Faculty Bibliography

BACKGROUND:Current understanding of advanced Parkinson's disease (PD) and its treatment is largely based on data from outpatient visits. The most advanced and disabled individuals become disconnected from both care and research. A previous pilot study among older, multimorbid patients with advanced PD demonstrated the feasibility of interdisciplinary home visits to reach the target population, improve care quality, and potentially avoid institutionalization. OBJECTIVE:The following protocol tests whether interdisciplinary home visits can 1) prevent decline in quality of life and 2) prevent worsening caregiver strain. Finally, the protocol explores whether program costs are offset by savings in healthcare use and institutionalization when compared with usual care. METHODS:In this single-center, controlled trial, 65 patient-caregiver dyads affected by advanced PD (Hoehn & Yahr stages 3-5 and homebound) are recruited to receive quarterly interdisciplinary home visits over one year. The one-year intervention is delivered by a nurse and research coordinator who travel to the home supported by a movement disorders specialist and social worker (both present by video). Each dyad is compared with age-, sex-, and Hoehn and Yahr stage-matched control dyads drawn from US participants in the longitudinal Parkinson's Outcome Project registry. The primary outcome measure is change in patient quality of life between baseline and one year. Secondary outcome measures include change in Hoehn & Yahr stage, caregiver strain, self-reported fall frequency, emergency room visits, hospital admissions, and time-to-institutionalization and/or death. Intervention costs and changes in healthcare utilization will be analyzed in a budget impact analysis exploring the potential for model adaptation and dissemination. RESULTS:The protocol was funded in September 2017 and approved by the Rush Institutional Review Board in October 2017. Recruitment began in May 2018 and closed in November 2019 with 65 patient-caregiver dyads enrolled. All study visits have been completed and analysis is underway. CONCLUSIONS:To our knowledge, this is the first controlled trial to investigate the effects of interdisciplinary home visits among homebound individuals with advanced Parkinson's disease and their caregivers. This study also establishes a unique cohort of patients from whom we can study the natural course of advanced PD, its treatments, and unmet needs. CLINICALTRIAL/UNASSIGNED:Clinicaltrials.gov, NCT03189459.

BACKGROUND:Stakeholder involvement in health care research has been shown to improve research development, processes, and dissemination. The literature is developing on stakeholder engagement methods and preliminarily validated tools for evaluating stakeholder level of engagement have been proposed for specific stakeholder groups and settings. OBJECTIVES/OBJECTIVE:This paper describes the methodology for engaging a Study Advisory Committee (SAC) in research and reports on the use of a stakeholder engagement survey for measuring level of engagement. METHODS:Stakeholders with previous research connections were recruited to the SAC during the planning process for a multicenter randomized control clinical trial, which is ongoing at the time of this writing. All SAC meetings undergo qualitative analysis, while the Stakeholder Engagement Survey instrument developed by the Patient-Centered Outcomes Research Institute (PCORI) is distributed annually for quantitative evaluation. RESULTS:The trial's SAC is composed of 18 members from 3 stakeholder groups: patients and their caregivers; patient advocacy organizations; and health care payers. After an initial in-person meeting, the SAC meets quarterly by telephone and annually in-person. The SAC monitors research progress and provides feedback on all study processes. The stakeholder engagement survey reveals improved engagement over time as well as continued challenges. CONCLUSIONS:Stakeholder engagement in the research process has meaningfully contributed to the study design, patient recruitment, and preliminary analysis of findings.

BACKGROUND:Measuring the effectiveness of transitional care interventions has historically relied on health care utilization as the primary outcome. Although the Care Transitions Measure was the first outcome measure specifically developed for transitional care, its applicability beyond the hospital-to-home transition is limited. There is a need for patient-centered outcome measures (PCOMs) to be developed for transitional care settings (ie, TC-PCOMs) to ensure that outcomes are both meaningful to patients and relevant to the particular care transition. The overall objective of this paper is to describe the opportunities and challenges of integrating TC-PCOMs into research and practice. METHODS AND RESULTS/RESULTS:This narrative review was conducted by members of the Patient-Centered Outcomes Research Institute (PCORI) Transitional Care Evidence to Action Network. We define TC-PCOMs as outcomes that matter to patients because they account for their individual experiences, concerns, preferences, needs, and values during the transition period. The cardinal features of TC-PCOMs should be that they are developed following direct input from patients and stakeholders and reflect their lived experience during the transition in question. Although few TC-PCOMs are currently available, existing patient-reported outcome measures could be adapted to become TC-PCOMs if they incorporated input from patients and stakeholders and are validated for the relevant care transition. CONCLUSION/CONCLUSIONS:Establishing validated TC-PCOMs is crucial for measuring the responsiveness of transitional care interventions and optimizing care that is meaningful to patients.

