Establishing a National Engagement Strategy for Recruiting Asian Americans and Other Minorities into Biomedical Research.

BACKGROUND: The All of Us Research Program seeks to advance precision medicine and reduce health disparities by recruiting people in demographic categories that are underrepresented in biomedical research. Asian Americans, Native Hawaiians and Pacific Islanders are the most understudied of all racial/ethnic groups in the United States. We propose a national engagement strategy for the recruitment of Asian Americans, Native Hawaiians and Pacific Islanders into biomedical research using a community-based participatory research approach. METHODS: We partnered with Asian serving community-based organizations across the United States to increase education and awareness and developed a culturally and linguistically tailored approach for the engagement of AANHPIs into All of Us Research Program. RESULTS: In the first year, our national engagement strategy reached more than 35,000 AANHPIs through promotional events and educational sessions. CONCLUSIONS: Our success is a result of our equal and mutually beneficial partnership with community-based organizations who have access to rich, local knowledge and hold a unique role within the community.

Occupational therapy consensus recommendations for functional neurological disorder.

BACKGROUND: People with functional neurological disorder (FND) are commonly seen by occupational therapists; however, there are limited descriptions in the literature about the type of interventions that are likely to be helpful. This document aims to address this issue by providing consensus recommendations for occupational therapy assessment and intervention. METHODS: The recommendations were developed in four stages. Stage 1: an invitation was sent to occupational therapists with expertise in FND in different countries to complete two surveys exploring their opinions regarding best practice for assessment and interventions for FND. Stage 2: a face-to-face meeting of multidisciplinary clinical experts in FND discussed and debated the data from stage 1, aiming to achieve consensus on each issue. Stage 3: recommendations based on the meeting were drafted. Stage 4: successive drafts of recommendations were circulated among the multidisciplinary group until consensus was achieved. RESULTS: We recommend that occupational therapy treatment for FND is based on a biopsychosocial aetiological framework. Education, rehabilitation within functional activity and the use of taught self-management strategies are central to occupational therapy intervention for FND. Several aspects of occupational therapy for FND are distinct from therapy for other neurological conditions. Examples to illustrate the recommendations are included within this document. CONCLUSIONS: Occupational therapists have an integral role in the multidisciplinary management of people with FND. This document forms a starting point for research aiming to develop evidence-based occupational therapy interventions for people with FND.

The sink or SWIM hypothesis; a roadmap from pathology to work instability.

PURPOSE: Selecting the most appropriate health-related work outcome to evaluate an intervention can be fraught with difficulty. To aid clinicians in navigating this problem we have developed a model, which illustrates how pathology can affect specific measureable quantities, such as work instability. METHODS: Using a modified-Delphi procedure, a panel of experts met initially to analyze the content of 95 health-related work outcome measures and organize the identified areas of measurement into a coherent model, complemented by a narrative review of the literature. This initial model underwent two rounds of stakeholder-based feedback, the results of which were incorporated in the final expert panel meeting to produce the States-traits Work Instability Model (SWIM). RESULTS: The States-traits Work Instability Model (SWIM) illustrates how changes to an individual's physical and psychological states and traits might affect their work-related performance, well-being and self-efficacy. Moreover, each concept utilized in the model was specifically selected as it represents a measurable quantity, for which there are tools available. CONCLUSION: The SWIM is arguably the first holistic model of work that is based on both the clinical realities of vocational rehabilitation, sociological research, and is born from analyzing the basis of practical measurements. Implications for Rehabilitation Work Instability • Work instability has multiple causes many of which are amenable to intervention • The model clarifies the measureable domains of vocational rehabilitation interventions, which is of particular benefit for services working with people with disability at work who are struggling to remain in work • The model conceptualizes how the potential areas for intervention may be related based on evidence available in the literature.

Systematic Review of Health-Related Work Outcome Measures and Quality Criteria-Based Evaluations of Their Psychometric Properties.

OBJECTIVE: To examine the state of psychometric validation in the health-related work outcome literature. DATA SOURCES: We searched PubMed, PubMed Central, CINAHL, Embase (plus Embase Classic), and PsycINFO from inception to January 2016 using the following search terms: stroke, multiple sclerosis, epilepsy, spinal cord injury, brain injury, musculoskeletal disease, work, absenteeism, presenteeism, occupation, employment, job, outcome measure, assessment, work capacity evaluation, scale, and questionnaire. STUDY SELECTION: From the 22,676 retrieved abstracts, 597 outcome measures were identified. Inclusion was based on content analysis. There were 95 health-related work outcome measures retained; of these, 2 were treated as outliers and therefore are discussed separately. All 6 authors individually organized the 93 remaining scales based on their content. DATA EXTRACTION: A follow-up search using the same sources, and time period, with the name of the outcome measures and the terms psychometric, reliability, validity, and responsiveness, identified 263 unique classical test theory psychometric property datasets for the 93 tools. An assessment criterion for psychometric properties was applied to each article, and where consensus was not achieved, the rating delivered by most of the assessors was reported. DATA SYNTHESIS: Of the articles reported, 18 reporting psychometric data were not accessible and therefore could not be assessed. There were 39 that scored <20% of the maximum achievable score, 106 scored between 20% and 40%, 82 scored between 40% and 60%, 15 scored between 60% and 80%, and only 1 scored >80%. The 3 outcome measures associated with the highest scoring datasets were the Sheehan Disability Scale, the Fear Avoidance Beliefs Questionnaire, and the assessment of the Subjective Handicap of Epilepsy. Finally, only 2 psychometric validation datasets reported the complete set of baseline psychometric properties. CONCLUSIONS: This systematic review highlights the current limitations of the health-related work outcome measure literature, including the limited number of robust tools available.

Skeletal complications and survival in renal cancer patients with bone metastases.

Skeletal metastases occur in around one third of patients with advanced or metastatic renal cell carcinoma (RCC). Skeletal involvement is commonly an aggressive, lytic process which causes substantial morbidity through skeletal complications and occurrence of skeletal related events (SREs). However, compared with bone metastases in breast and prostate cancer, there is a paucity of data relating to the demographics of bone metastases in RCC and their sequelae in terms of SREs and survival. The study population included all patients (N=803) with advanced or metastatic RCC treated in a tertiary centre serving a regional population of 2.6 million between 1998 and 2007. Demographic and survival data and information relating to metastatic disease were extracted from electronic records. Thirty-two percent (N=254) of the study population presented with (N=131) or later developed (N=123) bone metastases and 83% of these (N=210) also developed metastases elsewhere. The mean number of SREs experienced by the bone metastatic patients over the course of their disease was 2.4 and only 37 patients experienced no SRE. A high proportion of patients (80%) received radiotherapy for bone pain and there was a surprising and strikingly high incidence of spinal cord/nerve root compression, which was experienced by 28% patients. Although bisphosphonate use increased following the availability of zoledronic acid in 2004, approximately 50% patients with bone metastases did not receive bisphosphonate treatment. The skeletal morbidity rate (number of SREs per patient years at risk) was 1.0 and 1.4 for patients who received or did not receive bisphosphonates, respectively. The median survival following diagnosis of RCC was similar in patients who developed bone metastases (20.4 months) and those who did not (20.9 months). Median survival from diagnosis of metastases was 13.3 months for those who never developed bone metastases, 10.6 months for those who presented with them, 19.6 months for those who developed them later and 22.6 months for patients who had bone only metastases. This is the largest study to date focusing specifically on skeletal complications in RCC. A striking finding was the high incidence of spinal cord/nerve root compression and more research into this area is needed. Clearer, internationally accepted guidelines are recommended for the management of this patient group.