Validation of the Adolescent Pediatric Pain Tool for the Multidimensional Measurement of Pain in Children and Adolescents Diagnosed with Osteogenesis Imperfecta

Boitor, Mădălina; Gélinas, Céline; Rauch, Frank; Jacob, Eufemia; LeMay, Sylvie; Carrier, Jaimie Isabel; Bilodeau, Claudette; Tsimicalis, Argerie

doi:10.1080/24740527.2019.1626705

Cited by 3 publications

(1 citation statement)

References 37 publications

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“…Ideally, pain assessment should be multidimensional and incorporate patient‐reported outcome measures (PROMs; Boitor et al, 2019; McGrath et al, 2008). Recently, two studies have focused on the validity of measuring the physical function and QoL using Pediatric Outcome Data Collection Instrument (PODCI) and Short Form‐12 items version 2 (SF‐12v2) in children and adults with OI (Murali et al, 2020, 2021).…”

Section: Introductionmentioning

confidence: 99%

A multicenter study to evaluate pain characteristics in osteogenesis imperfecta

Celin

Kruger

Caudill

et al. 2022

American J of Med Genetics Pt A

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The objective was to describe pain characteristics and treatments used in individuals with varying severity of osteogenesis imperfecta (OI) and investigate pain‐associated variables. This work was derived from a multicenter, longitudinal, observational, natural history study of OI conducted at 12 clinical sites of the NIH Rare Diseases Clinical Research Network's Brittle Bone Disorders Consortium. Children and adults with a clinical, biochemical, or molecular diagnosis of OI were enrolled in the study. We did a cross‐sectional analysis of chronic pain prevalence, characteristics, and treatments used for pain relief and longitudinal analysis to find the predictors of chronic pain. We included 861 individuals with OI, in 41.8% chronic pain was present, with similar frequency across OI types. Back pain was the most frequent location. Nonsteroidal anti‐inflammatory drugs followed by bisphosphonates were the most common treatment used. Participants with chronic pain missed more days from school or work/year and performed worse in all mobility metrics than participants without chronic pain. The variables more significantly associated with chronic pain were age, sex, positive history of rodding surgery, scoliosis, other medical problems, assistive devices, lower standardized height, and higher body mass index. The predictors of chronic pain for all OI types were age, use of a wheelchair, and the number of fractures/year. Chronic pain is prevalent in OI across all OI types, affects mobility, and interferes with participation. Multiple covariates were associated with chronic pain.

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Section: Introductionmentioning

confidence: 99%

A multicenter study to evaluate pain characteristics in osteogenesis imperfecta

Celin

Kruger

Caudill

et al. 2022

American J of Med Genetics Pt A

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The Design, Development, and Usability Testing of an eHealth Program for Youths With Osteogenesis Imperfecta: Protocol for a 2-Phase User-Centered Mixed Methods Study

Tsimicalis¹,

Stinson²,

Thorstad³

et al. 2023

JMIR Res Protoc

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Background Innovative approaches are needed to address the self-management needs of youths with osteogenesis imperfecta (OI) transitioning into adult-oriented health care systems. Using a sequentially phased research approach, the goal is to design, develop, and test the usability of an innovative eHealth program called “Teens Taking Charge: Managing OI Online,” hereafter named “Teens OI.” This program seeks to optimize self-management, facilitate a successful transition to adult care, and address a critical gap in the quality of care for youths with OI. Objective The study objectives are to (1) design and develop an English and French version of the Teens OI and (2) test the usability of the Teens OI in terms of efficiency, effectiveness, and satisfaction from the perspectives of youths with OI and their parents. Methods A user-centered design is presently in progress to design and develop Teens OI. A “Website Design and Development Council” (ie, Council) has been convened, with 20 youths and parent dyads recruited and global experts surveyed at an international meeting. With unanimous support from the Council, usability testing of the Teens OI will ensue in 4 iterative cycles with 32 youth-parent dyads. All sociodemographic and usability metrics will be descriptively analyzed. All recorded interview and focus group data are analyzed using content analysis techniques involving an iterative process of data reduction, data display, conclusion drawing, and verification. Results As of December 2022, an 8-person, interdisciplinary Teens OI council, comprising 4 health care professionals, 3 youths and young adults with OI, and 1 parent, has been convened to oversee the design and development of Teens OI. Two cycles of interviews have been conducted with 10 youths with OI with or without their parents (n=6) from December 2021 to September 2022. Data analysis has been in progress since April 2022. Aim 2 is ethically approved and will commence following the completion of content development, expected by late July 2023. Preliminary analysis indicates that the following topics need to be prioritized for the youths: mental health, pain, accessibility, medical care, education, community, and parental care. Conclusions The proposed study will design and develop a self-management and transitional care program for youths with OI in partnership with patients, caregivers, and health care professionals. This study leverages youths’ openness to adopt eHealth technologies to meet their needs and has the potential to actively engage them to autonomously manage their lifelong conditions, and facilitate a successful transition to adult health care. Finally, the proposed study will also address a critical gap in the quality of care and the growing concern that the OI population transitioning from pediatric to adult care is at risk of various adverse events associated with the transition. International Registered Report Identifier (IRRID) DERR1-10.2196/47524

