Agreement between proxy- and self-report scores on PROMIS health-related quality of life domains in pediatric burn survivors: a National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System Study.

PURPOSE: To examine agreement between pediatric burn survivor self- and caregiver proxy-report on multiple PROMIS domains and examine factors associated with differences between self- and proxy-reports. METHODS: Children 8-17 years of age and their caregivers completed PROMIS measures (physical function, depression, peer relationships, pain interference, and anger) between 6 months and 15 years after injury. Self- and proxy-report scores were compared using Wilcoxon sign rank test, Cohen's effect size, and intraclass correlation coefficients (ICC) and by agreement across severity of symptoms based on recommended cutoffs. Ordinary least squares regression analyses examined child- (self-report score, age, gender, and ethnicity) and proxy-related (relationship to child) factors associated with score differences. RESULTS: Two hundred and seventy four child-caregiver pairs completed the PROMIS measures. Mean child age was 13.0 (SD:3) years. Caregivers reported significantly worse scores than the child on physical function, pain, and anger (all p ≤ 0.01). The effect sizes were small across all domains except physical function. Similarly, ICCs were all of moderate agreement. The percentage of dyads in agreement by severity groups was high with only 5%-9% of pairs discordant. Only higher self-report score was associated (all p < 0.05) with greater differences across all domains in regression analyses. CONCLUSIONS: This study supports the use of pediatric proxy PROMIS depression, physical function, peer relationships, pain interference, and anger scales in pediatric burn patients. Although agreement was moderate to good, assessing proxy-report alone as a surrogate should only be considered when self-report is not possible or practical. Caregivers typically report slightly worse severity of symptoms than children across all domains.

National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System: Review of Program and Database.

The Burn Model System (BMS) centers program was created in 1994 to evaluate the long-term outcomes of burn injuries. As part of this multicenter program, a comprehensive longitudinal database was developed to facilitate the study of a number of functional and psychosocial outcomes after burn injury. In this article, we provide an overview of the data collection procedures, measures selection process, and an overview of the participant data collected between 1994 and 2016. Surveys were administered during hospitalization and at 6, 12, and 24 months after discharge, and in the most recent funding cycle, data collection at every 5 years postinjury was added. More than 7200 people with burn injury were eligible to participate in the BMS National Longitudinal Database. Of these, >5900 (82%) were alive at discharge and consented to follow-up data collection. The BMS National Longitudinal Database represents a large sample of people with burn injury, including information on demographic characteristics, injury characteristics, and health outcomes. The database is publicly available and can be used to examine the effect of burn injury on long-term outcomes.

Satisfaction With Life Over Time in People With Burn Injury: A National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System Study.

OBJECTIVE: To examine trajectories of satisfaction with life (SWL) of burn survivors over time and their clinical, demographic, and other predictors. DESIGN: Longitudinal survey. SETTING: Not applicable. PARTICIPANTS: Individuals ≥18 years of age who underwent burn-related surgery and met one of the following criteria: (1) >10% total body surface area (TBSA) burn and ≥65 years of age; (2) >20% TBSA burn and 18 to 64 years of age; (3) electrical high voltage/lightning injury; or (4) burn injury to the hands, face, or feet. The participants (N=378) had data on all variables of interest and were included in the analyses. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Satisfaction With Life Scale. RESULTS: Growth mixture modeling identified 2 classes with different trajectories of SWL. The mean SWL of the unchanged class (n=224, 60%) was flat over 2 years with high initial SWL scores. The SWL of the dissatisfied class (n=154, 40%) was at the low end of average and got progressively worse over time. CONCLUSIONS: SWL after burn injury can be described by 2 different trajectories with substantially different outcomes. Older age, worse mental health, and unemployment prior to injury predicted membership in the dissatisfied class. Additional services could be provided to those at high risk for low SWL to achieve better outcomes.

Research priorities for rehabilitation and aging with HIV: a framework from the Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC).

