Denise Fyffe

Overview of the Spinal Cord Injury – Quality of Life (SCI-QOL) measurement system

Abstract Context/Objective The Spinal Cord Injury – Quality of Life (SCI-QOL) measurement system was developed to address the shortage of relevant and psychometrically sound patient reported outcome (PRO) measures available for clinical care and research in spinal cord injury (SCI) rehabilitation. Using a computer adaptive testing (CAT) approach, the SCI-QOL builds on the Patient Reported Outcomes Measurement Information System (PROMIS) and the Quality of Life in Neurological Disorders (Neuro-QOL) initiative. This initial manuscript introduces the background and development of the SCI-QOL measurement system. Greater detail is presented in the additional manuscripts of this special issue. Design Classical and contemporary test development methodologies were employed. Qualitative input was obtained from individuals with SCI and clinicians through interviews, focus groups, and cognitive debriefing. Item pools were field tested in a multi-site sample (n = 877) and calibrated using item response theory methods. Initial reliability and validity testing was performed in a new sample of individuals with traumatic SCI (n = 245). Setting Five Model SCI System centers and one Department of Veterans Affairs Medical Center across the United States. Participants Adults with traumatic SCI. Interventions n/a Outcome Measures n/a Results The SCI-QOL consists of 19 item banks, including the SCI-Functional Index banks, and 3 fixed-length scales measuring physical, emotional, and social aspects of health-related QOL (HRQOL). Conclusion The SCI-QOL measurement system consists of psychometrically sound measures for individuals with SCI. The manuscripts in this special issue provide evidence of the reliability and initial validity of this measurement system. The SCI-QOL also links to other measures designed for a general medical population.

Spinal cord injury-functional index: item banks to measure physical functioning in individuals with spinal cord injury.

OBJECTIVES To develop a comprehensive set of patient-reported items to assess multiple aspects of physical functioning relevant to the lives of people with spinal cord injury (SCI), and to evaluate the underlying structure of physical functioning. DESIGN Cross-sectional. SETTING Inpatient and community. PARTICIPANTS Item pools of physical functioning were developed, refined, and field tested in a large sample of individuals (N=855) with traumatic SCI stratified by diagnosis, severity, and time since injury. INTERVENTIONS None. MAIN OUTCOME MEASURE Spinal Cord Injury-Functional Index (SCI-FI) measurement system. RESULTS Confirmatory factor analysis (CFA) indicated that a 5-factor model, including basic mobility, ambulation, wheelchair mobility, self-care, and fine motor function, had the best model fit and was most closely aligned conceptually with feedback received from individuals with SCI and SCI clinicians. When just the items making up basic mobility were tested in CFA, the fit statistics indicated strong support for a unidimensional model. Similar results were demonstrated for each of the other 4 factors, indicating unidimensional models. CONCLUSIONS Though unidimensional or 2-factor (mobility and upper extremity) models of physical functioning make up outcomes measures in the general population, the underlying structure of physical function in SCI is more complex. A 5-factor solution allows for comprehensive assessment of key domain areas of physical functioning. These results informed the structure and development of the SCI-FI measurement system of physical functioning.

Development and initial evaluation of the spinal cord injury-functional index.

OBJECTIVES To describe the calibration of the Spinal Cord Injury-Functional Index (SCI-FI) and report on the initial psychometric evaluation of the SCI-FI scales in each content domain. DESIGN Cross-sectional survey followed by calibration data simulations. SETTING Inpatient and community settings. PARTICIPANTS A sample of participants (N=855) with traumatic spinal cord injury (SCI) recruited from 6 SCI Model Systems and stratified by diagnosis, severity, and time since injury. INTERVENTIONS None. MAIN OUTCOME MEASURE SCI-FI instrument. RESULTS Item response theory analyses confirmed the unidimensionality of 5 SCI-FI scales: basic mobility (54 items), fine motor function (36 items), self-care (90 items), ambulation (39 items), and wheelchair mobility (56 items). All SCI-FI scales revealed strong psychometric properties. High correlations of scores on simulated computer adaptive testing (CAT) with the overall SCI-FI domain scores indicated excellent potential for CAT to accurately characterize functional profiles of adults with SCI. Overall, there was very little loss of measurement reliability or precision using CAT compared with the full item bank; however, there was some loss of reliability and precision at the lower and upper ranges of each scale, corresponding to regions where there were few questions in the item banks. CONCLUSIONS Initial evaluation revealed that the SCI-FI achieved considerable breadth of coverage in each content domain and demonstrated acceptable psychometric properties. The use of CAT to administer the SCI-FI will minimize assessment burden, while allowing for the comprehensive assessment of the functional abilities of adults with SCI.