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The Design, Development, and Usability Testing of an eHealth Program for Youths With Osteogenesis Imperfecta: Protocol for a 2-Phase User-Centered Mixed Methods Study (Preprint)

Tsimicalis¹,

Stinson²,

Thorstad³

et al. 2023

Preprint

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BACKGROUND Innovative approaches are needed to address the self-management needs of youth with osteogenesis imperfecta (OI) transitioning into adult-oriented health care systems. Using a sequentially phased research approach, the goal is to design, develop, and test the usability of an innovative e-health program called “Teens Taking Charge”: Managing OI Online”, hereafter named “Teens OI”. This program seeks to optimize self-management, facilitate successful transition to adult care, and address a critical gap in the quality of care for youth with OI. OBJECTIVE The study objectives are to: (1) design and develop an English and French version of the Teens OI, and (2) to test the usability of Teens OI in terms of: (a) efficiency, (b) effectiveness, and (c) satisfaction, from the perspectives of youth with OI and their parents. METHODS A user-centered design is presently in progress to design and development Teens OI. A “Website Design and Development Council” (i.e. Council) has been convened, with 20 youth/parent dyads recruited and global experts surveyed at an international meeting. With unanimous support from the Council, usability testing of Teens OI will ensue in four iterative cycles with 32 youth/parent dyads. All sociodemographic and usability metrics will be descriptively analyzed. All recorded interview and focus group data are being analyzed using content analysis techniques involving an iterative process of data reduction, data display, conclusion drawing, and verification. RESULTS An eight-person, interdisciplinary, Teens OI council, comprised of four healthcare professionals, three youth and young adults with OI, and one parent, has been convened to oversee the design and development of Teens OI. Two cycles of interviews have been conducted with ten youth with OI with or without their parent (n=6). Data analysis is in-progress. Aim 2 is ethically approved and will commence following completion of content development. Preliminary analysis indicates that the following topics need to be prioritized for the youth: mental health, pain, accessibility, medical care, education, community, and parental care. CONCLUSIONS The proposed study will design and develop a self-management and transitional care program for youth with OI in partnership with patients, caregivers, and healthcare professionals. This study leverages youth’s openness to adopt e-health technologies to meet their needs and has the potential to actively engage them to autonomously manage their life-long condition, and facilitate a successful transition to adult health care. Finally, the proposed study will also address a critical gap in the quality of care and the growing concern that the OI population transitioned from pediatric to adult care is at risk of various adverse events associated with transition.

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Validation of the Adolescent Pediatric Pain Tool for the Multidimensional Measurement of Pain in Children and Adolescents Diagnosed with Osteogenesis Imperfecta

Cited by 3 publications

References 37 publications

A multicenter study to evaluate pain characteristics in osteogenesis imperfecta

A multicenter study to evaluate pain characteristics in osteogenesis imperfecta

The Design, Development, and Usability Testing of an eHealth Program for Youths With Osteogenesis Imperfecta: Protocol for a 2-Phase User-Centered Mixed Methods Study

The Design, Development, and Usability Testing of an eHealth Program for Youths With Osteogenesis Imperfecta: Protocol for a 2-Phase User-Centered Mixed Methods Study (Preprint)

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