A roadmap to reduce information inequities in disability with digital health and natural language processing.

People with disabilities disproportionately experience negative health outcomes. Purposeful analysis of information on all aspects of the experience of disability across individuals and populations can guide interventions to reduce health inequities in care and outcomes. Such an analysis requires more holistic information on individual function, precursors and predictors, and environmental and personal factors than is systematically collected in current practice. We identify 3 key information barriers to more equitable information: (1) a lack of information on contextual factors that affect a person's experience of function; (2) underemphasis of the patient's voice, perspective, and goals in the electronic health record; and (3) a lack of standardized locations in the electronic health record to record observations of function and context. Through analysis of rehabilitation data, we have identified ways to mitigate these barriers through the development of digital health technologies to better capture and analyze information about the experience of function. We propose 3 directions for future research on using digital health technologies, particularly natural language processing (NLP), to facilitate capturing a more holistic picture of a patient's unique experience: (1) analyzing existing information on function in free text documentation; (2) developing new NLP-driven methods to collect information on contextual factors; and (3) collecting and analyzing patient-reported descriptions of personal perceptions and goals. Multidisciplinary collaboration between rehabilitation experts and data scientists to advance these research directions will yield practical technologies to help reduce inequities and improve care for all populations.

Neurogenic bowel treatments and continence outcomes in children and adults with myelomeningocele.

PURPOSE: Neurogenic bowel dysfunction (NBD) is a common comorbidity of myelomeningocele (MMC), the most common and severe form of spina bifida. The National Spina Bifida Patient Registry (NSBPR) is a research collaboration between the CDC and Spina Bifida Clinics. Fecal continence (continence) outcomes for common treatment modalities for NBD have not been described in a large sample of individuals with MMC. NSBPR patients with MMC and NBD were studied to determine variation in continence status and their ability to perform their treatment independently according to treatment modality and individual characteristics. METHODS: Continence was defined as < 1 episode of incontinence per month. Eleven common treatments were evaluated. Inclusion criteria were established diagnoses of both MMC and NBD, as well as age ⩾ 5 years (n= 3670). Chi-square or exact statistical tests were used for bivariate analyses. Logistic regression models were used to estimate the odds of continence outcomes by age, sex, race/ethnicity, level of motor function, and insurance status. RESULTS: At total of 3670 members of the NSBPR met inclusion criteria between November 2013 and December 2017. Overall prevalence of continence was 45%. Prevalence ranged from 40-69% across different treatments. Among continent individuals, 60% achieved continence without surgery. Antegrade enemas were the most commonly used treatment and had the highest associated continence rate. Ability to carry out a treatment independently increased with age. Multivariable logistic regression showed significantly higher odds of continence among individuals aged ⩾ 12 years, female, non-Hispanic white, and with private insurance.

Model-Based Dynamic Control Allocation in a Hybrid Neuroprosthesis.

A hybrid neuroprosthesis that combines human muscle power, elicited through functional electrical stimulation (FES), with a powered orthosis may be advantageous over a sole FES or a powered exoskeleton-based rehabilitation system. The hybrid system can conceivably overcome torque reduction due to FES-induced muscle fatigue by complementarily using torque from the powered exoskeleton. The second advantage of the hybrid system is that the use of human muscle power can supplement the powered exoskeleton's power (motor torque) requirements; thus, potentially reducing the size and weight of a walking restoration system. To realize these advantages, however, it is unknown how to concurrently optimize desired control performance and allocation of control inputs between FES and electric motor. In this paper, a model predictive control-based dynamic control allocation (DCA) is used to allocate control between FES and the electric motor that simultaneously maintain a desired knee angle. The experimental results, depicting the performance of the DCA method while the muscle fatigues, are presented for an able-bodied participant and a participant with spinal cord injury. The experimental results showed that the motor torque recruited by the hybrid system was less than that recruited by the motor-only system, the algorithm can be easily used to allocate more control input to the electric motor as the muscle fatigues, and the muscle fatigue induced by the hybrid system was found to be less than the fatigue induced by sole FES. These results validate the aforementioned advantages of the hybrid system; thus implying the hybrid technology's potential use in walking rehabilitation.

Research Needs for Effective Transition in Lifelong Care of Congenital Genitourinary Conditions: A Workshop Sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases.

Over the last 5 decades, health-care advances have yielded quantum improvements in the life expectancy of individuals with congenital genitourinary conditions (CGCs), leading to a crisis of care. Many individuals with CGC enter adulthood unprepared to manage their condition. Pediatric CGC specialists lack training to manage adulthood-related health-care issues, whereas adult genitourinary specialists lack training within the context of CGCs. To address these challenges, the National Institutes of Diabetes and Digestive and Kidney Diseases convened individuals with CGCs and experts from a variety of fields to identify research needs to improve transitional urology care. This paper outlines identified research needs.

Effectiveness of a Wellness Program for Individuals With Spina Bifida and Spinal Cord Injury Within an Integrated Delivery System.

OBJECTIVE: To determine whether an evidence-based wellness program for individuals with spina bifida and spinal cord injury would improve health outcomes and patient experience of care, result in a positive return on investment (ROI), and provide evidence for scalability. DESIGN: Nonrandomized, noncontrolled cohort study; 2 years of enrollment. SETTING: Academic hospital-based outpatient physiatry clinic partnered with an insurance division within an integrated health care delivery and financing system. PARTICIPANTS: Individuals (N=69) with spina bifida and spinal cord injury were consented; 4 were excluded (5.7%), and the remaining 65 (94.2%) participated in the intervention. INTERVENTIONS: Evidence-based wellness program consisting of care coordination from a mobile nurse, patient education, and patient incentives. MAIN OUTCOME MEASURES: Validated measures of function, mood, quality of life, and perception of care delivery; knowledge of preventable conditions; self-rating of health; and utilization and cost. RESULTS: Improvements in all main outcome measures were seen after 2 years of enrollment. Although cost in year 1 of enrollment increased because of hospitalizations and the overall ROI was negative, a small positive ROI was seen in year 2 of enrollment. CONCLUSIONS: Participation in an evidence-based wellness program was associated with improved health and experience of care. Scaling the program to larger numbers may result in an overall positive ROI.

Processes and Outcomes from a Medical Student Research Training Program in Integrative, Complementary, and Alternative Medicine.

In response to the growing need to train a new generation of clinician scientists, a research program was developed to train medical students in integrative, complementary, and alternative medicine (ICAM) research early in their careers. A total of 25 students (100%) successfully completed a 10-week program. Students reported significantly increased levels of knowledge in all 7 integrative, complementary, and alternative medicine topics at the conclusion of the program. All students presented their work at one or more local research symposia. In addition, the average number of quality research outputs, which included manuscripts, awards, and abstracts presented at national and international meetings, was 1.5 per student, which exceeded benchmarks based on prior program outcomes. Results from this program may be useful when planning larger or longer-term projects aimed at attracting physicians who will become our next generation of academicians, researchers, and healers.