Ana Miskovic

Agreement between responses from community-dwelling persons with stroke and their proxies on the NIH Neurological Quality of Life (Neuro-QoL) Short Forms

OBJECTIVE To examine agreement between patient and proxy responses on the Quality of Life in Neurological Disorders (Neuro-QoL) instruments after stroke. DESIGN Cross-sectional observational substudy of the longitudinal, multisite, multicondition Neuro-QoL validation study. SETTING In-person, interview-guided, patient-reported outcomes. PARTICIPANTS Convenience sample of dyads (N=86) of community-dwelling persons with stroke and their proxy respondents. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES Dyads concurrently completed short forms of 8 or 9 items for the 13 Neuro-QoL adult domains using the patient-proxy perspective. Agreement was examined at the scale-level with difference scores, intraclass correlation coefficients (ICCs), effect size statistics, and Bland-Altman plots, and at the item-level with kappa coefficients. RESULTS We found no mean differences between patients and proxies on the Applied Cognition-General Concerns, Depression, Satisfaction With Social Roles and Activities, Stigma, and Upper Extremity Function (Fine Motor, activities of daily living) short forms. Patients rated themselves more favorably on the Applied Cognition-Executive Function, Ability to Participate in Social Roles and Activities, Lower Extremity Function (Mobility), Positive Affect and Well-Being, Anxiety, Emotional and Behavioral Dyscontrol, and Fatigue short forms. The largest mean patient-proxy difference observed was 3 T-score points on the Lower Extremity Function (Mobility). ICCs ranged from .34 to .59. However, limits of agreement showed dyad differences exceeding ±20 T-score points, and item-level agreement ranged from not significant to weighted kappa=.34. CONCLUSIONS Proxy responses on Neuro-QoL short forms can complement responses of moderate- to high-functioning community-dwelling persons with stroke and augment group-level analyses, but do not substitute for individual patient ratings. Validation is needed for other stroke populations.

Perceptions of Person-Centered Care Following Spinal Cord Injury

OBJECTIVES To (1) evaluate perceptions of person-centered care (PCC) in individuals with traumatic spinal cord injury (SCI); and (2) examine perceived differences in PCC concepts between patients continuing to receive any services from a Spinal Cord Injury Model Systems (SCIMS) facility and those who are not. DESIGN We used a cross-sectional design, mailed a paper survey, and followed up with a second mailing to nonrespondents after 4 weeks. SETTING Community. PARTICIPANTS Individuals (N=326) who received initial rehabilitation at an SCIMS facility and agreed to participate in this research study. We distinguished respondents who received any SCIMS outpatient services in the past 2 years (SCIMS users, n=137) or longer ago (SCIMS nonusers, n=189). INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES Participants completed the Patient Activation Measure (PAM), the Patient Assessment of Chronic Illness Care, the Global Practice Experience measure, and 5 Press-Ganey questions that assessed key elements of patient- and family-centered care. RESULTS Patient perspectives of chronic illness care were more positive in the SCIMS users than nonusers (3.15 vs 2.91, P<.05); the difference is attributable primarily to higher subscale scores on goal setting and tailoring. The SCIMS users and nonusers did not differ in terms of PAM overall score or activation stage, Global Practice Experience, or Press-Ganey scores. CONCLUSIONS SCIMS users and nonusers differed on perceptions of chronic illness care (largely the goal-setting and tailoring component), which were more favorable for Model System users than nonusers. Results can guide strategies to enhance PCC practices after inpatient rehabilitation.

