Simplification of Mobility Tests and Data Processing to Increase Applicability of Wearable Sensors as Diagnostic Tools for Parkinson's Disease.

Quantitative mobility analysis using wearable sensors, while promising as a diagnostic tool for Parkinson's disease (PD), is not commonly applied in clinical settings. Major obstacles include uncertainty regarding the best protocol for instrumented mobility testing and subsequent data processing, as well as the added workload and complexity of this multi-step process. To simplify sensor-based mobility testing in diagnosing PD, we analyzed data from 262 PD participants and 50 controls performing several motor tasks wearing a sensor on their lower back containing a triaxial accelerometer and a triaxial gyroscope. Using ensembles of heterogeneous machine learning models incorporating a range of classifiers trained on a set of sensor features, we show that our models effectively differentiate between participants with PD and controls, both for mixed-stage PD (92.6% accuracy) and a group selected for mild PD only (89.4% accuracy). Omitting algorithmic segmentation of complex mobility tasks decreased the diagnostic accuracy of our models, as did the inclusion of kinesiological features. Feature importance analysis revealed that Timed Up and Go (TUG) tasks to contribute the highest-yield predictive features, with only minor decreases in accuracy for models based on cognitive TUG as a single mobility task. Our machine learning approach facilitates major simplification of instrumented mobility testing without compromising predictive performance.

Diagnosis of Autism in School Age and Adolescence in an Ethnically Diverse Population.

Despite policy emphasis on early identification, many children with Autism are diagnosed late, with some being diagnosed as late as adolescence. The objective of this study was to examine the demographics and clinical characteristics of school-age children and adolescents initially diagnosed with Autism age 7 and older, in an urban, university-affiliated multidisciplinary center that evaluates/treats youth with developmental disabilities. A chart review of all school-age children and adolescents referred for evaluation to determine if the child has developmental disabilities from January 2019 to May 2023 was performed. Of all children evaluated in that period (n = 825), 164 (19.8%) were diagnosed with Autism, 123 (75%) had a previous diagnosis, and 41 (25%) were newly diagnosed with Autism. Patients newly diagnosed with Autism age ≥7 were more likely to be diagnosed with Language Disorder (100% vs. 82%, p = 0.001) and Anxiety Disorder (27% vs. 13%, p = 0.04), be prescribed with an antidepressant (10% vs. 1%, p = 0.03), and less likely to be diagnosed with Intellectual Disabilities (13% vs. 34%, p = 0.001) than those who had a previous diagnosis of Autism, with no other differences in demographics or developmental diagnosis between the groups. Of the 136 patients referred for evaluation with a previous diagnosis of Autism, 13 (9.5%) did not meet the criteria for Autism any longer after multidisciplinary evaluations but continued to present developmental disorders, including Language Disorder (100%), attention-deficit/hyperactivity disorder (46%), and Speech Sound Disorder (38%). Of the 87 families who were concerned about Autism (without a previous diagnosis), 32 (36.8%) confirmed the diagnosis of Autism, 9 (1.5%) patients were newly diagnosed with Autism, and there were no parental concerns. In conclusion, in this ethnically diverse group of school-age children and adolescents with developmental disabilities, 25% received an initial diagnosis of Autism after age 7. Similar to previous reports, children who received a later diagnosis were more likely to present a language impairment, anxiety, and higher cognitive skills. Longitudinal studies, in ethnically diverse populations, are necessary to understand the trajectory and clinical profile of Autism.

Reducing Firearm Access for Suicide Prevention: Implementation Evaluation of the Web-Based "Lock to Live" Decision Aid in Routine Health Care Encounters.