BACKGROUND: People living with HIV are living longer, and can experience physical, mental and social health challenges associated with aging and multimorbidity. Rehabilitation is well positioned to address disability and maximize healthy aging. An international collaborative network, called the Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC), works to guide this emerging field. In this article, we report findings from CIHRRC's aim to identify emerging research priorities in HIV, aging and rehabilitation from the perspectives of people living with HIV, clinicians, researchers, representatives from community organizations and policy stakeholders. METHODS: We conducted a multi-stakeholder multi-method international consultation with people living with HIV, researchers, clinicians and representatives of community-based organizations to identify research priorities in HIV, aging and rehabilitation. Stakeholders identified research priorities during a one-day International Forum comprised of presentations and facilitated discussion. We collated and analyzed data using content analytical techniques, resulting in a framework of research priorities. RESULTS: Sixty-nine stakeholders from countries including Canada (n = 62; 90%), the United Kingdom (n = 5; 7%), United States (n = 1; 1%) and Australia (n = 1; 1%) attended the International Forum on HIV, Aging and Rehabilitation Research. Stakeholders represented community-based organizations (n = 20; 29%), academic institutions (n = 18; 26%), community or institutional healthcare organizations (n = 11; 16%), research or knowledge production organizations (n = 10; 14%), and organizations representing government or industry (n = 10; 14%). The Framework of Research Priorities in HIV, Aging and Rehabilitation includes seven research priorities: (1) nature, extent and impact of disability, concurrent health conditions and chronic inflammation with HIV; (2) prevalence, severity and impact of frailty; (3) community and social participation aging with HIV; (4) strategies for chronic disease management and healthy aging with HIV; (5) facilitators and barriers to access and engagement in, rehabilitation; (6) effectiveness of rehabilitation interventions for healthy aging with HIV; and (7) advancing development and use of patient reported outcome measures in HIV and aging. The Framework highlights methodological considerations to approach the priorities and the importance of knowledge translation and exchange to apply research knowledge into practice, programs and policy. CONCLUSIONS: These priorities offer a foundation for collaboration among international and multidisciplinary teams to advance the field of HIV, aging and rehabilitation in order to promote healthy aging with HIV.

Leadership of the ultimate interdisciplinary team: Rehabilitation science at NIH.

BACKGROUND: Support for rehabilitation research at the National Institutes of Health (NIH) is robust and evolving. Since the time of its Blue Ribbon Panel on Rehabilitation Research, NIH has participated in several initiatives to coordinate the science and advance the field. DISCUSSION: Collaborative teams must continue to address key limitations in the field, including the desire for broad application of rehabilitation interventions, the need for basic science and translational research, the support of clinical trials and standard approaches, and the integration of technology. CONCLUSION: Rehabilitation medicine is poised for critical advancements if interdisciplinary teams continue to work collaboratively to understand and address the needs of people with temporary or permanent functional limitations.

Knowledge Translation: The Bridging Function of Cochrane Rehabilitation.

Cochrane Rehabilitation is aimed to ensure that all rehabilitation professionals can apply Evidence Based Clinical Practice and take decisions according to the best and most appropriate evidence in this specific field, combining the best available evidence as gathered by high-quality Cochrane systematic reviews, with their own clinical expertise and the values of patients. This mission can be pursued through knowledge translation. The aim of this article is to shortly present what knowledge translation is, how and why Cochrane (previously known as Cochrane Collaboration) is trying to reorganize itself in light of knowledge translation, and the relevance that this process has for Cochrane Rehabilitation and in the end for the whole world of rehabilitation. It is well known how it is difficult to effectively apply in everyday life what we would like to do and to apply the scientific knowledge in the clinical field: this is called the know-do gap. In the field of evidence-based medicine, where Cochrane belongs, it has been proven that high-quality evidence is not consistently applied in practice. A solution to these problems is the so-called knowledge translation. In this context, Cochrane Rehabilitation is organized to provide the best possible knowledge translation in both directions (bridging function), obviously toward the world of rehabilitation (spreading reviews), but also to the Cochrane community (production of reviews significant for rehabilitation). Cochrane is now strongly pushing to improve its knowledge translation activities, and this creates a strong base for Cochrane Rehabilitation work, focused not only on spreading the evidence but also on improving its production to make it more meaningful for the world of rehabilitation.

Addressing the Evidence Gap in Stroke Rehabilitation for Complex Patients: A Preliminary Research Agenda.

Evidence suggests that a stroke occurs in isolation (no comorbid conditions) in less than 6% of patients. Multimorbidity, compounded by psychosocial issues, makes treatment and recovery for stroke increasingly complex. Recent research and health policy documents called for a better understanding of the needs of this patient population, and for the development and testing of models of care that meet their needs. A research agenda specific to complexity is required. The primary objective of the think tank was to identify and prioritize research questions that meet the information needs of stakeholders, and to develop a research agenda specific to stroke rehabilitation and patient complexity. A modified Delphi and World Café approach underpinned the think tank meeting, approaches well recognized to foster interaction, dialogue, and collaboration between stakeholders. Forty-three researchers, clinicians, and policymakers attended a 2-day meeting. Initial question-generating activities resulted in 120 potential research questions. Sixteen high-priority research questions were identified, focusing on predetermined complexity characteristics-multimorbidity, social determinants, patient characteristics, social supports, and system factors. The final questions are presented as a prioritized research framework. An emergent result of this activity is the development of a complexity and stroke rehabilitation research network. The research agenda reflects topics of importance to stakeholders working with stroke patients with increasingly complex care needs. This robust process resulted in a preliminary research agenda that could provide policymakers with the evidence needed to make improvements toward better-organized services, better coordination between settings, improved patient outcomes, and lower system costs.