Family Physicians’ Barriers to Cancer Screening in Extremely Obese Patients

Extremely obese women are less likely than nonobese women to receive breast and cervical cancer screening examinations. Reasons for this disparity are unclear and may stem from patient and/or physician barriers. This sequential mixed‐methods study used individual in‐depth interviews of 15 family physicians followed by a mail survey of 255 family physicians (53% response rate) to understand the barriers they faced in performing cancer screening examinations in extremely obese women. Barriers fell into three main areas: (i) difficulty doing pelvic and breast exams; (ii) inadequate equipment; and (iii) challenges overcoming patient barriers and refusal. This led some physicians to avoid performing breast and pelvic examinations on extremely obese women. Having more knowledge about specific examination techniques was associated with less difficulty in palpating lumps on breast and pelvic examinations (P < 0.005). Physicians perceived that embarrassment, aversion to undressing, and avoidance of discussions related to their weight were the most frequent barriers extremely obese women had with getting physical examinations. Educating and/or motivating patients and addressing fears were strategies used most frequently when patients refused mammograms or Pap smears. Interventions focusing on physician barriers, such as educating them on specific examination techniques, obtaining adequate equipment and supplies, and providing resources to assist physicians in dealing with patient barriers and refusal, may be fruitful in increasing cancer screening rates in extremely obese patients. Future research studies testing the effectiveness of these strategies are needed to improve cancer outcomes in this high‐risk population.

The Association of Race, Cultural Factors, and Health-Related Quality of Life in Persons With Spinal Cord Injury

OBJECTIVE To examine the association of race and cultural factors with quality-of-life factors (participation, life satisfaction, perceived health status) in people with spinal cord injury (SCI). DESIGN Cross-sectional multisite study using structured questionnaires. SETTING Six National SCI Model Systems centers. PARTICIPANTS People with SCI (N=275; age ≥16y; SCI with discernable neurologic impairments; used power or manual wheelchair for >1y as primary means of mobility; nonambulatory except for exercise purposes). INTERVENTIONS None. MAIN OUTCOME MEASURES Participation (Craig Handicap Assessment and Reporting Technique Short Form); satisfaction (Satisfaction With Life Scale); and perceived health status (2 items from 36-Item Short Form Health Survey). RESULTS African American (n=96) with SCI reported more experiences of discrimination in health care, greater perceived racism, more health care system distrust, and lower health literacy than whites (n=156; P range, <.001-<.05). Participants who reported experiencing more discrimination in health care reported better occupational functioning (odds ratio [OR], 1.5; 95% confidence interval [CI], 1.07-2.09; P<.05). Those who perceived more racism in health care settings reported better occupational functioning (OR, 1.65; 95% CI, 1.12-2.43; P<.05) and greater perceived health (β=.36; 95% CI, .05-.68; P<.05). Those who reported more distrust in the health care system reported better current health compared with 1 year ago (β=.38; 95% CI, .06-.69; P<.05). Those who reported better communication with their health care provider reported higher levels of mobility (OR, 1.5; 95% CI, 1.05-2.13; P<.05) and better general health (β=.27; 95% CI, .01-.53; P<.05). CONCLUSIONS In this cross-sectional study of people with SCI, higher levels of perceived discrimination and racism and better communication with health care providers were associated with an increase in participation and functioning and improvements in perceptions of well-being. These associations are different from those reported in other study populations and warrant confirmation in future prospective studies.