Background: "Lock to Live" (L2L) is a novel web-based decision aid for helping people at risk of suicide reduce access to firearms. Researchers have demonstrated that L2L is feasible to use and acceptable to patients, but little is known about how to implement L2L during web-based mental health care and in-person contact with clinicians. Objective: The goal of this project was to support the implementation and evaluation of L2L during routine primary care and mental health specialty web-based and in-person encounters. Methods: The L2L implementation and evaluation took place at Kaiser Permanente Washington (KPWA)-a large, regional, nonprofit health care system. Three dimensions from the RE-AIM (Reach, Effectiveness, Adoption, Implementation, Maintenance) model-Reach, Adoption, and Implementation-were selected to inform and evaluate the implementation of L2L at KPWA (January 1, 2020, to December 31, 2021). Electronic health record (EHR) data were used to purposefully recruit adult patients, including firearm owners and patients reporting suicidality, to participate in semistructured interviews. Interview themes were used to facilitate L2L implementation and inform subsequent semistructured interviews with clinicians responsible for suicide risk mitigation. Audio-recorded interviews were conducted via the web, transcribed, and coded, using a rapid qualitative inquiry approach. A descriptive analysis of EHR data was performed to summarize L2L reach and adoption among patients identified at high risk of suicide. Results: The initial implementation consisted of updates for clinicians to add a URL and QR code referencing L2L to the safety planning EHR templates. Recommendations about introducing L2L were subsequently derived from the thematic analysis of semistructured interviews with patients (n=36), which included (1) "have an open conversation," (2) "validate their situation," (3) "share what to expect," (4) "make it accessible and memorable," and (5) "walk through the tool." Clinicians' interviews (n=30) showed a strong preference to have L2L included by default in the EHR-based safety planning template (in contrast to adding it manually). During the 2-year observation period, 2739 patients reported prior-month suicide attempt planning or intent and had a documented safety plan during the study period, including 745 (27.2%) who also received L2L. Over four 6-month subperiods of the observation period, L2L adoption rates increased substantially from 2% to 29% among primary care clinicians and from <1% to 48% among mental health clinicians. Conclusions: Understanding the value of L2L from users' perspectives was essential for facilitating implementation and increasing patient reach and clinician adoption. Incorporating L2L into the existing system-level, EHR-based safety plan template reduced the effort to use L2L and was likely the most impactful implementation strategy. As rising suicide rates galvanize the urgency of prevention, the findings from this project, including L2L implementation tools and strategies, will support efforts to promote safety for suicide prevention in health care nationwide.

The effects of medical comorbidity, cognition, and age on patient-reported outcomes in Parkinson's disease.

OBJECTIVE: The purpose of this cross-sectional study was to compare the independent contributions of medical comorbidity, cognition, and age on patient-reported outcomes in Parkinson's disease (PD). METHODS: 572 PD patients completed the Patient-Reported Outcome Measurement Information System (PROMIS®)-29 v2.0 Profile (physical function, anxiety, depression, fatigue, sleep disturbance, satisfaction with participation in social roles, pain interference) and PROMIS Global Health (mental health and physical health) scales. Comorbidity was measured with the Cumulative Illness Rating Scale-Geriatric (CIRS-G) and cognition with the Montreal Cognitive Assessment (MoCA). Multiple regression models examined the 9 PROMIS measures as predicted by comorbidity, cognition, and age, adjusting for demographic and clinical characteristics (UPDRS and disease duration). RESULTS: Comorbidity was associated with poorer outcomes in all nine PROMIS domains. Cognition was associated with two of nine domains: physical function and anxiety. Age was associated with five domains: anxiety, depression, sleep disturbance, satisfaction with participation in social roles, and global mental health. Comorbidity showed greater effects on all nine domains than cognition or age (higher standardized beta coefficients). CONCLUSION: Medical comorbidity, cognition, and age have different impacts on patient-reported outcomes in PD. Medical comorbidity has a greater impact than either cognition or age on a range of patient-reported physical and mental health domains. Medical comorbidity is an important contributor to the patient's perspective of their physical and mental health.

Spirituality in Parkinson's Disease within a Sample from the USA.

Spirituality and religious beliefs are important for coping with medical conditions. The dopaminergic system is involved in reward behavior, and its dysfunction in Parkinson Disease (PD) raises questions about religiosity and spirituality in people with PD. This study examines the association between levels of spirituality and religiosity and the severity of PD motor and non-motor symptoms. The secondary aim investigates the perceived impact of PD diagnosis on spirituality and religiosity. This was a cross-sectional analysis of demographic, physical, mental, and spirituality and religiosity status in patients with PD recruited for the Health Outcomes Measurement (HOME) Study at the University of Maryland Parkinson Disease and Movement Disorders Center, Baltimore, USA. Spirituality and religiosity were assessed using the Spiritual Well-being Scale, and the World Health Organization Quality of Life Spiritual Religious and Personal Belief field-test instrument. The sample size was 85 PD patients. The mean age (standard deviation) was 65.5 (9.4) years and 67.1% were male. Higher levels of spirituality and religiosity were associated with younger age, sex (female), less education, religious affiliation (Christian), and mental health status. After adjusting for age, education, gender, race, marital status, religion, physical health, mental health, and comorbidity, only anxiety was associated with all of the spirituality/religiosity assessments. The majority of patients reported no change in their religious or spiritual beliefs following diagnosis. Greater spirituality and religiosity were associated with less anxiety. Also, younger women with PD showed higher levels of spirituality and religiosity. Longitudinal studies on more diverse populations are needed.

