Instructing to Impact: Exploration of Doctor of Physical Therapy Education Instruction of Social Determinants of Health and Health Equity for People with Disabilities.

OBJECTIVE: The aim of this study was to explore instruction of social determinants of health (SDOH) for people with disabilities (PWD) in Doctor of Physical Therapy (DPT) education programs. METHODS: A sequential mixed methods study informed by a 5-member disability community advisory panel was conducted. Qualitative semi-structured interviews with educators (n = 10) across 4 DPT programs in the Midwest were conducted and analyzed thematically. The qualitative findings formed the basis of the quantitative phase. An online survey was conducted with faculty of DPT programs in the United States (n = 254) with the most knowledge of instruction of SDOH and health equity for PWD (n = 74; 29% response rate). Quantitative data were analyzed with descriptive statistics and triangulated with qualitative data. RESULTS: SDOH for PWD is an emerging component of instruction in DPT curricula. Five themes included: emerging instruction of SDOH for PWD; conceptual frameworks informing instruction; instructional strategies; barriers to integration of SDOH for PWD; and facilitators to integration of SDOH for PWD. Quantitative analysis revealed that 71 respondents (95.9%) included disability in health equity discussions primarily focused on health care access. Limited time (n = 49; 66.2%) was the most frequently reported barrier, and educator interest in disability health equity was the most frequently reported facilitator (n = 62; 83.7%) to inclusion of the SDOH for PWD in health equity discussions. CONCLUSION: Opportunities exist in DPT curricula to build on instructional strategies, integrate SDOH frameworks, and amplify facilitators to integration of SDOH for PWD. IMPACT: To meet the needs of the 67 million Americans living with disabilities, students must have the knowledge and skills to address the complex needs of this historically marginalized population. Understanding the DPT education landscape around SDOH for PWD can guide DPT educators to more fully prepare their students to recognize and ameliorate health disparities faced by PWD.

Relationships at Work: Integrating the Perspectives of Disability Partners to Enhance a Peer Navigation Intervention.

Objective: The Our Peers-Empowerment and Navigational Support (OP-ENS) community-based participatory research study developed, implemented, and evaluated a peer navigator intervention aimed at improving health and healthcare access among Medicaid beneficiaries with disabilities. Peer navigators are community partners with physical disabilities trained to deliver structured peer support interventions that can address barriers to care. The purpose of this paper is two-fold. First, it explicates the relational work the peer navigators do with peers in delivering the intervention. Second, it illustrates how our community-based participatory approach empowered peer navigators to share their knowledge to refine the intervention. Methods: Clinical coordinator team meeting notes, critical incident documentation reports, peer navigator reflections (n = 20) were analyzed thematically to understand the peer navigators' relational work and intervention refinements. Following Labov's 6-stage approach to personal narratives and a collaborative writing process academic, clinical, and disability partners co-wrote descriptive exemplars to showcase these processes. Findings: Through the manualized OP-ENS intervention process, peer navigators helped peers achieve incremental successes. Peer navigators used their training and personal experiences to engage with peers and forge deep connections and relationships of trust. As a result, peers identified a wide-range of social health concerns, including poverty, social isolation, and racial and disability related discrimination that might otherwise go unaddressed. True to the principles of community-based participatory research, by fostering an equity-focused collaboration and listening to peer navigators, the project team implemented subtle but salient refinements to the intervention. Refinements included an explicit focus on social determinants of health affecting peers' health and wellbeing and supplemental trainings to help peer navigators support peers with significant mental health needs. Conclusion: The peer navigators were intentional and skilled at relationship building, thus complex elements which impact peers' health were addressed. Peer navigators were empowered to communicate their perspectives with the study team, who worked together to strengthen the intervention processes and infrastructure. This atmosphere of trust and collaboration amongst diverse stakeholders was instrumental to OP-ENS' successful implementation. Healthcare systems should consider implementing peer support interventions that are responsive to consumer input to address social determinants of health for persons with disabilities.

Cancer Survivors' Disability Experiences and Identities: A Qualitative Exploration to Advance Cancer Equity.

