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Open access publications by faculty, staff, postdocs, and graduate students from the Center for Health Assessment Research and Translation.
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Item Exploring symptom clusters in mild cognitive impairment and dementia with the NIH Toolbox(Journal of the International Neuropsychological Society, 2024-02-16) Tyner, Callie E.; Boulton, Aaron J.; Slotkin, Jerry; Cohen, Matthew L.; Weintraub, Sandra; Gershon, Richard C.; Tulsky, David S.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.Item Identifying Health-Related Quality of Life Domains After Upper Extremity Transplantation(Archives of Physical Medicine and Rehabilitation, 2023-06-01) Tulsky, David S.; Kisala, Pamela A.; Tyner, Callie E.; Slotkin, Jerry; Kaufman, Christina; Dearth, Christopher L.; Horan, Annamarie D.; Talbot, Simon G.; Shores, Jaimie T.; Azari, Kodi; Cetrulo, Curtis Jr.; Brandacher, Gerald; Cooney, Carisa M.; Victorson, David; Dooley, Mary; Levin, L. Scott; Tintle, Scott M.Objective 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. Design 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. Setting 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. Participants 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. Interventions Not applicable. Main Outcome Measures Not applicable. Results 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. Conclusions 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.Item Establishing severity levels for patient-reported measures of functional communication, participation, and perceived cognitive function for adults with acquired cognitive and language disorders(Quality of Life Research, 2022-12-27) Cohen, Matthew L.; Harnish, Stacy M.; Lanzi, Alyssa M.; Brello, Jennifer; Hula, William D.; Victorson, David; Nandakumar, Ratna; Kisala, Pamela A.; Tulsky, David S.Purpose: To empirically assign severity levels (e.g., mild, moderate) to four relatively new patient-reported outcome measures (PROMs) for adults with acquired cognitive/language disorders. They include the Communicative Participation Item Bank, the Aphasia Communication Outcome Measure, and Neuro-QoL’s item banks of Cognitive Function (v2.0) and Ability to Participate in Social Roles and Activities (v1.0). Method: We conducted 17 focus groups that comprised 22 adults with an acquired cognitive/language disorder from stroke, Parkinson’s disease, or traumatic brain injury; 30 care partners of an adult with an acquired cognitive/language disorder; and 42 speech-language pathologists who had experience assessing/treating individuals with those and other cognitive/language disorders. In a small, moderated focus-group format, participants completed “PROM-bookmarking” procedures: They discussed hypothetical vignettes based on PROM item responses about people with cognitive/language disorders and had to reach consensus regarding whether their symptoms/function should be categorized as within normal limits or mild, moderate, or severe challenges. Results: There was generally good agreement among the stakeholder groups about how to classify vignettes, particularly when they reflected very high or low functioning. People with aphasia described a larger range of functional communication challenges as “mild” compared to other stakeholder types. Based on a consensus across groups, we present severity levels for specific score ranges for each PROM. Conclusion: Standardized, stakeholder-informed severity levels that aid interpretation of PROM scores can help clinicians and researchers derive better clinical meaning from those scores, for example, by identifying important clinical windows of opportunity and assessing when symptoms have returned to a “normal” range.