Agreement of parent-reported cognitive level with standardized measures among children with autism spectrum disorder.

Assessing cognitive development is critical in clinical research of autism spectrum disorder (ASD). However, collecting cognitive data from clinically administered assessments can add a significant burden to clinical research in ASD due to the substantial cost and time required, and it is often prohibitive in large-scale studies. There is a need for more efficient, but reliable, methods to estimate cognitive functioning for researchers, clinicians, and families. To examine the degree to which caregiver estimates of cognitive level agree with actual measured intelligence/developmental scores and understand factors that may impact that agreement, 1,555 autistic individuals (81.74% male; age 18 months-18 years) were selected from a large cohort (Simons Foundation Powering Autism Research for Knowledge, SPARK). Results suggest that querying parents about recent testing results and developmental diagnoses can provide valid and useful information on cognitive ability. The agreement of parental estimates varied with age, measured cognitive ability, autistic traits, and adaptive skills. In the context of large-scale research efforts, parent-reported cognitive impairment may be a good proxy for categorical IQ range for survey-based studies when specific IQ scores are not available, circumventing the logistical and financial obstacles of obtaining neuropsychological or neurodevelopmental testing.

The TeleKidSeq pilot study: incorporating telehealth into clinical care of children from diverse backgrounds undergoing whole genome sequencing.

BACKGROUND: The COVID-19 pandemic forced healthcare institutions and many clinical research programs to adopt telehealth modalities in order to mitigate viral spread. With the expanded use of telehealth, there is the potential to increase access to genomic medicine to medically underserved populations, yet little is known about how best to communicate genomic results via telehealth while also ensuring equitable access. NYCKidSeq, a multi-institutional clinical genomics research program in New York City, launched the TeleKidSeq pilot study to assess alternative forms of genomic communication and telehealth service delivery models with families from medically underserved populations. METHODS: We aim to enroll 496 participants between 0 and 21 years old to receive clinical genome sequencing. These individuals have a neurologic, cardiovascular, and/or immunologic disease. Participants will be English- or Spanish-speaking and predominantly from underrepresented groups who receive care in the New York metropolitan area. Prior to enrollment, participants will be randomized to either genetic counseling via videoconferencing with screen-sharing or genetic counseling via videoconferencing without screen-sharing. Using surveys administered at baseline, results disclosure, and 6-months post-results disclosure, we will evaluate the impact of the use of screen-sharing on participant understanding, satisfaction, and uptake of medical recommendations, as well as the psychological and socioeconomic implications of obtaining genome sequencing. Clinical utility, cost, and diagnostic yield of genome sequencing will also be assessed. DISCUSSION: The TeleKidSeq pilot study will contribute to innovations in communicating genomic test results to diverse populations through telehealth technology. In conjunction with NYCKidSeq, this work will inform best practices for the implementation of genomic medicine in diverse, English- and Spanish-speaking populations.

Implementation of Suicide Risk Estimation Analytics to Support Mental Health Care for Quality Improvement.

This quality improvement study describes use of estimation analytics to augment existing suicide prevention practices during routine mental health specialty encounters at a large US health care system.

Patient and Clinician Perspectives of a Standardized Question About Firearm Access to Support Suicide Prevention: A Qualitative Study.

