Pain coping tools for children and young adults with a neurodevelopmental disability: A systematic review of measurement properties.

AIM: To systematically identify and evaluate the measurement properties of patient-reported outcome measures (PROMs) and observer-reported outcome measures (parent proxy report) of pain coping tools that have been used with children and young adults (aged 0-24 years) with a neurodevelopmental disability. METHOD: A two-stage search using MEDLINE, Embase, CINAHL, Web of Science, and PsycInfo was conducted. Search 1 in August 2021 identified pain coping tools used in neurodevelopmental disability and search 2 in September 2021 located additional studies evaluating the measurement properties of these tools. Methodological quality was assessed using the COnsensus-based Standards for the Selection of Health Measurement INstruments (COSMIN) guidelines (PROSPERO protocol registration no. CRD42021273031). RESULTS: Sixteen studies identified seven pain coping tools, all PROMs and observer-reported outcome measures (parent proxy report) versions. The measurement properties of the seven tools were appraised in 44 studies. No tool had high-quality evidence for any measurement property or evidence for all nine measurement properties as outlined by COSMIN. Only one tool had content validity for individuals with neurodevelopmental disability: the Cerebral Palsy Quality of Life tool. INTERPRETATION: Pain coping assessment tools with self-report and parent proxy versions are available; however, measurement invariance has not been tested in young adults with a neurodevelopmental disability. This is an area for future research.

Chronic pain interference assessment tools for children and adults who are unable to self-report: A systematic review of psychometric properties.

AIM: To identify and evaluate psychometric properties of assessment tools for assessing pain interference in children, adolescents, and adults with chronic pain and the inability to self-report. METHOD: The protocol was registered with PROSPERO (CRD42022310102). A search was run in MEDLINE, Embase, and PsycInfo (29th March 2022) to identify articles reporting psychometric properties of pain interference assessment tools for children, adolescents, and adults with chronic pain and the inability to objectively self-report pain. Retrieved studies were reviewed by two authors (MGS, LCF) and study quality was assessed using COSMIN. RESULTS: Psychometric properties of 10 pain interference tools were assessed from 33 studies. The Paediatric Pain Profile (PPP) had low-quality evidence for content validity and internal consistency with children and adolescents who are unable to self-report. No tools for adults had evidence for content validity and internal consistency. No tool had evidence for all nine psychometric properties. INTERPRETATION: The PPP is recommended for pain interference assessment in children and adolescents with chronic pain and the inability to self-report. Few tools are available for adults. Three tools for children (Patient-Reported Outcome Measurement Information System Pediatric Proxy Pain Interference Scale; Bath Adolescent Pain Questionnaire for Parents; modified Brief Pain Inventory-Proxy [mBPI]) and three tools for adults (Doloplus-2; Patient-Reported Outcome Measurement Information System Pain Interference Scale-proxy; Brief Pain Inventory-proxy) are promising but require further investigation.

Measurement properties and feasibility of chronic pain assessment tools for use with children and young people with cerebral palsy.

PURPOSE: Chronic pain assessment tools exist for children, but may not be valid, reliable, and feasible for populations with functional, cognitive or communication limitations, for example, cerebral palsy (CP). This study aimed to (i) identify chronic pain assessment tools used with children and young people and rate their measurement properties; (ii) develop a CP specific feasibility rating tool to assess the feasibility of tools in CP; and (iii) categorise tools according to reporting method. MATERIALS AND METHODS: Assessment tools were identified by literature review. Their measurement properties were rated using the COnsensus based standards for the Selection of health Measurement INstruments. The CP specific Feasibility Rating Tool was developed and used to rate the tools. RESULTS: Fifty-seven chronic pain assessment tools were identified. Six have content validity for CP, four of these use proxy-report. Forty-two tools were considered feasible for people with CP; 24 self report and 18 observational/proxy-report. Only the Paediatric Pain Profile has content validity and feasibility for people with CP unable to self-report. CONCLUSIONS: There are few valid, reliable and feasible tools to assess chronic pain in CP. Further research is required to modify tools to enable people with cognitive limitations and/or complex communication to self-report pain.

Few of the existing chronic pain assessment tools are feasible or valid to use with all young people with cerebral palsy (CP).Modifications to self-report tools are needed to improve access for young people who have cognitive impairment or use alternative and augmentative communication.The pain assessment tool with the strongest feasibility and measurement properties for young people who cannot self-report is the Paediatric Pain Profile.Clinicians will need to consider a range of chronic pain assessment tools to assess the biopsychosocial domains important to young people with cerebral palsy.

Minimal clinically important difference of the gait assessment and intervention tool for adults with stroke.

BACKGROUND: The Gait Assessment and Intervention Tool (GAIT) provides a valid and reliable gait quality measure for adults with stroke, however a minimal clinically important difference (MCID) is yet to be determined. RESEARCH QUESTION: What is the GAIT MCID in community dwelling adults with a stroke diagnosis? METHODS: The GAIT scores for a consecutive series of 63 adults with stroke, referred for video gait assessment within an outpatient rehabilitation program, were retrospectively identified from a gait laboratory database. Patients were classified by Functional Ambulation Category (FAC) and had walking speed measured, which classified them into one of three walking speed-based ambulatory levels (I.e. household, limited community or community ambulator). Linear regression models were fitted to assess the association between GAIT score and FAC level and GAIT score and ambulatory level. MCIDs were determined based on estimates calculated in the two models RESULTS: The FAC of patients ranged from 3 to 5. GAIT score was negatively correlated with FAC level and ambulatory level (ρ = -0.73, p < 0.001 and ρ =-0.69, p < 0.001, respectively). Pairwise comparisons from the models showed absolute mean differences between estimated GAIT scores of 10.84 (95% confidence interval 7.59-14.09) for changes from FAC level 3-4 and 12.13 (8.90-15.36) for household to limited community ambulator, and 5.90 (3.44-8.37) for changes from FAC level 4-5 and 4.39 (2.01-6.76) for limited community to community ambulator. The proposed MCID for FAC level 3 or household ambulators is 11.48, and for FAC level 4 and 5 or limited community/community ambulators is 5.19. SIGNIFICANCE: The proposed MCIDs represent real changes in gait quality measured by the GAIT for adults with stroke who exhibit lower or higher functional mobility levels. The MCIDs will assist clinicians and researchers using the tool to determine if meaningful change in gait quality has taken place for adults with stroke undergoing rehabilitation.