Eliminating cancer-related disparities is a global public health priority. Approximately 40% of cancer survivors experience long-term effects of cancer which can lead to activity limitations and participation restrictions; yet discussions of disability are largely absent from clinical and research cancer health equity agendas. The purpose of this study was to explore how cancer survivors experience and make sense of the long-term disabling effects of cancer and its treatments. In this qualitative study, data were collected via in-depth semi-structured interviews with survivors of breast cancer, head and neck cancer, and sarcoma (n = 30). Data were analyzed thematically using a 2-phase iterative process proceeding from descriptive to conceptual coding. Survivors experienced a wide range of long-term physical, sensory, cognitive, and emotional effects, that intertwined to restrict their participation in self-care, work, leisure, and social roles. While the interaction between impairments and participation restrictions meets the definition of disability; participants articulated a range of responses when asked about their disability identity, including (1) rejecting, (2) othering, (3) acknowledging, and (4) affirming. Findings may be indicative of structural and internalized ableism which can impede cancer care and survivorship. To support cancer survivors' transition to post-treatment life, cancer care providers should implement anti-ableist practices and engage in frank discussions about cancer's long-term impacts.

Inside an Occupational Therapy-Disability Community Partnership to Promote Health Management: Ethnography of a Research Collaboration.

IMPORTANCE: Disability studies-informed occupational therapy is predicated on full and equal partnerships among occupational therapy practitioners, researchers, and disability communities. Community-based participatory research (CBPR) is an approach to research that aligns with this vision yet is not without challenges. Understanding the tensions that arise from stakeholders' perspectives and priorities is critical for promoting collaboration between occupational therapy professionals and disability community partners. OBJECTIVE: To understand the group dynamics and relational processes of a CPBR team in the context of an intervention development study focused on health management for people with disabilities (PWD). DESIGN: This 9-mo ethnographic study included semistructured interviews and participant observation. Data were analyzed thematically. SETTING: Community-based multiagency collaborative. PARTICIPANTS: Nine participants (6 academic team members, 4 of whom were trained as occupational therapists; 2 disability partners; and 1 managed-care organization representative) took part. Three participants self-identified as PWD. FINDINGS: CBPR processes, although productive, were fraught with challenges. Team members navigated competing priorities, varying power dynamics, and multifaceted roles and identities. Flexibility was needed to address diverse priorities, respond to unexpected challenges, and facilitate the project's success. CONCLUSIONS AND RELEVANCE: Deep commitment to a shared goal of health care justice for PWD and team members' willingness to address tensions promoted successful collaboration. Intentional relationship building is needed for occupational therapy researchers to collaborate with members of disability communities as equal partners. What This Article Adds: Disability studies-informed occupational therapy research demands that team members intentionally nurture equitable relationships through shared governance, clear communication, and recognition of the fluid nature of power dynamics.

Rasch Analysis of Social Attitude Barriers and Facilitators to Participation for Individuals with Disabilities.

OBJECTIVES: To develop item banks of social attitude barriers and facilitators to participation and validate them with established instruments. DESIGN: We used the Rasch model to identify misfitting items and rating scale problems, calibrate items, and develop KeyForms and short forms. Correlations between the Social Attitude Barriers and Facilitators item banks with the Patient-Reported Outcomes Measurement Information System (PROMIS) Social Health domain and National Institutes of Health Toolbox Emotional Battery Social Relationships domain were computed to evaluate convergent and divergent validity. SETTING: Community-dwelling individuals traveled to 3 academic medical centers for testing. PARTICIPANTS: Participants (N=558) who had a primary impairment of stroke, spinal cord injury, or traumatic brain injury (mean age, 47.0±16.0y) completed 31 social attitude facilitator and 51 barrier items using a 5-point rating scale. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Item banks to measure social attitude barriers and facilitators for individuals with disabilities. RESULTS: After combining the "never" and "rarely" rating scale categories, 30 Facilitator items fit the Rasch model and demonstrated person reliability of 0.93. After collapsing the "never" and "rarely" rating scale categories, 45 Barrier items fit the Rasch model and demonstrated person reliability of 0.95. Ceiling and floor effects were negligible for both item banks. Facilitators and Barriers item banks were negatively correlated, and these banks were moderately correlated with PROMIS and Toolbox measures, providing evidence of convergent and divergent validity. CONCLUSIONS: Findings support the reliability and validity of the Social Attitude Facilitators and Barriers item banks. These item banks allow investigators and clinicians to measure perceptions of social attitudes, providing information that can guide individual interventions to reduce barriers and promote facilitators. Moderate correlations between the Social Attitude banks and PROMIS and Toolbox variables provide support for the measurement and theory of environmental influences on social health and participation.