Turning Data Into Information: Opportunities to Advance Rehabilitation Quality, Research, and Policy.

Attention to health care quality and safety has increased dramatically. The internal focus of an organization is not without influence from external policy and research findings. Compared with other specialties, efforts to align and advance rehabilitation research, practice, and policy using electronic health record data are in the early stages. This special communication defines quality, applies the dimensions of quality to rehabilitation, and illustrates the feasibility and utility of electronic health record data for research on rehabilitation care quality and outcomes. Using data generated at the point of care provides the greatest opportunity for improving the quality of health care, producing generalizable evidence to inform policy and practice, and ultimately benefiting the health of the populations served.

Thirty Years of National Institute on Disability, Independent Living, and Rehabilitation Research Traumatic Brain Injury Model Systems Center Research-An Update.

The Traumatic Brain Injury Model Systems Center (TBIMSC) program was established by the National Institute on Disability, Independent Living, and Rehabilitation Research in 1987, with the goal of conducting research to improve the care and outcomes for individuals with moderate-to-severe traumatic brain injury (TBI). This article provides an update on TBIMSC research program activities since 2010 when a similar article was published. It includes (1) discussion of TBIMSC program management and infrastructure; (2) detail on the management, data quality, access, use, and knowledge translation of the TBIMSC National Database, with more than 16 000 participants with follow-up out to 25 years postinjury to date; (3) an overview of the TBIMSC site-specific studies and collaborative module research; (4) highlights of several collaborative initiatives between the TBIMSCs and other federal, advocacy, and research stakeholders; (5) an overview of the vast knowledge translation occurring through the TBIMSC program; and (6) discussion of issues that impact on the data collection methods for and contents of the TBIMSC National Database. On the occasion of the 30th anniversary of the TBIMSC program, this article highlights many of the accomplishments of this well-established, multicenter TBI research consortium.

Delphi Study to Determine Rehabilitation Research Priorities for Older Adults With Cancer.

OBJECTIVE: To solicit expert opinions and develop consensus around the research that is needed to improve cancer rehabilitation for older adults. DESIGN: Delphi methods provided a structured process to elicit and prioritize research questions from national experts. SETTING: National, Web-based survey. PARTICIPANTS: Members (N=32) of the American Congress of Rehabilitation Medicine completed at least 1 of 3 investigator-developed surveys. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: In the first survey, participants identified up to 5 research questions that needed to be answered to improve cancer rehabilitation for older adults. In 2 subsequent surveys, participants viewed the compilation of questions, rated the importance of each question, and identified the 5 most important questions. This generated priority scores for each question. Consensus scores were created to describe the degree of agreement around the priority of each question. RESULTS: Highest priority research concerns the epidemiology and measurement of function and disability in older adult cancer survivors; the effects of cancer rehabilitation interventions on falls, disability, participation, survival, costs, quality of care, and health care utilization; and testing models of care that facilitate referrals from oncology to rehabilitation providers as part of coordinated, multicomponent care. CONCLUSIONS: A multipronged approach is needed to fill these gaps, including targeted funding opportunities developed with an advisory panel of cancer rehabilitation experts, development of a research network to facilitate novel collaborations and grant proposals, and coordinated efforts of clinical groups to advocate for funding, practice change, and policy change.

Military-Civilian Collaborations for mTBI Rehabilitation Research in an Active Duty Population: Lessons Learned From the Assessment of Military Multitasking Performance Project.

This article describes lessons learned in the planning, development, and administration of a collaborative military-civilian research project, the Assessment of Military Multitasking Performance, which was designed to address a gap in clinical assessment for active duty service members with mild traumatic brain injury who wish to return to active duty. Our team worked over the course of multiple years to develop an assessment for military therapists to address this need. Insights gained through trial and error are shared to provide guidance for civilian researchers who may wish to collaborate with active duty researchers.

[Application and Integration of Qualitative and Quantitative Research Methods in Intervention Studies in Rehabilitation Research]. / Anwendung und Integration qualitativer und quantitativer Forschungsmethoden in der rehabilitationswissenschaftlichen Interventionsforschung.

