Toward patient-centered outcomes for cognitive evaluations: the perspective of those affected by Parkinson’s disease

Benge, Jared F.; Heemsbergen, Teresa; Nelson, Ronald A; Konesheck, David O; Konesheck, Bonny; Aaron, C.S.

doi:10.1080/13854046.2017.1414884

Cited by 6 publications

(4 citation statements)

References 28 publications

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“…To date, little work has been done in the area of provider and patient preferences for clinical cognitive assessment and reporting. Some research has examined preferences in the general population (15,16) and in dementia screening (17) but not in the context of SLE; very preliminary work has been done in other specific chronic diseases, including Parkinson's disease (18) and chronic obstructive pulmonary disease (19). Before clinical testing can be implemented for SLE patients, it will be important to understand the day-to-day cognitive problems experienced by patients and their effect on chronic disease management and whether SLE patients and providers would want to learn more about patients' cognition in clinical settings.…”

Section: Introductionmentioning

confidence: 99%

Cognitive Problems and Their Clinical Assessment in Systemic Lupus Erythematosus: Contrasting Patient and Provider Views

Vandenberg

Drenkard

Goldstein

et al. 2022

Arthritis Care & Research

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Objective. Systemic lupus erythematosus (SLE) is a complex chronic disease associated with reduced cognitive functioning. Patients with SLE report cognitive symptoms, but cognitive assessment is not routine in SLE and little is known about day-to-day cognitive problems and their effect on disease management. As part of a pilot exploring the use of a cognitive functioning report prototype for shared decision-making in clinical encounters (the Approaches to Positive Patient-Centered Experiences of Aging in Lupus [APPEAL] Study), we investigated the relevance of cognitive assessments performed using the National Institutes of Health (NIH) Toolbox among patients with SLE.Methods. We conducted 4 focus groups, 2 with SLE patients (n = 18) and 2 with lupus providers (physicians and nurses; n = 9), addressing cognitive issues and interest in communicating about cognition. We compared how NIH Toolbox cognitive domains (episodic memory, working memory, processing speed, attention and inhibitory control, cognitive flexibility) matched with patient-and provider-identified cognitive problems and needs.Results. Patients identified all NIH domains with rich experiential examples; providers identified fewer domains and offered less detail. An unanticipated additional domain was prospective memory (i.e., problems with remembering future actions). Use of technologic aids (e.g., smart phone alerts) was mentioned by some patients, but not providers, and represent a potential opportunity for medical care. All participants expressed interest in discussing cognition in clinic. Conclusion. Cognitive assessment using the NIH Cognitive Toolbox is relevant to this population, with the possible addition of a prospective memory assessment. Cognitive problems and indications of communication gaps suggest the appropriateness of more clinical communication about cognition in the SLE population.

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Section: Introductionmentioning

confidence: 99%

Cognitive Problems and Their Clinical Assessment in Systemic Lupus Erythematosus: Contrasting Patient and Provider Views

Vandenberg

Drenkard

Goldstein

et al. 2022

Arthritis Care & Research

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“…There is very little information about the nature of the personal goals of clients and their family members when they participate in neuropsychological evaluations, and whether these goals are met. Although one study has provided information about the desired outcomes of cognitive assessment among clients and family members (Benge et al, 2018) and others have examined attainment of clinician-identified goals (Bennett-Levy et al, 1994; Lanca et al, 2019; Westervelt et al, 2007), none have looked at the attainment of participant-identified goals. In other words, we do not yet know whether clients and family members are getting what they want out of the neuropsychological evaluation.…”

Section: Purpose and Objectivesmentioning

confidence: 99%

Understanding the client and family experience of neuropsychological evaluation.

Vandermorris¹,

Cochrane²,

Troyer³

2021

Professional Psychology: Research and Practice

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Neuropsychological evaluation serves a number of health-related purposes, but little is known about how the evaluation process is experienced by clients and their family members. In this article, we describe a quality improvement initiative that utilized a mixed-methods approach to explore personal goal attainment and satisfaction by clients and family members engaging in the evaluation process. We retrospectively reviewed data collected over a 5-year period from a neuropsychological evaluation service at a tertiary geriatric care center. At the outset of the evaluation, 492 clients and family members identified goals to better understand the client's cognition and to obtain recommendations for managing cognitive changes; the large majority of these goals were rated as achieved by the end of the feedback session. At service completion, 657 clients and family members completed satisfaction questionnaires, and over 90% of respondents endorsed the highest level of satisfaction. Qualitative content analysis identified clinician behaviors, quality of care, and environmental factors as important aspects of the client and family experience. Findings were used to improve the delivery of client-centered, evidence-based care. The results of this initiative demonstrate the feasibility and utility of incorporating client and family goals and feedback into routine clinical practice. Practical suggestions and relevant tools are provided to assist the professional psychologist in implementing quality improvement processes in their own practices.

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“…Participants were recruited from our local movement disorder center via clinician referral and from movement disorder support groups in our catchment area. The broader purpose of the study was to capture information related to patient and care partner focused cognitive outcomes as a follow-up to our previous investigations into patientcentered outcomes for cognitive assessments and interventions (Benge et al, 2018;Raein et al, 2019). This follow up study was intended to focus specifically on individuals with milder cognitive changes and those who could tolerate a lengthy clinical and research battery assessment.…”

Section: Participant Recruitment and Screeningmentioning

confidence: 99%

Rapid communication: Preliminary validation of a telephone adapted Montreal Cognitive Assessment for the identification of mild cognitive impairment in Parkinson’s disease

Benge

Kiselica

2020

The Clinical Neuropsychologist

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Objective: In the current pandemic, tele-screening of neuropsychological status has become a necessity. Instruments developed for telephone screening are not as well validated as traditional neuropsychological measures. Therefore, the current study presents preliminary validation of a telephone version of the Montreal Cognitive Assessment (T-MoCA) in individuals with Parkinson's disease (PD). Method: Twenty-one persons with PD completed the T-MoCA along with a traditional neuropsychological battery. Diagnostic accuracy for the presence of PD-related mild cognitive impairment (MCI) and correlations with traditional neuropsychological measures are reported. Results: Individuals with MCI (n ¼ 9) scored lower than individuals without cognitive impairment (17.56 vs. 19.50; t ¼ À2.28, p ¼ .03, d ¼-1.00). Diagnostic accuracy for MCI ranged from 76% to 81%, with sensitivity ranging from 0.56 to 0.67 and specificity ranging from 0.92 to 1.00. Correlations of T-MoCA derived scores with traditional neuropsychological measures were quite modest, with the exception of the memory impairment scale. Conclusions: This rapid communication presents preliminary validation of the T-MoCA for use in individuals with PD. Caveats and implications for practical use in the current pandemic are discussed.

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Toward patient-centered outcomes for cognitive evaluations: the perspective of those affected by Parkinson’s disease

Cited by 6 publications

References 28 publications

Cognitive Problems and Their Clinical Assessment in Systemic Lupus Erythematosus: Contrasting Patient and Provider Views

Cognitive Problems and Their Clinical Assessment in Systemic Lupus Erythematosus: Contrasting Patient and Provider Views

Understanding the client and family experience of neuropsychological evaluation.

Rapid communication: Preliminary validation of a telephone adapted Montreal Cognitive Assessment for the identification of mild cognitive impairment in Parkinson’s disease

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