ScreenABLE: Breast Cancer Screening among Women with Disabilities from Community Identified Challenges to Community-Based Programs.

BACKGROUND: Women with disabilities are an unrecognized cancer disparities population who experience well-documented barriers to breast cancer screening. There is a critical need for targeted, community-directed programing to address these disparities. OBJECTIVES: To describe the trajectory of a long-term community-academic partnership aimed at understanding and addressing breast cancer screening disparities among women with disabilities. METHODS: Phase 1 was a thematic qualitative focus group study (n = 40) with women with physical disabilities to understand their breast cancer screening experiences. Phase 2 was the application of an equity-focused knowledge translation (KT) process that brought together breast cancer survivors with disabilities and graduate applied health students in KT collaboratives to create innovative, evidence-informed knowledge products. Phase 3 included the development of community-based programming. RESULTS: In phase 1, women with disabilities identified provider and patient barriers to breast cancer screening, including a lack of provider knowledge and respect for individuals with disabilities, lack of accessibility, the history of stigma and mistreatment within the health care setting, and treatment fatigue. In phase 2, KT collaboratives created the short film "ScreenABLE" to educate providers and community members about physical and attitudinal barriers to cancer screening. In phase 3, community, academic, and clinical partners collaborated to create ScreenABLE Saturday, a wellness fair and free accessible mammograms, for women with disabilities with programming developed to directly address cancer screening barriers identified from the phase 1 research. CONCLUSIONS: Long-term sustained partnerships between academic, disability, and clinical partners are needed to address the complex issues that perpetuate breast cancer screening disparities among women with disabilities.

Recruiting and Retaining People With Disabilities for Qualitative Health Research: Challenges and Solutions.

There are 56.7 million people with disabilities (PWD) living in the United States; yet, PWD are significantly underrepresented in health research. Even when researchers purposively seek to include PWD in studies, challenges emerge related to recruitment and retention, leading to inadequate representation and surface understandings of this population. This in turn contributes to the perpetuation of implicit and explicit health disparities that are already experienced by this population. Grounded within a qualitative, community-based participatory health research framework, we highlight challenges associated with recruiting and retaining PWD in health research, including a critical analysis of the research enterprise structure, how this disables accessible research practices for PWD, and leads to continued skepticism among PWD regarding the value of participating in research. Finally, we propose solutions to create and maintain a culture of access and inclusion as well as long-term collaborative and equity-focused partnerships.

Preparedness and Mutuality Affect Quality of Life for Patients With Mechanical Circulatory Support and Their Caregivers.

BACKGROUND: Clinical and US regulatory guidelines for patients with mechanical circulatory support (MCS) require the identification of a caregiver to assist with MCS care. There is limited understanding of the impact of MCS caregiving on patients and caregivers. The purpose of this study was to examine how living with MCS affects the quality of life (QoL) of patients and their caregivers through the lens of preparedness and mutuality. METHODS AND RESULTS: The sample included 30 MCS patients and their caregivers. Semistructured qualitative interviews about factors contributing to QoL were conducted with patients and caregivers and analyzed using a 2-phase thematic process. Caregiving impacts QoL of MCS patients and their caregivers long term. When there was limited time to engage in decision-making about MCS implantation, people entered MCS caregiving relationships naive to its full demands. Although most people adjusted to the task demands, MCS caregiving had a significant impact, both positive and negative, on interpersonal relationships. We applied the concepts of preparedness and mutuality to help frame the understanding of the emergent themes of forced choice, adjustment, gratitude, relationship change, strain, and burden (both caregiver and patient perceived). Availability of networks of support was identified as a crucial resource. CONCLUSIONS: MCS caregiving affects QoL for both patients and caregivers. Specifically, preparedness, mutuality, and availability of supportive networks influence QoL of MCS patients and their caregivers. Caregiving relationships change over time. Long-term support by the MCS clinical team can help ensure that physical and emotional needs of MCS patients and caregivers are identified and addressed.