In order to develop and evaluate interventions in rehabilitation research a wide range of empirical research methods may be adopted. Qualitative research methods emphasize the relevance of an open research focus and a natural proximity to research objects. Accordingly, using qualitative methods special benefits may arise if researchers strive to identify and organize unknown information aspects (inductive purpose). Particularly, quantitative research methods require a high degree of standardization and transparency of the research process. Furthermore, a clear definition of efficacy and effectiveness exists (deductive purpose). These paradigmatic approaches are characterized by almost opposite key characteristics, application standards, purposes and quality criteria. Hence, specific aspects have to be regarded if researchers aim to select or combine those approaches in order to ensure an optimal gain in knowledge.

Pivoting in Context: Using the Forging Alliances in Interdisciplinary Rehabilitation Research Model to Collaborate During COVID-19.

ABSTRACT: With the onset of the COVID-19 pandemic, researchers have been faced with challenges in maintaining interdisciplinary research collaborations. The purpose of this article is to apply and expand a previously introduced model to sustaining new interdisciplinary research collaborations: Forging Alliances in Interdisciplinary Rehabilitation Research (FAIRR). FAIRR is a logic model that can be used as a guide to create interdisciplinary rehabilitation research teams. In this article, the authors propose expanding FAIRR by including strategies for sustaining interdisciplinary rehabilitation research collaborations: modifying inputs (resources needed to assemble a team and to conduct research activities), shifting activities (steps taken to move the interdisciplinary collaboration forward), and examining what impacts the fit between inputs and activities. Two examples are used to highlight the application of the FAIRR model to interdisciplinary collaborations during COVID-19.

Client and family engagement in rehabilitation research: a framework for health care organizations.

PURPOSE: To describe the development and implementation of an organizational framework for client and family-centered research. METHOD: Case report. RESULTS: While patient-centered care is now well established, patient-centered research remains underdeveloped. This is particularly true at the organizational level (e.g., hospital based research institutes). In this paper we describe the development of an organizational framework for client and family centered research at Holland Bloorview Kids Rehabilitation Hospital in Toronto, Canada. CONCLUSION: It is our hope that, by sharing our framework other research institutions can learn from our experience and develop their own research patient/client/family engagement programs. Implications for rehabilitation Family engagement in rehabilitation research •Rehabilitation research is crucial to the development and improvement of rehabilitative care. •The relevance, appropriateness, and accountability of research to patients, clients and families could be improved. •Engaging clients and families as partners in all aspects of the research process is one way to address this problem. •In this paper, we describe a framework for engaging clients and families in research at the organizational level.

Comprehensive systematic review update summary: Disorders of consciousness: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology; the American Congress of Rehabilitation Medicine; and the National Institute on Disability, Independent Living, and Rehabilitation Research.

OBJECTIVE: To update the 1995 American Academy of Neurology (AAN) practice parameter on persistent vegetative state and the 2002 case definition for the minimally conscious state (MCS) by reviewing the literature on the diagnosis, natural history, prognosis, and treatment of disorders of consciousness lasting at least 28 days. METHODS: Articles were classified per the AAN evidence-based classification system. Evidence synthesis occurred through a modified Grading of Recommendations Assessment, Development and Evaluation process. Recommendations were based on evidence, related evidence, care principles, and inferences according to the AAN 2011 process manual, as amended. RESULTS: No diagnostic assessment procedure had moderate or strong evidence for use. It is possible that a positive EMG response to command, EEG reactivity to sensory stimuli, laser-evoked potentials, and the Perturbational Complexity Index can distinguish MCS from vegetative state/unresponsive wakefulness syndrome (VS/UWS). The natural history of recovery from prolonged VS/UWS is better in traumatic than nontraumatic cases. MCS is generally associated with a better prognosis than VS (conclusions of low to moderate confidence in adult populations), and traumatic injury is generally associated with a better prognosis than nontraumatic injury (conclusions of low to moderate confidence in adult and pediatric populations). Findings concerning other prognostic features are stratified by etiology of injury (traumatic vs nontraumatic) and diagnosis (VS/UWS vs MCS) with low to moderate degrees of confidence. Therapeutic evidence is sparse. Amantadine probably hastens functional recovery in patients with MCS or VS/UWS secondary to severe traumatic brain injury over 4 weeks of treatment. Recommendations are presented separately.

Practice guideline update recommendations summary: Disorders of consciousness: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology; the American Congress of Rehabilitation Medicine; and the National Institute on Disability, Independent Living, and Rehabilitation Research.