Fathers' involvement in early childhood is important for children's physical, emotional, and cognitive development, particularly in low-income families. However, little is known about the longitudinal relations between early father involvement and children's later physiological responses to chronic stress and behaviors impacted by stress in the context of poverty. These issues are particularly important among Latinx immigrant families who face significant psychosocial and poverty-related risk. In the current study, we examined the relationship between father involvement in infancy and physiological chronic stress in the middle childhood period, as measured through hair cortisol concentration (HCC), and several behavioral measures (attention problems, working memory) in a Latinx immigrant sample with low income. Father involvement in infancy predicted children's later HCC, and working memory in second to third grade. Father involvement also moderated the effect of HCC on working memory, such that increased HCC predicted better working memory when fathers were not involved. These findings suggest that the fathers' involvement in infancy has lasting impacts on health and behavior and that associations between physiological and behavioral measures of stress may be moderated by differences in early father involvement.

BACKGROUND:In contrast to the current broad dissemination of telemedicine across medical specialties, previous research focused on the effectiveness of telemedicine in special populations and for behavioral health encounters; demonstrating that both physician and patient factors impact the efficacious use of telemedicine. OBJECTIVE:We evaluated physician perceptions of the appropriateness of telemedicine for patients attending the primary care practices of a federally qualified health center in New York City. METHODS:Anonymous cross-sectional survey including closed and open-ended questions. We used chi-square to test whether providers from certain specialties were more likely to state they would use telemedicine in the future. We used t-test to compare age between those who would vs. would not use telemedicine. Then, we used logistic regression to test whether age and specialty were both correlated with desire to use telemedicine in the future. We used thematic content analysis to describe the reasons providers felt they would not want to use telemedicine in the future, and to describe the situations for which they felt telemedicine would be appropriate. RESULTS:Of 272 FHC providers who were sent the electronic survey, 159(58%) responded within the 2-week survey time frame. Mean age of providers was 45 years (range 28-75). Overall, 81% stated they would use telemedicine in the future. Compared to the Family Medicine, Internal Medicine, Behavioral Health, Dental, and OB/GYN specialties, providers from Pediatrics, Med-Peds, Subspecialties and Surgery [Pro-telemedicine specialties] were more likely to believe telemedicine would be useful post pandemic (94% vs. 72%, p<0.05). Providers who reported they would use telemedicine in the future were younger [mean age 44(42-46) vs. 50(46-55), p<0.01). In regression analysis, both pro-telemedicine specialties and age were significantly associated with odds of reporting they would use telemedicine in the future [pro-specialties: 5.2(1.7-16.2); younger age: 1.05(1.01-1.08)]. Providers who did not want to use telemedicine in the future cited concerns about inadequate patient care, lack of physical patient interaction, technology issues, and lack of necessity. Providers who felt telemedicine would be useful cited the following situations: follow up visits, medication refills, urgent care, patient convenience, and specific conditions such has behavioral health, dermatology visits, and chronic care management. CONCLUSIONS:The majority of health providers in this resource poor setting in a federally qualified health center believed that telemedicine would be useful for providing care after the pandemic is over. CLINICALTRIAL/UNASSIGNED/:

OBJECTIVE:To review the contemporary issues of healthcare disparities in Headache Medicine with regard to race/ethnicity, socioeconomic status and geography and propose solutions for addressing these disparities. METHODS:An internet and PubMed search was performed and literature was reviewed for key concepts underpinning disparities in Headache Medicine. Content was refined to areas most salient to our goal of informing the provision of equitable care in headache treatment through discussions with this group of 16 experts from a range of headache subspecialties. RESULTS:Taken together, a multitude of factors including racism, socioeconomic status and insurance status and geographical disparities contribute to the inequities that exist within the healthcare system when treating headache disorders. Interventions such as improving public education, advocacy, optimizing telemedicine, engaging in community outreach to educate primary care providers, training providers in cultural sensitivity and competence and implicit bias, addressing health literacy and developing recruitment strategies to increase representation of underserved groups within headache research are proposed as solutions to ameliorate disparities. CONCLUSION/CONCLUSIONS:Neurologists have a responsibility to provide and deliver equitable care to all. It is important that disparities in the management of headache disorders are identified and addressed.