Understanding the benefits and challenges of outpatient virtual care during the COVID-19 pandemic in a Canadian pediatric rehabilitation hospital.

PURPOSE: The evolving virtual health care experience highlights the potential of technology to serve as a way to enhance care. Having virtual options for assessment, consultation and intervention were essential during the coronavirus (COVID-19) pandemic, especially for children with disabilities and their families. The purpose of our study was to describe the benefits and challenges of outpatient virtual care during the pandemic within pediatric rehabilitation. METHODS: This qualitative study, part of a larger mixed methods project, involved in-depth interviews with 17 participants (10 parents, 2 youth, 5 clinicians) from a Canadian pediatric rehabilitation hospital. We analyzed the data using a thematic approach. RESULTS: Our findings demonstrated three main themes: (1) benefits of virtual care (e.g., continuity of care, convenience, stress reduction and flexibility, and comfort within the home environment and enhanced rapport); (2) challenges related to virtual care (e.g., technical difficulties and lack of technology, environmental distractions and constraints, communication difficulty, and health impacts); and (3) advice for the future of virtual care (i.e., offering choice to families, enhanced communication and addressing health equity issues). CONCLUSIONS: Clinicians and hospital leaders should consider addressing the modifiable barriers in accessing and delivering virtual care to optimize its effectiveness.

Families are invested in access to virtual care appointments and can benefit from clear communication about choices regarding appointment options and supports in how to access and use technology for equitable access to care.Hospitals should aim to provide clinicians with an appropriate workspace (i.e., private, quiet with adequate room to demonstrate what they need to do), equipment and technology to have virtual care appointments.Current understanding of virtual care delivery suggests a tailored approach, with some types of appointments, such as follow-ups or check-ins, more suited to this modality than other more hands-on therapy.

The switch access measure: development and evaluation of the reliability and clinical utility of a switching assessment for children with severe and multiple disabilities.

PURPOSE: Children with severe, multiple disabilities often need to use switches to control their assistive technology. We developed the Switch Access Measure (SAM) to address the lack of validated functional activity-based measures to evaluate children's success using their prescribed switch(es). This goal-based performance measure evaluates switching ability on 16 skills items (6 motor, 2 visual, and 8 process). This study investigated SAM's reliability and confidence in scoring. METHODS: Two occupational therapists with switch access intervention experience were trained as SAM study assessors. They independently scored SAM (inter-rater reliability) while viewing 20 study assessment videos where each child undertook at least one goal-based switching activity with their technology, and rated confidence in scoring for each SAM item. The SAM's two developers independently scored these videos as an inter-rater reliability benchmark. Each study assessor re-scored a subset of 10 videos 2-3 weeks later (intra-rater reliability). RESULTS: SAM Total score inter-rater reliability was excellent for the two study assessors (ICC =0.82) and the two SAM developers (ICC = 0.95). Inter-rater reliability was lowest (moderate) for Motor Subsection for the assessors, but still excellent for the developers. Intra-reliability for both groups of raters was excellent for Total and Subsection scores. Assessors' confidence in scoring was high (mean of 84.7% and 86.8% respectively) across items/participants. CONCLUSIONS: SAM is sufficiently reliable for clinical use, permitting clinicians, after SAM training and certification, to include it in their assessments and in development of switch access intervention plans for children with severe, multiple disabilities.IMPLICATIONS FOR REHABILITATIONFor practitioners new to the field of switching technology, the SAM will provide a comprehensive understanding of all the components of successful switch use that need consideration when working with those needing switch access technologies.For all practitioners in this area, the SAM offers a consistent language to support clear communication among professionals, families, clients and their support networks. The SAM also gives quantifiable and reliable data to back clinical decision making, particularly important to support the case for funding of these technologies.Use of the SAM will prompt discussions with clients, families and carers and lead to better understanding of strengths and challenges, thus enhancing collaborative working relationships in the pursuit of achieving the best possible outcomes for those needing to use switch access technologies.

Multi-domain assessment of sports-related and military concussion recovery: A scoping review.