Importance: US residents report broad access to firearms, which are the most common means of suicide death in the US. Standardized firearm access questions during routine health care encounters are uncommon despite potential benefits for suicide prevention. Objective: To explore patient and clinician experiences with a standard question about firearm access on a self-administered mental health questionnaire routinely used prior to primary care and mental health specialty encounters. Design, Setting, and Participants: Qualitative semistructured interviews were conducted from November 18, 2019, to October 8, 2020, at Kaiser Permanente Washington, a large integrated care delivery system and insurance provider. Electronic health record data identified adult patients with a documented mental health diagnosis who had received a standard question about firearm access ("Do you have access to guns? yes/no") within the prior 2 weeks. A stratified sampling distribution selected 30% who answered "yes," 30% who answered "no," and 40% who left the question blank. Two groups of clinicians responsible for safety planning with patients at risk of suicide were also sampled: (1) licensed clinical social workers (LICSWs) in primary and urgent care settings and (2) consulting nurses (RNs). Main Outcomes and Measures: Participants completed semistructured telephone interviews, which were recorded and transcribed. Directive (deductive) and conventional (inductive) content analyses were used to apply knowledge from prior research and describe new information. Thematic analysis was used to organize key content, and triangulation was used to describe the intersections between patient and clinician perspectives. Results: Thirty-six patients were interviewed (of 76 sampled; mean [SD] age, 47.3 [17.9] years; 19 [53%] were male; 27 [75%] were White; 3 [8%] were Black; and 1 [3%] was Latinx or Hispanic. Sixteen participants had reported firearm access and 15 had reported thoughts of self-harm on the questionnaire used for sampling. Thirty clinicians were interviewed (of 51 sampled) (mean [SD] age, 44.3 [12.1] years; 24 [80%] were female; 18 [60%] were White; 5 [17%] were Asian or Pacific Islander; and 4 [13%] were Latinx or Hispanic) including 25 LICSWs and 5 RNs. Key organizing themes included perceived value of standardized questions about firearm access, challenges of asking and answering, and considerations for practice improvement. Clinician interview themes largely converged and/or complemented patient interviews. Conclusions and Relevance: In this qualitative study using semistructured interviews with patients and clinicians, a standardized question about firearm access was found to encourage dialogue about firearm access. Respondents underscored the importance of nonjudgmental acknowledgment of patients' reasons for firearm access as key to patient-centered practice improvement.

Somatoform Symptoms in Parkinson Disease.

BACKGROUND: Co-occurring somatoform symptoms complicate the diagnosis and treatment of Parkinson disease (PD). OBJECTIVE: To learn more about the relationship between somatoform symptoms and PD by comparing demographic and clinical features across PD groups differing in somatoform symptom severity. METHOD: Using standardized Brief Symptom Inventory-18 (BSI-18) scores to measure somatoform symptom severity, we assigned 1093 individuals with PD to one of four subgroups using comparisons to normative means: low (M < -½ SD), average (M ± ½ SD), high (M +½ SD to +1 SD), very high (M > +1 SD). We used demographics and disease severity measures to assess each subgroup. RESULTS: Most of the individuals with PD (56%) had high or very high somatoform symptom levels. Increased somatoform symptom levels were associated with female gender, lower socioeconomic status, greater disease duration, increased PD severity (Total Unified Parkinson's Disease Rating Scale), greater disability (Older Americans Resource and Services Disability subscale), increased BSI-18 Depression and Anxiety subscale scores, lower cognitive function (Mini-Mental State Examination), lower self-efficacy scores (Self-Efficacy to Manage Chronic Disease Scale), lower quality of life scores (SF-12 Health Status Survey), and greater medical comorbidity (Cumulative Illness Rating Scale-Geriatrics) (all comparisons: P < 0.001). We found no significant between-group differences for age, race, or marital status. CONCLUSION: Somatoform symptom severity in individuals with PD is associated with greater PD severity and disability and is more common in females and in individuals with low socioeconomic status. Greater awareness of somatoform symptoms should help improve PD treatment.

What Do Adolescents and Their Parents Need From Mental Health Integration in Primary Care? A Qualitative Exploration of Design Insights.

INTRODUCTION: The design of integrated adolescent mental health care should address needs and preferences of patients and parents/guardians. METHOD: We conducted interviews and focus groups with adolescents aged 13-17 years who received care at Kaiser Permanente Washington in 2020 and interviews with parents of such adolescents. We sought to (1) understand the challenges of primary care-based mental health and substance use screening and care for adolescents and (2) identify program design solutions. Sessions were audio-recorded, transcribed, and coded. Thematic analysis was applied to identify key challenges and design solutions. RESULTS: Emerging themes from interviews (n = 41) and focus groups (n = 10) were summarized in five overarching design principles: Engagement, Privacy, Communication, Choice, and Ease. Each design principle was expanded for operationalization within a new health system program. DISCUSSION: Health systems serving adolescents in primary care may consider application of these design principles to the development of mental health integration programs.

