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

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...

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Autores principales:	Michelle K. White, April M. Foster, Miranda Bailey, Denise D’Alessio, Avery Rizio, Patricia Stebbins, Danielle St. Pierre, Cory Saucier
Formato:	article
Lenguaje:	EN
Publicado:	BMC 2021
Materias:	Content validity Daily diary Sickle cell disease Caregivers Qualitative Computer applications to medicine. Medical informatics R858-859.7
Acceso en línea:	https://doaj.org/article/0e00ebb0b2e243abb3307dd864105617
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spelling	oai:doaj.org-article:0e00ebb0b2e243abb3307dd8641056172021-11-21T12:28:07ZContent validation of observer-reported sickle cell pain diaries (SCPD-CS and SCPD-CN): results from interviews with caregivers10.1186/s12955-021-01888-51477-7525https://doaj.org/article/0e00ebb0b2e243abb3307dd8641056172021-11-01T00:00:00Zhttps://doi.org/10.1186/s12955-021-01888-5https://doaj.org/toc/1477-7525Abstract 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.Michelle K. WhiteApril M. FosterMiranda BaileyDenise D’AlessioAvery RizioPatricia StebbinsDanielle St. PierreCory SaucierBMCarticleContent validityDaily diarySickle cell diseaseCaregiversQualitativeComputer applications to medicine. Medical informaticsR858-859.7ENHealth and Quality of Life Outcomes, Vol 19, Iss 1, Pp 1-15 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Content validity Daily diary Sickle cell disease Caregivers Qualitative Computer applications to medicine. Medical informatics R858-859.7
spellingShingle	Content validity Daily diary Sickle cell disease Caregivers Qualitative Computer applications to medicine. Medical informatics R858-859.7 Michelle K. White April M. Foster Miranda Bailey Denise D’Alessio Avery Rizio Patricia Stebbins Danielle St. Pierre Cory Saucier Content validation of observer-reported sickle cell pain diaries (SCPD-CS and SCPD-CN): results from interviews with caregivers
description	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.
format	article
author	Michelle K. White April M. Foster Miranda Bailey Denise D’Alessio Avery Rizio Patricia Stebbins Danielle St. Pierre Cory Saucier
author_facet	Michelle K. White April M. Foster Miranda Bailey Denise D’Alessio Avery Rizio Patricia Stebbins Danielle St. Pierre Cory Saucier
author_sort	Michelle K. White
title	Content validation of observer-reported sickle cell pain diaries (SCPD-CS and SCPD-CN): results from interviews with caregivers
title_short	Content validation of observer-reported sickle cell pain diaries (SCPD-CS and SCPD-CN): results from interviews with caregivers
title_full	Content validation of observer-reported sickle cell pain diaries (SCPD-CS and SCPD-CN): results from interviews with caregivers
title_fullStr	Content validation of observer-reported sickle cell pain diaries (SCPD-CS and SCPD-CN): results from interviews with caregivers
title_full_unstemmed	Content validation of observer-reported sickle cell pain diaries (SCPD-CS and SCPD-CN): results from interviews with caregivers
title_sort	content validation of observer-reported sickle cell pain diaries (scpd-cs and scpd-cn): results from interviews with caregivers
publisher	BMC
publishDate	2021
url	https://doaj.org/article/0e00ebb0b2e243abb3307dd864105617
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Content validation of observer-reported sickle cell pain diaries (SCPD-CS and SCPD-CN): results from interviews with caregivers

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