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Background: Patient-reported outcome (PRO) measures produce scores that do not always have obvious clinical meaning. The PRO-bookmarking procedure is a new and promising way to make PRO measures more meaningful and interpretable. However, the materials and procedures of the task may benefit from adaptations to be more accessible to individuals with cognitive and language disorders. Aims: This study aims to provide an overview of the iterative refinement process used to modify the materials and procedures of the PRO-bookmarking task so that they are more accessible to adults with acquired cognitive and language impairments. Method and Procedures: Our team of health psychologists, neuropsychologists, and speech-language pathologists (SLPs) conducted two focus groups with SLPs and care partners of people with aphasia using the same PRO-bookmarking materials and procedures as previous reports. These PRO-bookmarking materials and procedures were then refined iteratively based on discussion with those who participated in focus groups and among the research team, and three more times in the course of 16 additional focus groups of different stakeholders: people with Parkinson's disease, aphasia, or traumatic brain injury; care partners of people with those conditions; and SLPs who have experience with those, and other adult-acquired conditions. Outcomes and Results: The PRO-bookmarking materials and procedures underwent four iterations to make them clearer, simpler, and more accessible. For example, the materials included more structured text and graphic supports where appropriate and the procedures were clustered into smaller discrete tasks and displayed graphically when possible and appropriate. Conclusions: PRO-bookmarking materials and procedures were made simpler and more structured to increase their accessibility to adults with cognitive and language impairments. In fact, these adaptations made the tasks simpler and clearer for all types of stakeholders.

Purpose: The purpose of this study was to evaluate the internal consistency and construct validity of the Traumatic Brain Injury Quality of Life Communication Item Bank (TBI-QOL COM) short form as a parent-proxy report measure. The TBI-QOL COM is a patient-reported outcome measure of functional communication originally developed as a self-report measure for adults with traumatic brain injury (TBI), but it may also be valid as a parent-proxy report measure for children who have sustained TBI. Method: One hundred twenty-nine parent-proxy raters completed the TBI-QOL COM short form 6 months postinjury as a secondary aim of a multisite study of pediatric TBI outcomes. The respondents' children with TBI were between 8 and 18 years old (M[subscript age] = 13.2 years old) at the time of injury, and the proportion of TBI severity mirrored national trends (73% complicated-mild; 27% moderate or severe). Results: The parent-proxy report version of the TBI-QOL COM displayed strong internal consistency (ordinal [alpha] = 0.93). It also displayed evidence of known-groups validity by virtue of more severe injuries associated with more abnormal scores. The instrument also showed evidence of convergent and discriminant validity by displaying a pattern of correlations with other constructs according to their conceptual relatedness to functional communication. Conclusions: This preliminary psychometric investigation of the TBI-QOL COM supports the further development of a parent report version of the instrument. Future development of the TBI-QOL COM with this population may include expanding the content of the item bank and developing calibrations specifically for parent-proxy raters.

Objective: Symptom clustering research provides a unique opportunity for understanding complex medical conditions. The objective of this study was to apply a variable-centered analytic approach to understand how symptoms may cluster together, within and across domains of functioning in mild cognitive impairment (MCI) and dementia, to better understand these conditions and potential etiological, prevention, and intervention considerations. Method: Cognitive, motor, sensory, emotional, and social measures from the NIH Toolbox were analyzed using exploratory factor analysis (EFA) from a dataset of 165 individuals with a research diagnosis of either amnestic MCI or dementia of the Alzheimer's type. Results: The six-factor EFA solution described here primarily replicated the intended structure of the NIH Toolbox with a few deviations, notably sensory and motor scores loading onto factors with measures of cognition, emotional, and social health. These findings suggest the presence of cross-domain symptom clusters in these populations. In particular, negative affect, stress, loneliness, and pain formed one unique symptom cluster that bridged the NIH Toolbox domains of physical, social, and emotional health. Olfaction and dexterity formed a second unique cluster with measures of executive functioning, working memory, episodic memory, and processing speed. A third novel cluster was detected for mobility, strength, and vision, which was considered to reflect a physical functioning factor. Somewhat unexpectedly, the hearing test included did not load strongly onto any factor. Conclusion: This research presents a preliminary effort to detect symptom clusters in amnestic MCI and dementia using an existing dataset of outcome measures from the NIH Toolbox. [ABSTRACT FROM AUTHOR]

To identify the most important health-related quality of life (HRQOL) domains and patient-reported outcomes after upper extremity transplantation (UET) in individuals with upper extremity amputation. Verbatim audio-recordings of individual interviews and focus groups were analyzed using qualitative, grounded theory-based methods to identify important domains of HRQOL and provide guidance for outcomes measurement after UET. Individual interviews were conducted by phone. Focus groups were conducted at 5 upper extremity vascularized composite allotransplantation (VCA) centers in the US and at an international conference of VCA experts. Individual phone interviews were conducted with 5 individuals with lived experience of UET. Thirteen focus groups were conducted with a total of 59 clinical professionals involved in UET. Not applicable. Not applicable. Twenty-eight key HRQOL domains were identified, including physical functioning and medical complications, positive and negative emotional functioning, and social participation, relations, and independence. We identified key constructs for use in evaluation of the potentially substantial physical, medical, social, and emotional effects of UET. This study provides an overview of the most important issues affecting HRQOL after UET, including several topics that are unique to individuals with UET. This information will be used to establish systematic, comprehensive, and longitudinal measurement of post-UET HRQOL outcomes. [ABSTRACT FROM AUTHOR]