Our Peers-Empowerment and Navigational Support (OP-ENS): Development of a Peer Health Navigator Intervention to Support Medicaid Beneficiaries With Physical Disabilities.

People with disabilities (PWD) are a health disparities population who experience well-documented physical, structural, attitudinal, and financial barriers to health care. The disability rights community is deeply engaged in advocacy to promote health care justice for all PWD. As the community continues to work toward systems change, there is a critical need for community-directed interventions that ensure individuals with disabilities are able to access the health care services they need and are entitled to. Peer health navigator (PHN) programs have been shown to help people from diverse underserved communities break down barriers to health care. The PHN model has not been systematically adapted to meet the needs of PWD. In this article, we describe the collaborative process of developing Our Peers-Empowerment and Navigational Supports (OP-ENS), an evidence-informed PHN intervention for Medicaid beneficiaries with physical disabilities in Chicago, IL, USA. Our Peers-Empowerment and Navigational Supports is a 12-month community-based PHN intervention that pairs Medicaid beneficiaries with physical disabilities (peers) with disability PHNs who use a structured recursive process of barrier identification and asset mapping, goal setting, and action planning to help peers meet their health care needs. Our Peers-Empowerment and Navigational Supports was developed by a collaborative team that included disability rights leaders, representatives from a Medicaid managed care organization, and academic disability health care justice researchers. We highlight both the conceptual and empirical evidence that informed OP-ENS as well as the lessons learned that can assist future developers.

Racial Differences in Neurocognitive Outcomes Post-Stroke: The Impact of Healthcare Variables.

OBJECTIVES: The present study examined differences in neurocognitive outcomes among non-Hispanic Black and White stroke survivors using the NIH Toolbox-Cognition Battery (NIHTB-CB), and investigated the roles of healthcare variables in explaining racial differences in neurocognitive outcomes post-stroke. METHODS: One-hundred seventy adults (91 Black; 79 White), who participated in a multisite study were included (age: M=56.4; SD=12.6; education: M=13.7; SD=2.5; 50% male; years post-stroke: 1-18; stroke type: 72% ischemic, 28% hemorrhagic). Neurocognitive function was assessed with the NIHTB-CB, using demographically corrected norms. Participants completed measures of socio-demographic characteristics, health literacy, and healthcare use and access. Stroke severity was assessed with the Modified Rankin Scale. RESULTS: An independent samples t test indicated Blacks showed more neurocognitive impairment (NIHTB-CB Fluid Composite T-score: M=37.63; SD=11.67) than Whites (Fluid T-score: M=42.59, SD=11.54; p=.006). This difference remained significant after adjusting for reading level (NIHTB-CB Oral Reading), and when stratified by stroke severity. Blacks also scored lower on health literacy, reported differences in insurance type, and reported decreased confidence in the doctors treating them. Multivariable models adjusting for reading level and injury severity showed that health literacy and insurance type were statistically significant predictors of the Fluid cognitive composite (p<.001 and p=.02, respectively) and significantly mediated racial differences on neurocognitive impairment. CONCLUSIONS: We replicated prior work showing that Blacks are at increased risk for poorer neurocognitive outcomes post-stroke than Whites. Health literacy and insurance type might be important modifiable factors influencing these differences. (JINS, 2017, 23, 640-652).

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 people's 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 people's 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.

Patient, Caregiver, and Physician Work in Heart Failure Disease Management: A Qualitative Study of Issues That Undermine Wellness.