Genome Sequencing in the Parkinson Disease Clinic.

Background and Objectives: Genetic variants affect both Parkinson disease (PD) risk and manifestations. Although genetic information is of potential interest to patients and clinicians, genetic testing is rarely performed during routine PD clinical care. The goal of this study was to examine interest in comprehensive genetic testing among patients with PD and document reactions to possible findings from genome sequencing in 2 academic movement disorder clinics. Methods: In 203 subjects with PD (age = 63 years, 67% male), genome sequencing was performed and filtered using a custom panel, including 49 genes associated with PD, parkinsonism, or related disorders, as well as a 90-variant PD genetic risk score. Based on the results, 231 patients (age = 67 years, 63% male) were surveyed on interest in genetic testing and responses to vignettes covering (1) familial risk of PD (LRRK2); (2) risk of PD dementia (GBA); (3) PD genetic risk score; and (4) secondary, medically actionable variants (BRCA1). Results: Genome sequencing revealed a LRRK2 variant in 3% and a GBA risk variant in 10% of our clinical sample. The genetic risk score was normally distributed, identifying 41 subjects with a high risk of PD. Medically actionable findings were discovered in 2 subjects (1%). In our survey, the majority (82%) responded that they would share a LRRK2 variant with relatives. Most registered unchanged or increased interest in testing when confronted with a potential risk for dementia or medically actionable findings, and most (75%) expressed interest in learning their PD genetic risk score. Discussion: Our results highlight broad interest in comprehensive genetic testing among patients with PD and may facilitate integration of genome sequencing in clinical practice.

Confirming Parkinson Disease Diagnosis: Patterns of Diagnostic Changes by Movement Disorder Specialists.

Background: The American Academy of Neurology Parkinson Disease (PD) quality measures include an annual diagnostic review. Objective: To investigate the frequency and pattern of changes in diagnoses between PD and other causes of parkinsonism. Methods: This prospective longitudinal cohort study included consented patients diagnosed with PD at least once and a minimum of two times at the Movement Disorders Center between 2002 and 2017. Movement disorder specialists confirmed and documented diagnoses at every visit. Longitudinal changes in diagnoses were identified across visits. Results: Of 1567 patients with parkinsonism, 174 had non-PD parkinsonism with no change over time. Of 1393 patients diagnosed with PD at least once, 94% (N = 1308) had no change of diagnosis over time and 6% (N = 85) had a change of diagnosis including PD ⟷ drug-induced parkinsonism (DIP) (27.1%), PD ⟷ multiple system atrophy (MSA) (20.0%), PD ⟷ progressive supranuclear palsy (PSP) (18.8%), PD ⟷ Lewy body dementia (DLB) (16.5%), PD⟷ vascular parkinsonism (9.4%), more than two diagnoses (4.7%), and PD ⟷ corticobasal syndrome (CBS) (3.5%). The direction of diagnostic switches was as follows: PD ⟶ other parkinsonism diseases (36.5%), other parkinsonism diseases ⟶ PD (31.8%), and 31.8% of multiple switches. There were no significant differences in duration of follow-up, age at first visit, gender, race, marital status, education, income, cognition, or employment between the stable and unstable groups. Diagnostic change was associated with greater PD severity and greater medical comorbidity. Conclusion: Over a 15-year period, movement disorder specialists changed their clinical diagnosis of PD in 6% of patients. The most common diagnostic switches, to or from PD, were DIP, MSA, PSP, and DLB. This study describes routine clinical diagnostic patterns in the absence of pathologic confirmation. The presence of diverse diagnostic changes over time underscores the value of confirming PD diagnosis.

The Cancer Financial Experience (CAFÉ) study: randomized controlled trial of a financial navigation intervention to address cancer-related financial hardship.