Measuring Environmental Factors: Unique and Overlapping International Classification of Functioning, Disability and Health Coverage of 5 Instruments

OBJECTIVES To describe the unique and overlapping content of the newly developed Environmental Factors Item Banks (EFIB) and 7 legacy environmental factor instruments, and to evaluate the EFIBs construct validity by examining associations with legacy instruments. DESIGN Cross-sectional, observational cohort. SETTING Community. PARTICIPANTS A sample of community-dwelling adults with stroke, spinal cord injury, and traumatic brain injury (N=568). INTERVENTIONS None. MAIN OUTCOME MEASURES EFIB covering domains of the built and natural environment; systems, services, and policies; social environment; and access to information and technology; the Craig Hospital Inventory of Environmental Factors (CHIEF) short form; the Facilitators and Barriers Survey/Mobility (FABS/M) short form; the Home and Community Environment Instrument (HACE); the Measure of the Quality of the Environment (MQE) short form; and 3 of the Patient Reported Outcomes Measurement Information Systems (PROMIS) Quality of Social Support measures. RESULTS The EFIB and legacy instruments assess most of the International Classification of Functioning, Disability and Health (ICF) environmental factors chapters, including chapter 1 (products and technology; 75 items corresponding to 11 codes), chapter 2 (natural environment and human-made changes; 31 items corresponding to 7 codes), chapter 3 (support and relationships; 74 items corresponding to 7 codes), chapter 4 (attitudes; 83 items corresponding to 8 codes), and chapter 5 (services, systems, and policies; 72 items corresponding to 16 codes). Construct validity is provided by moderate correlations between EFIB measures and the CHIEF, MQE barriers, HACE technology mobility, FABS/M community built features, and PROMIS item banks and by small correlations with other legacy instruments. Only 5 of the 66 legacy instrument correlation coefficients are moderate, suggesting they measure unique aspects of the environment, whereas all intra-EFIB correlations were at least moderate. CONCLUSIONS The EFIB measures provide a brief and focused assessment of ICF environmental factor chapters. The pattern of correlations with legacy instruments provides initial evidence of construct validity.

Measuring Access to Information and Technology: Environmental Factors Affecting Persons With Neurologic Disorders

OBJECTIVE To develop and validate a patient-reported measure of access to information and technology (AIT) for persons with spinal cord injury, stroke, or traumatic brain injury. DESIGN A mixed-methods approach was used to develop items, refine them through cognitive interviews, and evaluate their psychometric properties. Item responses were evaluated with the Rasch rating scale model. Correlational and analysis-of-variance methods were used to evaluate construct validity. SETTING Community-dwelling individuals participated in telephone interviews or traveled to the academic medical centers where this research took place. PARTICIPANTS Individuals with a diagnosis of spinal cord injury, stroke, or traumatic brain injury (aged ≥18y, English speaking) participated in cognitive interviews (n=12 persons), field testing of the items (n=305 persons), and validation testing of the final set of items (n=604 persons). INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES A set of items to measure AIT for people with disabilities. RESULTS A user-friendly multimedia touchscreen was used for self-administration of the items. A 23-item AIT measure demonstrated good evidence of internal consistency reliability, and content and construct validity. CONCLUSIONS This new AIT measure will enable researchers and clinicians to determine to what extent environmental factors influence health outcomes and social participation in people with disabilities. The AIT measure could also provide disability advocates with more specific and detailed information about environmental factors to lobby for elimination of barriers.

Feasibility of Computerized Adaptive Testing for Collection of Patient-Reported Outcomes After Inpatient Rehabilitation

OBJECTIVE To evaluate the feasibility of computer adaptive testing (CAT) using an Internet or telephone interface to collect patient-reported outcomes after inpatient rehabilitation and to examine patient characteristics associated with completion of the CAT-administered measure and mode of administration. DESIGN Prospective cohort study of patients contacted approximately 4 weeks after discharge from inpatient rehabilitation. Patients selected an Internet or telephone interface. SETTING Rehabilitation hospital. PARTICIPANTS Patients (N=674) with diagnoses of neurologic, orthopedic, or medically complex conditions. INTERVENTIONS None. MAIN OUTCOME MEASURE CAT version of the Community Participation Indicators (CAT-CPI). RESULTS From an eligible pool of 3221 patients, 674 (21%) agreed to complete the CAT-CPI. Patients who agreed to complete the CAT-CPI were younger and reported slightly higher satisfaction with overall care than those who did not participate. Among these patients, 231 (34%) actually completed the CAT-CPI; 141 (61%) selected telephone administration, and 90 (39%) selected Internet administration. Decreased odds of completing the CAT-CPI were associated with black and other race; stroke, brain injury, or orthopedic and other impairments; and being a Medicaid beneficiary, whereas increased odds of completing the CAT-CPI were associated with longer length of stay and higher discharge FIM cognition measure. Decreased odds of choosing Internet administration were associated with younger age, retirement status, and being a woman, whereas increased odds of choosing Internet administration were associated with higher discharge FIM motor measure. CONCLUSIONS CAT administration by Internet and telephone has limited feasibility for collecting postrehabilitation outcomes for most rehabilitation patients, but it is feasible for a subset of patients. Providing alternative ways of answering questions helps assure that a larger proportion of patients will respond.