OBJECTIVE: This review explores the literature on multi-domain assessments used in concussion recovery, to inform evidence-based and ecologically valid return-to-play. It asks: What simultaneous, dynamic multi-domain paradigms are used to assess recovery of youth and adults following concussion? METHODS: Five databases were searched (CINAHL, EMBASE, MEDLINE, PsycInfo, SPORTDiscus) until September 30, 2021. Records were limited to those published in peer-reviewed journals, in English, between 2002 and 2021. Included studies were required to describe the assessment of concussion recovery using dynamic paradigms (i.e., requiring sport-like coordination) spanning multiple domains (i.e., physical, cognitive, socio-emotional functioning) simultaneously. RESULTS: 7098 unique articles were identified. 64 were included for analysis, describing 36 unique assessments of 1938 concussed participants. These assessments were deconstructed into their constituent tasks: 13 physical, 17 cognitive, and one socio-emotional. Combinations of these "building blocks" formed the multi-domain assessments. Forty-six studies implemented level walking with a concurrent cognitive task. The most frequently implemented cognitive tasks were 'Q&A' paradigms requiring participants to answer questions aloud during a physical task. CONCLUSIONS: A preference emerged for dual-task assessments, specifically combinations of level walking and Q&A tasks. Future research should balance ecological validity and clinical feasibility in multi-domain assessments, and work to validate these assessments for practice.

Measuring advanced motor skills in children with cerebral palsy: development of normative data and percentile curves for the Challenge-20 assessment.

The Challenge-20 is an assessment of advanced motor skills of children with cerebral palsy. The purpose of this study was to develop age-related norms and percentile curves for the Challenge-20 with typically developing children ( n = 150, 7 through 11 years), and compare Challenge-20 scores of independently ambulatory children with CP, Gross Motor Function Classification System level I ( n = 135) and II ( n = 56) to these age norms. Younger TD children (7 years) scored lowest, and older children (11 years) scored highest on the Challenge-20 , showing similar developmental trajectories. Challenge-20 scores of 15% of children in GMFCS level I were situated above the lower 2.5th percentile curve of the typically developing children's Challenge-20 growth curve, that is, overlapping into the typically developing child zone. The Challenge-20 is sensitive to the progression of advanced gross motor skills in typically developing children. Children with cerebral palsy, GMFCS I follow similar, albeit lower, Challenge score trajectory to that of typically developing children, and in some cases come close to lower level abilities of typically developing children. The reference values with typically developing children extend the Challenge-20 's utility when assessing advanced gross motor skill of independently ambulatory children with cerebral palsy for physiotherapy intervention and physical activity planning and open the door to re-thinking more about advanced gross motor interventions for children with cerebral palsy in GMFCS levels I and II given their potential to progress along the developmental trajectory.

The Concussion Challenge Assessment: Development and reliability of a novel gross motor assessment tool for paediatric concussion.

Aims: The aim of this study was to develop a gross motor performance clinical assessment tool, the Concussion Challenge Assessment (CCA), for paediatric concussion populations. Methods: An expert panel evaluated tasks from the Acquired Brain Injury Challenge Assessment to determine relevant tasks for a paediatric concussion population. These tasks were administered to a convenience sample of 854 healthy youth. An analysis of the response options for each task, considering task difficulty, was performed. The test-retest reliability of each task was considered to finalise the tool. Results: The Acquired Brain Injury Challenge Assessment was reduced to six tasks (three coordination, two speed and agility, and one strength) to create the CCA. Population-specific 4-point response options were generated, which, upon examination of task difficulty, were revised as 5-point response sets to better capture performance differences. The test-retest reliability results led to acceptance of all six: three performance tasks and three exertion tasks. Conclusion: This development of the CCA is an important step in creating a gross motor performance assessment tool that can assist in the determination of when youth are able to safely return to activity following a concussion.

Development of the gait outcomes assessment list for lower-limb differences (GOAL-LD) questionnaire: a child and parent reported outcome measure.