BACKGROUND: There is an urgent need for evidence on how interventions can prevent or mitigate cancer-related financial hardship. Our objectives are to compare self-reported financial hardship, quality of life, and health services use between patients receiving a financial navigation intervention versus a comparison group at 12 months follow-up, and to assess patient-level factors associated with dose received of a financial navigation intervention. METHODS: The Cancer Financial Experience (CAFÉ) study is a multi-site randomized controlled trial (RCT) with individual-level randomization. Participants will be offered either brief (one financial navigation cycle, Arm 2) or extended (three financial navigation cycles, Arm 3) financial navigation. The intervention period for both Arms 2 and 3 is 6 months. The comparison group (Arm 1) will receive enhanced usual care. The setting for the CAFÉ study is the medical oncology and radiation oncology clinics at two integrated health systems in the Pacific Northwest. Inclusion criteria includes age 18 or older with a recent cancer diagnosis and visit to a study clinic as identified through administrative data. Outcomes will be assessed at 12-month follow-up. Primary outcomes are self-reported financial distress and health-related quality of life. Secondary outcomes are delayed or foregone care; receipt of medical financial assistance; and account delinquency. A mixed methods exploratory analysis will investigate factors associated with total intervention dose received. DISCUSSION: The CAFÉ study will provide much-needed early trial evidence on the impact of financial navigation in reducing cancer-related financial hardship. It is theory-informed, clinic-based, aligned with patient preferences, and has been developed following preliminary qualitative studies and stakeholder input. By design, it will provide prospective evidence on the potential benefits of financial navigation on patient-relevant cancer outcomes. The CAFÉ trial's strengths include its broad inclusion criteria, its equity-focused sampling plan, its novel intervention developed in partnership with clinical and operations stakeholders, and mixed methods secondary analyses related to intervention dose offered and dose received. The resulting analytic dataset will allow for rich mixed methods analysis and provide critical information related to implementation of the intervention should it prove effective. TRIAL REGISTRATION: ClinicalTrials.gov NCT05018000 . August 23, 2021.

Intra-topic latency as an automated behavioral marker of treatment response in autism spectrum disorder.

Data science advances in behavioral signal processing and machine learning hold the promise to automatically quantify clinically meaningful behaviors that can be applied to a large amount of data. The objective of this study was to identify an automated behavioral marker of treatment response in social communication in children with autism spectrum disorder (ASD). First, using an automated computational method, we successfully derived the amount of time it took for a child with ASD and an adult social partner (N pairs = 210) to respond to each other while they were engaged in conversation bits ("latency") using recordings of brief, natural social interactions. Then, we measured changes in latency at pre- and post-interventions. Children with ASD who were receiving interventions showed significantly larger reduction in latency compared to those who were not receiving interventions. There was also a significant group difference in the changes in latency for adult social partners. Results suggest that the automated measure of latency derived from natural social interactions is a scalable and objective method to quantify treatment response in children with ASD.

The economic burden of Parkinson disease among Medicare beneficiaries.

BACKGROUND: The progressive nature of Parkinson disease (PD), together with a lack of curative treatments, contributes to its economic burden. OBJECTIVE: To estimate the longitudinal incremental costs attributable to PD among Medicare beneficiaries. METHODS: In this retrospective cohort study, we used data from the Chronic Conditions Data Warehouse to identify Medicare beneficiaries with and without PD-related claims identified from 2006 to 2014 with follow-up until 2015. We grouped PD cases and controls based on their survival profiles using a grouping algorithm that used the following baseline measures: age, race, sex, and comorbidity. We identified 3 survival groups and used them to stratify the descriptive annual cost estimates in the 9 years after the index date. We estimated the incremental 1-, 3-, and 5-year costs of PD using generalized linear models (GLM) that controlled for baseline factors. RESULTS: We identified 27,394 cases and controls who were grouped into 3 survival groups. The mean age of the full study sample was 73 years. No material differences were found in the incremental cost of PD across the survival groups. Based on the multivariable GLM, the 1-year incremental cost of PD was $9,625 (95% CI, $9,054-$10,197). The 3-year incremental cost of PD was $20,832 (95% CI, $19,390-$22,274). The 5-year incremental cost of PD was $27,466 (95% CI, 25,088-$29,844). CONCLUSIONS: Among Medicare beneficiaries, PD is associated with excess costs compared with controls. We did not identify substantial differences in the incremental cost of PD across the survival groups. DISCLOSURES:This study was funded by Pfizer Inc. The funding agreement did not impact the authors' independence in designing the study, collecting the data, interpreting the data, writing the manuscript, and submitting the manuscript for publication. Dr Onukwugha reports grants from Pfizer Inc for the conduct of this study and is an employee of University of Maryland, Baltimore, which received financial support from Pfizer Inc in connection with the development of this manuscript; Dr Shulman reports research funding from Pfizer Inc related to the current work, is an employee of University of Maryland, Baltimore, which received financial support from Pfizer Inc in connection with the development of this manuscript, and reports research funding from the NIH, The Rosalyn Newman Foundation, and the Eugenia and Michael Brin family unrelated to the current work and royalties from Oxford University Press and Johns Hopkins University Press; Ms Myers and Dr Alvir are employees and stockholders of Pfizer Inc; Dr Gray was an employee and stockholder of Pfizer Inc at the time of analysis.

