Cerebral palsy pain instruments: Recommended tools for clinical research studies by the National Institute of Neurological Disorders and Stroke Cerebral Palsy Common Data Elements project

被引：5

作者：

Schiariti, Veronica ^{[1
]}

Shierk, Angela ^{[2
]}

Stashinko, Elaine E. ^{[3
,4
]}

Sukal-Moulton, Theresa ^{[5
]}

Feldman, Robin S. ^{[6
]}

Aman, Clara ^{[6
]}

Mendoza-Puccini, M. Carolina ^{[7
]}

Brandenburg, Joline E. ^{[8
,9
]}

机构：

[1] Univ Victoria, Div Med Sci, POB 1700 STN CSC, Victoria, BC V8W 2Y2, Canada

[2] Texas Womans Univ, Scottish Rite Children, Dallas, TX USA

[3] Johns Hopkins Sch Nursing, Baltimore, MD USA

[4] Sch Med, Baltimore, MD USA

[5] Northwestern Univ, Feinberg Sch Med, Dept Phys Therapy & Human Movement Sci, Chicago, IL USA

[6] Emmes Co, Rockville, MD USA

[7] NINDS, Div Clin Res, NIH, Bethesda, MD USA

[8] Mayo Clin, Dept Phys Med & Rehabil, Rochester, MN USA

[9] Mayo Clin, Dept Pediat & Adolescent Med, Rochester, MN USA

来源：

DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY | 2024年 / 66卷 / 05期

关键词：

CHRONIC MUSCULOSKELETAL PAIN; PRELIMINARY PSYCHOMETRIC EVALUATION; ACTIVITY LIMITATIONS INTERVIEW; NUMERICAL RATING-SCALE; SELF-REPORT; INTERNATIONAL-CLASSIFICATION; PRELIMINARY VALIDATION; COGNITIVE IMPAIRMENTS; INTERFERENCE INDEX; QUESTIONNAIRE BAPQ;

D O I：

10.1111/dmcn.15743

中图分类号：

R74 [神经病学与精神病学];

学科分类号：

摘要：

AimThis study describes the process of updating the cerebral palsy (CP) common data elements (CDEs), specifically identifying tools that capture the impact of chronic pain on children's functioning.MethodThrough a partnership between the American Academy for Cerebral Palsy and Developmental Medicine and the National Institute of Neurological Disorders and Stroke (NINDS), the CP CDEs were developed as data standards for clinical research in neuroscience. Chronic pain was underrepresented in the NINDS CP CDEs version 1.0. A multi-step methodology was applied by an interdisciplinary professional team. Following an adapted CP chronic pain tools' rating system, and a review of psychometric properties, clinical utility, and compliance with inclusion/exclusion criteria, a set of recommended pain tools was posted online for external public comment in May 2022.ResultsFifteen chronic pain tools met inclusion criteria, representing constructs across all components of the International Classification of Functioning, Disability and Health.InterpretationThis paper describes the first condition-specific pain CDEs for a pediatric population. The proposed set of chronic pain tools complement and enhance the applicability of the existing pediatric CP CDEs. The novel CP CDE pain tools harmonize the assessment of chronic pain, addressing not only intensity of chronic pain, but also the functional impact of experiencing it in everyday activities. image

引用

页码：610 / 622

页数：13