Relational empathy and holistic care in persons with spinal cord injuries

Objective: Describe perceptions of persons with SCI on their receipt of holistic care and relational empathy during health care encounters. Design: Mailed survey. Participants/Setting: Individuals with SCI who received care from the largest suppliers of SCI care and rehabilitation (Veterans Health Administration and SCI Model Systems). Outcome Measures: Using a survey and administrative databases, we collected demographic and injury characteristics, health status, health conditions, and the main outcome: Consultation and Relational Empathy (CARE) measure. Results: The sample included 450 individuals with SCI (124 Veterans and 326 civilians). Response rate was 39% (450/1160). Analyses were conducted on patients with complete data (n = 389). Veterans and civilians with SCI differed across many demographic characteristics, age at injury, and etiology, but mean CARE scores were equivalent. Fewer than half of the full SCI cohort had CARE scores above the normative value of 43. Having a recent pressure ulcer showed a trend for lower odds of having a normative or higher CARE score. Odds of having an above-normative CARE score were nearly 2 times greater for individuals with tetraplegia, and odds were higher for those with higher physical and mental health status. Conclusions: Higher physical and mental health status and tetraplegia were each independently associated with greater perceptions of holistic care and empathy in the therapeutic patient-provider relationship. Limited empathy, communication, and holistic care may arise when providers focus on disease/disease management, rather than on patients as individuals. Frequent health care use and secondary conditions may affect empathy and holistic care in encounters, making it essential to understand and employ efforts to improve the therapeutic relationship between patients with SCI and their providers.

Perceptions of shared decision-making among patients with spinal cord injuries/disorders.

Background: Individuals with spinal cord injuries/disorders (SCI/D) are interested in, and benefit from, shared decision making (SDM). Objective: To explore SDM among individuals with SCI/D and how demographics and health and SCI/D characteristics are related to SDM. Method: Individuals with SCI/D who were at least 1 year post injury, resided in the Chicago metropolitan area, and received SCI care at a Veterans Affairs (VA; n = 124) or an SCI Model Systems facility (n = 326) completed a mailed survey measuring demographics, health and SCI/D characteristics, physical and mental health status, and perceptions of care, including SDM, using the Combined Outcome Measure for Risk Communication and Treatment Decision-Making Effectiveness (COMRADE) that assesses decision-making effectiveness (effectiveness) and risk communication (communication). Bivariate analyses and multiple linear regression were used to identify variables associated with SDM. Results: Participants were mostly male (83%) and White (70%) and were an average age of 54 years (SD = 14.3). Most had traumatic etiology, 44% paraplegia, and 49% complete injury. Veteran/civilian status and demographics were unrelated to scores. Bivariate analyses showed that individuals with tetraplegia had better effectiveness scores than those with paraplegia. Better effectiveness was correlated with better physical and mental health; better communication was correlated with better mental health. Multiple linear regressions showed that tetraplegia, better physical health, and better mental health were associated with better effectiveness, and better mental health was associated with better communication. Conclusion: SCI/D and health characteristics were the only variables associated with SDM. Interventions to increase engagement in SDM and provider attention to SDM may be beneficial, especially for individuals with paraplegia or in poorer physical and mental health.

