (SCPD-CS for school-aged and SCPD-CN for non-school age children).

Conclusions:

Caregivers provided valuable input that led to important additions and changes to the measures. The SCPD-CS and SCPD-CN are appropriate and fit-for-purpose observer-reported outcome measures of SCPC-related pain frequency and severity, and impacts on health-related quality of life.

Keywords:

Caregivers Content validity Daily diary Qualitative Sickle cell disease

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