OBJECTIVE: To identify factors underlying heart failure hospitalization. METHODS: Between January 1, 2012, and May 31, 2012, we combined medical record reviews and cross-sectional qualitative interviews of multiple patients with heart failure, their clinicians, and their caregivers from a large academic medical center in the Midwestern United States. The interview data were analyzed using a 3-step grounded theory-informed process and constant comparative methods. Qualitative data were compared and contrasted with results from the medical record review. RESULTS: Patient nonadherence to the care plan was the most important contributor to hospital admission; however, reasons for nonadherence were complex and multifactorial. The data highlight the importance of patient education for the purposes of condition management, timeliness of care, and effective communication between providers and patients. CONCLUSION: To improve the consistency and quality of care for patients with heart failure, more effective relationships among patients, providers, and caregivers are needed. Providers must be pragmatic when educating patients and their caregivers about heart failure, its treatment, and its prognosis.

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 EFIB's 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 System's (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.

A Scholarship of Practice Revisited: Creating Community-Engaged Occupational Therapy Practitioners, Educators, and Scholars.

Trends in policy, practice, and research point to the need for a community-engaged Scholarship of Practice (SOP) model that can be used to inform the development of occupational therapy practitioners, educators, and researchers. This article describes a community-engaged SOP model, the evidence justifying the need for such a model, and strategies to effectively create community-engaged practitioners, educators and career scientists within occupational therapy. We highlight several examples of community-based participatory research to further inform this model, and in turn, translate this knowledge back to communities for action and systems change that can affect the lives of people with disabilities and the communities in which they seek to live and participate long term.

Theoretical foundations for the measurement of environmental factors and their impact on participation among people with disabilities.

The ascendance of the World Health Organization's International Classification of Functioning, Disability and Heath (ICF) as the global standard for describing and characterizing aspects of disability has refocused attention on the role that environmental factors (EFs) have on the health and participation of people with disabilities, both as individuals and as a group. There has been a rise in the development of instruments designed to measure EFs alone and in relation to participation. Some instrument developers have used the ICF as a theoretical base for instrument development and to substantiate content validity claims. We contend that this is a misapplication of the ICF. There is a need to step back and reexamine the role that environmental theories can play in developing a conceptually driven approach to measuring the interaction between EFs and participation. For this review, we draw on the fields of social, community, and developmental psychology; disability studies; gerontology; public health; and rehabilitation. We discuss different approaches to the measurement of EFs. We suggest that given the complex nature of EFs and their influence on participation, there is a need for a fresh approach to EF measurement. The thoughtful application of theories and the use of advanced psychometric, measurement, and e-technologies and data visualization methods may enable researchers and clinicians to better quantify, document, and communicate the dynamic interrelationship between EFs and participation and health outcomes for people with disabilities at the individual, group, and population levels.

Environmental barriers and supports to everyday participation: a qualitative insider perspective from people with disabilities.

OBJECTIVE: To describe environmental factors that influence participation of people with disabilities. DESIGN: Constant comparative, qualitative analyses of transcripts from 36 focus groups across 5 research projects. SETTING: Home, community, work, and social participation settings. PARTICIPANTS: Community-dwelling people (N=201) with diverse disabilities (primarily spinal cord injury, traumatic brain injury, and stroke) from 8 states. INTERVENTIONS: None. MAIN OUTCOME MEASURES: Environmental barriers and supports to participation. RESULTS: We developed a conceptual framework to describe how environmental factors influence the participation of people with disabilities, highlighting 8 domains of environmental facilitators and barriers (built, natural, assistive technology, transportation, information and technology access, social support and attitudes, systems and policies, economics) and a transactional model showing the influence of environmental factors on participation at the micro (individual), mesa (community), and macro (societal) levels. Focus group data validated some International Classification of Functioning, Disability and Health environmental categories while also bringing unique factors (eg, information and technology access, economic quality of life) to the fore. Data were used to construct items to enable people with disabilities to assess the impact of environmental factors on everyday participation from their firsthand experience. CONCLUSIONS: Participants with disabilities voiced the need to evaluate the impact of the environment on their participation at the immediate, community, and societal levels. The results have implications for assessing environmental facilitators and barriers to participation within rehabilitation and community settings, evaluating outcomes of environmental interventions, and effecting system and policy changes to target environmental barriers that may result in societal participation disparities versus opportunities.