A series of recent reports have shed light on the pervasive nature of motor impairments in children with ASD (Bhat, 2020, 2021, Bhat et al., 2022), underscoring the importance of providing ASD clinicians efficient and accurate tools for motor screening. The Developmental Coordination Disorder‐Questionnaire (DCD‐Q) is a widely used motor screening tool, yet scant evidence exists regarding its psychometric properties in children with ASD. In a recent Exploratory Factor Analysis (EFA) of the 15‐item DCD‐Q in a large sample of children with ASD (SPARK study), we found a 5‐factor latent structure that identified unique motor impairments in a large sample of children with ASD (Bhat et al., 2022). In the current study, we extend this work by cross‐replicating the EFA findings of unique ASD‐related motor issues using Confirmatory Factor Analysis (CFA) in a new, more recent wave of children with ASD from the SPARK study (N = 9721). The fits and interpretability of 11 hypothesis‐driven CFA models, including 8 correlated‐factors, 1 second‐order, and 2 bifactor models were compared. Our findings supported the previous 5‐factor model with 2 gross motor subdomains, 1 fine motor domain (similar to the original DCD‐Q) and 2 general coordination subdomains. This model demonstrated acceptable fit in the new sample as well as superior fit compared to several other parsimonious correlated‐factors models. However, the second‐order and bifactor models fit slightly better and supported the presence of a general motor skills factor, although 38% of the common variance in the DCD‐Q items remained attributable to the 5 subdomains. Using one of the bifactor models, measurement invariance was also supported for DCD‐Q across sex, race, and co‐occurring conditions of language disorder and intellectual disability. Only partial invariance was supported when testing DCD‐Q scores across different age groups. These findings reveal a more complex dimensional picture of the DCD‐Q in children with ASD. Results suggest that the DCD‐Q can be used in two ways, total scores adequately assess general motor skills for brief screening and subdomain scores offer unique information on the multidimensional motor problems of children with ASD. If subdomain data are of interest, our findings call into question the practice of relying on 3 original subscales of the DCD‐Q when screening for ASD‐related motor difficulties, whereas 4 out of 5 subscale scores may better highlight domain‐specific motor problems. Future studies should continue to further validate DCD‐Q's ability to screen for multidimensional motor problems. Lay Summary: In our past work, unique motor impairments were identified in school‐age children with ASD using exploratory factor analysis of the Developmental Coordination Disorder Questionnaire (DCD‐Q). In this paper, we cross‐replicate these findings in a new wave of children with ASD from the SPARK study using a confirmatory factor analysis approach. Children with ASD have unique multidimensional, gross and fine motor difficulties including visuomotor, multilimb coordination/planning, fine motor, and general motor competence issues. While subscale scores are specific in highlighting the different motor needs of a child, total DCD‐Q scores should be a sensitive score of motor risk. Therefore, use of the total DCD‐Q score may be sufficient for quick screening of motor problems in children with ASD in school and clinical settings, whereas 4 out of 5 subdomain scores of the DCD‐Q may better highlight domain‐specific motor problems. Future studies should continue to better understand how to best measure motor difficulties in children with ASD. [ABSTRACT FROM AUTHOR]

To provide reliability and validity data to support the clinical utility of Economic Quality of Life Measure (Econ-QOL) scores in caregivers of civilians and service members/veterans with traumatic brain injury (TBI). Cross-sectional survey study. Three academic medical centers and a Veterans Affairs treatment facility. 376 caregivers of civilians (n=213) and service members/veterans (n=163) with TBI (N=376). N/A. Econ-QOL and several patient-reported outcome measures (Traumatic Brain Injury Caregiver Quality of Life Caregiver-Specific Anxiety and Caregiver Strain, Patient-Reported Outcomes Measurement Information System sleep-related impairment, Neurological Quality of Life Measurement System positive affect and well-being) and measures of financial status (self-reported income). Internal consistency reliability of the Econ-QOL Short Form scores were excellent (all Cronbach's alphas ≥.92). There were no floor or ceiling effects for scores. There was evidence of convergent and discriminant validity, with the Econ-QOL scores having the strongest relationships with self-reported income (convergent validity evidence) and weak relationships with the other measures (discriminant validity evidence). Individuals with scores that were "below or possibly below" the poverty line (according to 2016 federal government poverty level thresholds) reported worse economic quality of life relative to those individuals who were definitely above the poverty line, supporting known-groups validity. This article establishes the clinical utility of scores on the Econ-QOL Short Form in caregivers of persons with TBI and provides evidence that it is valid and appropriate to use such scores not only in a variety of different disability populations (eg, spinal cord injury, stroke) but also in caregivers. [ABSTRACT FROM AUTHOR]

Upper extremity transplantation offers the promise of restored function and regained quality of life (QOL) for individuals who have sustained hand or arm amputation. However, a major challenge for this procedure becoming an accessible treatment option for patients is the lack of standard measures to document benefits to QOL. Patient-reported outcomes (PRO) measures are well-suited for this kind of intervention, where the perspective of the patient is central to defining treatment success. To date, qualitative work with experts, clinicians, and patients has been used to identify the most important domains of QOL for PRO item development. Specifically, our group’s qualitative work has identified several domains of QOL that are unique to individuals who have received upper extremity transplants, which are distinct from topics covered by existing PRO measures. These include emotional and social aspects of upper extremity transplant, such as Expectations and Perceived Outcomes, Integration and Assimilation of Transplant, Fitting in, and PostSurgical Challenges and Complications. The broad topic of Satisfaction with Transplant was subdivided into three subtopics: Function, Sensation, and Aesthetics. Satisfaction with Sensation was also identified as a unique domain not evaluated by existing PRO measures. This report operationalizes these eight QOL domains by presenting scoping definitions. This manuscript describes the work that has been completed for domain characterization as an early step toward developing standardized PRO measures to evaluate these important outcomes specific to upper extremity transplantation [ABSTRACT FROM AUTHOR]