Impact of Blood Pressure Dysregulation on Health-Related Quality of Life in Persons With Spinal Cord Injury: Development of a Conceptual Model

OBJECTIVES To identify medically relevant aspects of blood pressure dysregulation (BPD) related to quality of life in individuals with spinal cord injury (SCI), and to propose an integrated conceptual framework based on input from both individuals with SCI and their clinical providers. This framework will serve as a guide for the development of a patient-reported outcome (PRO) measure specifically related to BPD. DESIGN Three focus groups with individuals with SCI and 3 groups with SCI providers were analyzed using grounded-theory based qualitative analysis to ascertain how blood pressure impacts health-related quality of life (HRQOL) in individuals with SCI. SETTING Focus groups were conducted at 2 Veterans Affairs medical centers and a research center. PARTICIPANTS Individuals with SCI (n=27) in 3 focus groups and clinical providers (n=25) in 3 focus groups. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES Not applicable. RESULTS Qualitative analysis indicated that all focus groups spent the highest percentage of time discussing symptoms of BPD (39%), followed by precipitators/causes of BPD (16%), preventative actions (15%), corrective actions (12%), and the impact that BPD has on social or emotional functioning (8%). While patient/consumer focus groups and provider focus groups raised similar issues, providers spent more time discussing precipitators/causes of BPD and preventative actions (38%) than patient/consumer groups (24%). CONCLUSIONS These results suggest that BPD uniquely and adversely impacts HRQOL in persons with SCI. While both individuals with SCI and their providers highlighted the relevant symptoms of BPD, the SCI providers offered additional detailed information regarding the precipitators/causes and what can be done to prevent/treat BPD. Further, the results suggest that persons with SCI are aware of how BPD impacts their HRQOL and are able to distinguish between subtle signs and symptoms. These findings exemplify the need for a validated and sensitive clinical measurement tool that can assess the extent to which BPD impacts HRQOL in patients with SCI.

Explaining differences in episodic memory performance among older African Americans and Whites: the roles of factors related to cognitive reserve and test bias.

Older African Americans tend to perform poorly in comparison with older Whites on episodic memory tests. Observed group differences may reflect some combination of biological differences, measurement bias, and other confounding factors that differ across groups. Cognitive reserve refers to the hypothesis that factors, such as years of education, cognitive activity, and socioeconomic status, promote brain resilience in the face of pathological threats to brain integrity in late life. Educational quality, measured by reading test performance, has been postulated as an important aspect of cognitive reserve. Previous studies have not concurrently evaluated test bias and other explanations for observed differences between older African Americans and Whites. We combined data from two studies to address this question. We analyzed data from 273 African American and 720 White older adults. We assessed DIF using an item response theory/ordinal logistic regression approach. DIF and factors associated with cognitive reserve did not explain the relationship between race, and age- and sex-adjusted episodic memory test performance. However, reading level did explain this relationship. The results reinforce the importance of considering education quality, as measured by reading level, when assessing cognition among diverse older adults.

Racial and Ethnic Disparities in Functioning at Discharge and Follow-Up Among Patients With Motor Complete Spinal Cord Injury