Development of self-report measures of social attitudes that act as environmental barriers and facilitators for people with disabilities.

OBJECTIVE: To describe the development of new self-report measures of social attitudes that act as environmental facilitators or barriers to the participation of people with disabilities in society. DESIGN: A mixed-methods approach included a literature review; item classification, selection, and writing; cognitive interviews and field testing of participants with spinal cord injury (SCI), traumatic brain injury (TBI), or stroke; and rating scale analysis to evaluate initial psychometric properties. SETTING: General community. PARTICIPANTS: Individuals with SCI, TBI, or stroke participated in cognitive interviews (n=9); community residents with those same conditions participated in field testing (n=305). INTERVENTIONS: None. MAIN OUTCOME MEASURE: Self-report item pool of social attitudes that act as facilitators or barriers to people with disabilities participating in society. RESULTS: An interdisciplinary team of experts classified 710 existing social environment items into content areas and wrote 32 new items. Additional qualitative item review included item refinement and winnowing of the pool prior to cognitive interviews and field testing of 82 items. Field test data indicated that the pool satisfies a 1-parameter item response theory measurement model and would be appropriate for development into a calibrated item bank. CONCLUSIONS: Our qualitative item review process supported a social environment conceptual framework that includes both social support and social attitudes. We developed a new social attitudes self-report item pool. Calibration testing of that pool is underway with a larger sample to develop a social attitudes item bank for persons with disabilities.

Perceptions of the risks and benefits of upper limb transplantation among individuals with upper limb amputations.

BACKGROUND: Upper limb transplantation is a life-enhancing rather than life-saving procedure. Little research has investigated how individuals with upper limb amputations perceive the benefits and risks of this complex procedure. To address this knowledge gap, the authors conducted qualitative research with individuals with upper limb amputations to understand their perspectives. METHODS: Twenty-two individuals with upper limb amputations (age range, 24 to 73 years) participated in a focus group (n=5) or semistructured interview (n=17) about the benefits and risks of upper limb transplantation. Data were analyzed by means of constant comparative methods and a two-phase analysis process. RESULTS: Participants identified enhanced functional performance and improved appearance as the greatest potential benefits. Over half of participants indicated that function was a more important consideration than appearance. Enhanced function performance was a relative concept strongly influenced by individual expectations, which varied widely. Increased sensation, psychological well-being, and social acceptability were also described as potential benefits. Identified risks included health risks and the demands of transplantation and recovery, decreased functional performance, and uncertainty over outcomes from upper limb transplantation as an experimental procedure. Participants also expressed concerns regarding the psychological impact of negative outcomes and adverse events. CONCLUSIONS: Participants had a large variation in their perceived importance of the many risks and benefits of upper limb transplantation. These findings elucidate how potential upper limb transplantation candidates evaluate the benefits and risks of the procedure. The findings can also inform important issues to address and outcomes to assess in the pretransplant and posttransplant settings.

Using the NIH Toolbox in special populations: considerations for assessment of pediatric, geriatric, culturally diverse, non-English-speaking, and disabled individuals.

BACKGROUND: In order to develop health outcomes measures that are relevant and applicable to the general population, it is essential to consider the needs and requirements of special subgroups, such as the young, elderly, disabled, and people of different ethnic and cultural backgrounds, within that population. METHODS: The NIH Toolbox project convened several working groups to address assessment issues for the following subgroups: pediatric, geriatric, cultural, non-English-speaking, and disabled. Each group reviewed all NIH Toolbox instruments in their entirety. RESULTS: Each working group provided recommendations to the scientific study teams regarding instrument content, presentation, and administration. When feasible and appropriate, instruments and administration procedures have been modified in accordance with these recommendations. CONCLUSION: Health outcome measurement can benefit from expert input regarding assessment considerations for special subgroups.