Health and Functional Literacy in Physical Rehabilitation Patients

Background: People with disabilities, who face multiple barriers to care, experience health disparities, yet few studies have measured health literacy in this population. Objective: This study evaluated functional literacy, health literacy, fluid cognitive function, and self-reported health in people who live in community dwellings with spinal cord injury, stroke, or traumatic brain injury. Methods: Participants with a traumatic spinal cord injury, stroke, or traumatic brain injury, one-year postinjury, and age 18 to 85 years, completed a battery of instruments at three medical centers in the Midwestern U.S.: functional literacy (word recognition, vocabulary knowledge), health literacy (comprehension of prose, document, and quantitative health information), fluid cognitive function (memory, executive function, and processing speed), and patient-reported outcomes (mobility, fatigue, sadness, anxiety, social function, and overall health). Key Results: There were strong correlations between functional literacy, health literacy, and fluid cognitive function. After adjustment for sociodemographic and clinical characteristics, higher health literacy was associated with better mobility, less anxiety, and better overall health; higher functional literacy was associated with less anxiety and better overall health; and higher fluid cognitive function was associated with better mobility, less sadness, better social function, and better overall health. Conclusions: To effectively address limited health literacy among people with spinal cord injury, stroke, and traumatic brain injury, and ensure that they are able to be informed partners in their health care, intervention is required at the level of patients, providers, and health care delivery systems. A special consideration is to ensure that health information is both well-targeted to peoples health literacy levels and accessible for people with a range of physical, cognitive, and sensory limitations. The multimedia self-administered health literacy measure used in this study could be useful to rehabilitation providers and designers of health information and interfaces. [Health Literacy Research and Practice. 2017;1(2):e71–e85.] Plain Language Summary: Health literacy represents peoples abilities to obtain, understand, and use health information to make informed decisions about their health and health care. People with disabilities face physical, attitudinal, economic, and structural barriers to care. Consideration of health literacy in rehabilitation practice can enhance the effectiveness of the patient-clinician relationship and help address the needs of this population.

Agreement Between Community-Dwelling Persons With Stroke and Their Proxy Responders on the Neuro-QoL Instruments

Objective(s): To identify differences in agreement between communitydwelling persons with stroke and their proxy responses on the short-form versions of the Quality of Life in Neurological Disorders (Neuro-QoL) instruments. Design: Cross-sectional observational sub-study of the longitudinal, multisite, multi-condition Neuro-QoL validation study. Setting: In-person interview-guided patient-reported outcomes. Participants: Convenience sample of 86 dyads of community-dwelling persons with stroke and their proxy respondents. Interventions: N/A. Main Outcome Measure(s): Dyads concurrently completed short-forms of 8 or 9 items each for the 13 Neuro-QoL domains using the patient-proxy perspective. Difference scores, intraclass correlation coefficients (ICCs), effect size statistics, and Bland-Altman plots were examined to determine the nature and extent of proxy response bias. Results: We found no differences between patient and proxy scores on the Applied Cognition-General Concerns, Depression, Satisfaction with Social Roles and Activities, Stigma, and Upper Extremity Function (Fine Motor) short forms. Stroke patients rated themselves more favorably on the Applied Cognition-Executive Function, Ability to Participate in Social Roles and Activities, Lower Extremity Function (Mobility), Positive Affect and Well-Being, Anxiety, Fatigue, Emotional and Behavioral Dyscontrol, and Fatigue short-forms. We found no consistent pattern of differences in physical, mental-cognitive, mental-emotional, or social health HRQOL domains. The largest mean patient-proxy difference observed was 3 T-score points on the Lower Extremity Function (Mobility), which represents 0.3 SD on the T-score metric. However, Bland-Alman plots demonstrated substantial variation in difference scores among dyads. Conclusions: Proxy responses on Neuro-QoL short forms can complement or substitute for responses of moderate to high-functioning communitydwelling persons with stroke in the evaluation of post stroke research interventions; however proxy individual proxy responses may vary substantially. Additional validation is needed for other stroke populations.