OBJECTIVE To examine racial and ethnic differences in self-care and mobility outcomes for persons with a motor complete, traumatic spinal cord injury (SCI) at discharge and 1-year follow-up. DESIGN Retrospective cohort study. SETTING Sixteen rehabilitation centers contributing to the Spinal Cord Injury Model Systems (SCIMS) database. PARTICIPANTS Adults with traumatic, motor complete SCI (N=1766; American Spinal Injury Association Impairment Scale grade A or B) enrolled in the SCIMS between 2000 and 2011. Selected cases had complete self-reported data on race and ethnicity (non-Hispanic white, non-Hispanic black, or Hispanic) and motor FIM scores assessed at inpatient rehabilitation admission, discharge, and 1-year follow-up. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES Functional outcomes were measured by FIM self-care and mobility scores on a 1 to 7 FIM scale, at discharge and 1-year follow-up. RESULTS Multiple regression models stratified by neurologic category and adjusted for sociodemographic and injury characteristics assessed racial and ethnic group differences in FIM self-care and mobility change scores at discharge and 1-year follow-up. At discharge, non-Hispanic black participants with tetraplegia and paraplegia had significantly poorer gains in FIM self-care and mobility scores relative to non-Hispanic white and Hispanic participants. At 1-year follow-up, similar FIM self-care and mobility change scores were found across racial and ethnic groups within each neurologic category. CONCLUSIONS Non-Hispanic white and Hispanic participants had comparatively more improvement in self-care and mobility during inpatient rehabilitation compared with non-Hispanic black participants. At 1-year follow-up, no differences in self-care and mobility outcomes were observed across racial and ethnic groups. Additional research is needed to identify potential modifiable factors that may contribute to racially and ethnically different patterns of functional outcomes observed during inpatient rehabilitation.

Longitudinal Analysis of Hospitalization After Spinal Cord Injury: Variation Based on Race and Ethnicity

OBJECTIVE To examine the longitudinal effects of race/ethnicity on hospitalization among adults with spinal cord injury (SCI) in the 10-year period after initial injury. DESIGN Retrospective analysis of postinjury hospitalizations among non-Hispanic white, non-Hispanic African American, and Hispanic adults with SCI. SETTING Community. Data were extracted from the 2011 National Spinal Cord Injury Model Systems database. PARTICIPANTS Patients with traumatic SCI (N= 5146; white, 3175; African American, 1396; Hispanic, 575) who received rehabilitation at one of the relevant SCI Model Systems. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES Hospitalization, including rate of hospitalization, number of hospitalizations, and number of days hospitalized during the 12 months before the first-, fifth-, and tenth-year follow-up interviews for the SCI Model Systems. RESULTS Significant differences were found in rates of hospitalization at 1 and 5 years postinjury, with participants from Hispanic backgrounds reporting lower rates than either whites or African Americans. At 10 years postinjury, no differences were noted in the rate of hospitalization between racial/ethnic groups; however, compared with whites (P=.011) and Hispanics (P=.051), African Americans with SCI had 13 and 16 more days of hospitalization, respectively. Compared with the first year postinjury, the rate of hospitalization declined over time among whites, African Americans, and Hispanics; however, for African Americans, the number of days hospitalized increased by 12 days (P=.036) at 10 years versus 5 years postinjury. CONCLUSIONS Racial/ethnic variation appears to exist in postinjury hospitalization for individuals with SCI, with Hispanics showing the lowest rates of hospitalization at 1 and 5 years postinjury and African Americans having a significantly higher number of days hospitalized at 10 years postinjury. Potential explanations for these variations are discussed, and recommendations are made for potential changes to policy and clinical care.

Doctoral Clinical Geropsychology Training in a Primary Care Setting.

Abstract Most older adults diagnosed with a mental disorder receive treatment in primary care settings that lack personnel skilled in geropsychological diagnosis and treatment. The Ferkauf Older Adult Program of Yeshiva University endeavors to bridge this gap by providing training in geriatric psychology, through coursework and diverse clinical practica, to clinical psychology doctoral students within a large urban professional psychology program. In an innovative effort to provide the most disadvantaged elderly with comprehensive mental health treatment and maximize trainee exposure to an interdisciplinary treatment model, the program also pairs selected doctoral psychology trainees with medical residents to optimize integrated mental health service delivery for primary care elderly. The program has the following core objectives: (1) Infuse the mental health and aging knowledge base into the regular graduate curriculum; (2) Provide interdisciplinary training in geropsychological diagnostic and consultative services within an urban primary care setting; (3) Provide interdisciplinary training in the practice of psychological and neuropsychological evaluation of elderly; (4) Provide training in geropsychological psychotherapeutic intervention, including individual, couples/family, and brief/psycho-educational therapies with outpatient older adults. These objectives are achieved by pooling the resources of a graduate school of psychology, a local public hospital, and an academic medical center to achieve educational and clinical service goals.