OBJECTIVE: To update the 1995 American Academy of Neurology (AAN) practice parameter on persistent vegetative state and the 2002 case definition on minimally conscious state (MCS) and provide care recommendations for patients with prolonged disorders of consciousness (DoC). METHODS: Recommendations were based on systematic review evidence, related evidence, care principles, and inferences using a modified Delphi consensus process according to the AAN 2011 process manual, as amended. RECOMMENDATIONS: Clinicians should identify and treat confounding conditions, optimize arousal, and perform serial standardized assessments to improve diagnostic accuracy in adults and children with prolonged DoC (Level B). Clinicians should counsel families that for adults, MCS (vs vegetative state [VS]/unresponsive wakefulness syndrome [UWS]) and traumatic (vs nontraumatic) etiology are associated with more favorable outcomes (Level B). When prognosis is poor, long-term care must be discussed (Level A), acknowledging that prognosis is not universally poor (Level B). Structural MRI, SPECT, and the Coma Recovery Scale-Revised can assist prognostication in adults (Level B); no tests are shown to improve prognostic accuracy in children. Pain always should be assessed and treated (Level B) and evidence supporting treatment approaches discussed (Level B). Clinicians should prescribe amantadine (100-200 mg bid) for adults with traumatic VS/UWS or MCS (4-16 weeks post injury) to hasten functional recovery and reduce disability early in recovery (Level B). Family counseling concerning children should acknowledge that natural history of recovery, prognosis, and treatment are not established (Level B). Recent evidence indicates that the term chronic VS/UWS should replace permanent VS, with duration specified (Level B). Additional recommendations are included.

The National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System: Twenty Years of Contributions to Clinical Service and Research.

The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) established the Burn Model System (BMS) in 1993 to improve the lives of burn survivors. The BMS program includes 1) a multicenter longitudinal database describing the functional and psychosocial recovery of burn survivors; 2) site-specific burn-related research; and 3) a knowledge dissemination component directed toward patients and providers. Output from each BMS component was analyzed. Database structure, content, and access procedures are described. Publications using the database were identified and categorized to illustrate the content area of the work. Unused areas of the database were identified for future study. Publications related to site-specific projects were cataloged. The most frequently cited articles are summarized to illustrate the scope of these projects. The effectiveness of dissemination activities was measured by quantifying website hits and information downloads. There were 25 NIDILRR-supported publications that utilized the database. These articles covered topics related to psychological outcomes, functional outcomes, community reintegration, and burn demographics. There were 172 site-specific publications; highly cited articles demonstrate a wide scope of study. For information dissemination, visits to the BMS website quadrupled between 2013 and 2014, with 124,063 downloads of educational material in 2014. The NIDILRR BMS program has played a major role in defining the course of burn recovery, and making that information accessible to the general public. The accumulating information in the database serves as a rich resource to the burn community for future study. The BMS is a model for collaborative research that is multidisciplinary and outcome focused.

The Bridging Advanced Developments for Exceptional Rehabilitation (BADER) Consortium: Reaching in Partnership for Optimal Orthopaedic Rehabilitation Outcomes.

The Bridging Advanced Developments for Exceptional Rehabilitation (BADER) Consortium began in September 2011 as a cooperative agreement with the Department of Defense (DoD) Congressionally Directed Medical Research Programs Peer Reviewed Orthopaedic Research Program. A partnership was formed with DoD Military Treatment Facilities (MTFs), U.S. Department of Veterans Affairs (VA) Centers, the National Institutes of Health (NIH), academia, and industry to rapidly conduct innovative, high-impact, and sustainable clinically relevant research. The BADER Consortium has a unique research capacity-building focus that creates infrastructures and strategically connects and supports research teams to conduct multiteam research initiatives primarily led by MTF and VA investigators.BADER relies on strong partnerships with these agencies to strengthen and support orthopaedic rehabilitation research. Its focus is on the rapid forming and execution of projects focused on obtaining optimal functional outcomes for patients with limb loss and limb injuries. The Consortium is based on an NIH research capacity-building model that comprises essential research support components that are anchored by a set of BADER-funded and initiative-launching studies. Through a partnership with the DoD/VA Extremity Trauma and Amputation Center of Excellence, the BADER Consortium's research initiative-launching program has directly supported the identification and establishment of eight BADER-funded clinical studies. BADER's Clinical Research Core (CRC) staff, who are embedded within each of the MTFs, have supported an additional 37 non-BADER Consortium-funded projects. Additional key research support infrastructures that expedite the process for conducting multisite clinical trials include an omnibus Cooperative Research and Development Agreement and the NIH Clinical Trials Database. A 2015 Defense Health Board report highlighted the Consortium's vital role, stating the research capabilities of the DoD Advanced Rehabilitation Centers are significantly enhanced and facilitated by the BADER Consortium.