Comparison of motor, non-motor, and quality of life phenotype in Black and White patients with Parkinson's disease.

OBJECTIVE: To determine phenotypic differences between Black and White patients with Parkinson's disease (PD). DESIGN/METHODS: Patients with PD in a movement disorders clinic were approached to participate. After consent, a battery of tests was completed, including MDS-UPDRS Part III and the motor domains of the NIH Toolbox, Montreal Cognitive Assessment, Single Digit Modality Test, Patient-Reported Outcomes Measurement Information System (PROMIS) measures, Parkinson's Disease Questionnaire (PDQ39), Schwab and England, Epworth Sleepiness Scale, UPSIT smell test, and others. RESULTS: Twenty-four Black PD and 25 White PD patients participated. There were no differences in demographics and MDS-UPDRS Part III scores. White PD participants performed better on the 4-m walk gait speed test (p < 0.0005), standing balance test (p < 0.001), Montreal Cognitive Assessment (p < 0.0005), and Single Digit Modality Test (p < 0.005). Black PD participants had lower scores on PROMIS Satisfaction with Participation (p = 0.023), PROMIS Physical Function Mobility (p = 0.007), total PDQ39 (p = 0.008), PDQ39 mobility (p = 0.012), PDQ39 ADL (p = 0.014), PDQ39 cognition (p = 0.023), and PDQ39 body discomfort (p = 0.041) scales. CONCLUSIONS: Significant differences were found in motor, non-motor and quality of life scales in Black and White PD participants with similar demographics. Further work will need to be done to identify the underlying reasons and ways to mitigate these disparities.

Remote Learning Experience for Children With Developmental Disabilities During COVID-19 Pandemic in an Ethnically Diverse Community.

Owing to the COVID-19 pandemic, K-12 education in New York City quickly transitioned to remote learning. We performed a structured interview with 50 consecutive families of children with developmental disabilities about their experience with remote learning 2 months after COVID-19 lockdown. We observed that setting up the remote learning system was challenging for families who were born outside of the United States, spoke limited English, or had a lower level of education. Though some special education supports were in place, remote learning for children with developmental disabilities led to gaps in their therapeutic services. Children with more severe developmental disabilities joined less than 2 hours of remote learning per day and had a decrease in their therapeutic services. Most children (80%) relied on their parents for education. Additionally, for low-income communities, with families who spoke languages other than English, remote learning revealed a new barrier to access: technology.

The Corpse: Time for Another Look A Review of the Culture of Embalming, Viewing and the Social Construction.

Embalming of the dead is more common in the United States than anywhere else in the world. Battles far from home during the Civil War with concern for contagion from dead bodies being shipped home compelled President Lincoln to direct the troops to use embalming to allow the return of the Union dead to their homes. Viewings were common with war heroes and culminated with the viewing of Lincoln himself. In the 20th century embalming became a tradition despite substantial evidence indicating environmental and occupational hazards related to embalming fluids and carbon dioxide generated from manufacturing steel coffins before placing in concrete burial vaults. Embalming is promoted and considered helpful to the grieving process. Embalmers are expected to produce an illusion of rest, an image that in some ways disguises death for the benefit of mourners. The dead are carefully displayed in a condition of liminal repose where the 'true' condition is hidden, and death is removed from the actual event. In this paper we highlight the spiritual and cultural complexities of embalming related issues. We propose an innovative process to empower people facing serious illness, and their families to make shared and informed decisions, especially when death is an expected outcome.