BACKGROUND: To develop a priority-based patient/parent reported outcome measure for children with lower-limb differences (LD) by adapting the Gait Outcomes Assessment List (GOAL) questionnaire. METHODS: Guided by a conceptual framework of patient priorities, the GOAL questionnaire was iteratively modified and its sensibility evaluated by field-testing it on children with LD, and their parents. Cognitive interviews were conducted with a subgroup of these children, and an e-survey administered to a multidisciplinary group of health care professionals with expertise in paediatric LD. Findings were integrated to create the final version of the GOAL-LD. RESULTS: Twenty-five children (9-18 years), 20 parents, and 31 healthcare professionals evaluated the content and sensibility of the GOAL, with an emphasis on the relevance and importance of the items to patients' health related quality of life (HRQL). This resulted in the retention of 26 of the original 50 items, elimination of 12, modification of 12, and addition of seven new items. The new 45-item GOAL-LD questionnaire was shown to be sensible, and its content deemed important. CONCLUSIONS: The GOAL-LD questionnaire has a high level of face and content validity, and sensibility. It comprehensively captures the HRQL goals and outcomes that matter to children with LD and their parents. Following further psychometric evaluation, the GOAL-LD may serve as a much needed patient and parent reported outcome measure for this population.

Development of the family needs questionnaire - pediatric version [FNQ-P] - phase I.

OBJECTIVE: To adapt the well-validated 37-item adult Family Needs Questionnaire to make it suitable for families of children and youth with acquired brain injury (ABI). METHODS: Measurement construction employed a modified Delphi technique to identify the most relevant content items for the pediatric Family Needs Questionnaire (FNQ-P). The Delphi process involved a panel of 11 ABI-team clinicians and seven family caregivers of children/youth with an ABI and four rounds of anonymous voting on each item's importance. Qualitative responses related to each item's review were incorporated into item content and wording decisions. Cognitive interviews were conducted with three parents after the Delphi to evaluate face and content validity. RESULTS: The outcome of the final Delphi round was a set of 40 items within the original FNQ's original six categories: Health Information (n = 10), Emotional Support (n = 6), Instrumental Support (n = 4), Professional Support (n = 6), Community Support (n = 6), and Involvement with Care (n = 8). Cognitive interviews resulted in changes to formatting, rating scale, and item wording, and culminated in overall consensus about the FNQ-P's face/content validity. CONCLUSIONS: Use of the Delphi process with family and clinical partners resulted in content-endorsed pediatric FNQ that is ready for validation work prior to transfer to clinical practice.

Clinical responsiveness of self-report functional assessment measures for children with juvenile idiopathic arthritis undergoing intraarticular corticosteroid injections.

OBJECTIVE: The Childhood Health Assessment Questionnaire (CHAQ), Juvenile Arthritis Functional Assessment Report (JAFAR), and Juvenile Arthritis Functional Status Index (JASI) are widely used functional measures for juvenile idiopathic arthritis (JIA) that differ in content, format, and completion time. We compared the responsiveness and child-parent agreement of the JAFAR, CHAQ, and JASI in a prospective, multicenter study. METHODS: Children and adolescents from 5 rheumatology centers were enrolled. Subjects were about to undergo therapy (intraarticular corticosteroid injections [IAS] and methotrexate or hip surgery (MTX/hip]) expected to produce a functional improvement. All subjects were studied before the intervention and at 6 weeks and 6 months posttreatment. At each study visit, the 3 measures were administered in randomized, balanced order to both parents and children. RESULTS: A total of 92 subjects (mean age 12.8 years) were enrolled in the study, 74 of which were in the IAS group. The responsiveness of all 3 measures was moderate to strong. The standardized response mean at 6 weeks for the IAS group on the JAFAR, CHAQ, and JASI was 0.41 (95% confidence interval [95% CI] 0.18, 0.64), 0.70 (95% CI 0.47, 0.93), and 0.36 (95% CI 0.13, 0.59), respectively. The CHAQ was somewhat more responsive to change at 6 weeks (IAS group: relative efficiency 0.34 [JAFAR], 0.27 [JASI]), but less responsive at 6 months (MTX/hip group: relative efficiency 5.1 [JAFAR], 3.9 [JASI]). All 3 questionnaires showed acceptable parent-child agreement, and overall, there were few differences between the 3 questionnaires. CONCLUSION: The functional outcome measures currently used for JIA are all adequately responsive for use in trials or in the clinic setting. The choice of which measure to use should therefore be based on the time available for completion, the intended clinical/research use, and the depth of content required.