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Share the Care Peer Mentoring Program for Informal Caregivers of Homebound Individuals with Advanced Parkinson's Disease: Study Design, Implementation, and Baseline Participant Characteristics

Fleisher, Jori; Akram, Faizan; Lee, Jeanette; Klostermann, Ellen C; Hess, Serena P; Myrick, Erica; Levin, Melissa; Ouyang, Bichun; Wilkinson, Jayne; Hall, Deborah; Chodosh, Joshua
BACKGROUND:Homebound individuals with advanced Parkinson's Disease (PD) require intensive caregiving, the majority of which is provided by informal, family caregivers. PD caregiver strain is an independent risk factor for institutionalization. There are currently no effective interventions to support advanced PD caregivers. Studies in other neurologic disorders, however, have demonstrated the potential for peer mentoring interventions to improve caregiver outcomes. In the context of an ongoing trial of interdisciplinary home visits, we designed and piloted a nested trial of caregiver peer mentoring for informal caregivers of individuals with advanced PD. OBJECTIVE:To test the feasibility of peer mentoring for caregivers of homebound individuals with advanced PD and to evaluate its effects on anxiety, depression, and caregiver strain. METHODS:Single-center pilot study of 16 weeks of caregiver peer mentoring nested within a yearlong controlled trial of interdisciplinary home visits. We recruited 34 experienced former or current family caregivers who completed structured mentor training. Caregivers enrolled in the larger interdisciplinary home visit trial consented to receive 16 weeks of weekly, one-to-one peer mentoring calls with a trained peer mentor. Weekly calls were guided by a curriculum on advanced PD management and caregiver support. Fidelity to and satisfaction with the intervention were gathered via biweekly study diaries. Anxiety, depression, and caregiver strain were measured pre- and post-mentoring intervention at Home Visits 2 and 3. RESULTS:Enrollment and peer mentor training began in 2018, and 65 caregivers enrolled in the overarching trial. The majority of mentors and mentees were white, female spouses or partners of individuals with PD, and mentors had a mean of 8.7 years of caregiving experience (SD 6.4). Thirty-three mentors were matched with at least one mentee. CONCLUSIONS:This is the first study of caregiver peer mentoring in PD and may establish an adaptable and sustainable model for disease-specific caregiver interventions in PD and other neurodegenerative diseases. CLINICALTRIAL/BACKGROUND:ClinicalTrials.gov NCT03189459; http://clinicaltrials.gov/ct2/show/ NCT03189459.
PMID: 35481819
ISSN: 1929-0748
CID: 5217582

Utilization of Palliative Care for Patients with Acute Kidney Injury and COVID-19 (S541) [Meeting Abstract]

Scherer, J; Rau, M; Qian, Y; Soomro, Q; Sullivan, R; Zhong, H; Linton, J; Chodosh, J; Charytan, D
Outcomes: 1. Understand the historical use of palliative care for patients with acute kidney injury (AKI) 2. Describe the use of palliative care for patients with AKI and COVID-19 during the surge at our institution 3. Describe the associations of palliative care with subsequent health care utilization such as hospice use, ICU time, and mechanical ventilation Original Research Background: Acute kidney injury (AKI) is a common morbidity seen in patients with COVID-19 and is associated with high mortality. Palliative care is valuable for these patients yet is historically underused in AKI. Research Objectives: To describe the use of palliative care and subsequent health care utilization by COVID-19 patients with AKI.
Method(s): A retrospective analysis of NYU's electronic health data of COVID-19 hospitalizations between March 2, 2020 and August 25, 2020. AKI was defined by the AKI Network creatinine criteria. Regression models examined characteristics associated with a receiving palliative care and discharge to hospice versus death in the hospital.
Result(s): Patientswith COVID-19 and AKI were more likely than those without AKI to receive palliative care (42% vs 7%, p < 0.001); however, consults came significantly later (10 days from admission vs 5 days, p < 0.001). 66% of patients initiated on renal replacement therapy (RRT) received palliative care versus 37% (p < 0.001) of those with AKI not on RRT, also later in timing (12 days from admission vs 9 days, p = 0.002). Patients with AKI had a significantly longer stay, more ICU admissions, use of mechanical ventilation, discharges to hospice (6% vs 3%), and changes in code status (34% vs 7%, p < 0.001) than those without AKI. Among those who received palliative care, AKI both without RRT (adjusted odds ratio [aOR] 0.51, 95% confidence interval [CI] 0.27-0.95) and with RRT (aOR 0.18, 95% CI 0.04-0.67) was associated with a lower likelihood of discharge to hospice versus hospital death compared to those without AKI.
Conclusion(s): Palliative care was used more for patients with AKI and COVID-19 than historically reported, yet this consultation came later in the hospital course and did not avoid invasive interventions despite high mortality. Implications for Research, Policy, or Practice: These data can lead to further exploration of earlier timing of palliative care consultation in AKI.
Copyright
EMBASE:2017644107
ISSN: 1873-6513
CID: 5240182

Assessing Equitable Inclusion of Underrepresented Older Adults in Alzheimer's Disease, Related Cognitive Disorders, and Aging-Related Research: A Scoping Review

Godbole, Nisha; Kwon, Simona C; Beasley, Jeannette M; Roberts, Timothy; Kranick, Julie; Smilowitz, Jessica; Park, Agnes; Sherman, Scott E; Trinh-Shevrin, Chau; Chodosh, Joshua
BACKGROUND AND OBJECTIVES/OBJECTIVE:The rapidly aging and diversifying U.S. population is challenged by increases in prevalence of Alzheimer's disease (AD) and aging-related disorders. We conducted a scoping review to assess equitable inclusion of diverse older adult populations in aging research focused on National Institutes of Health (NIH)-sponsored research. RESEARCH DESIGN AND METHODS/METHODS:The scoping review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA-Scr) Protocol. The search was limited to NIH-funded studies focusing on aging, AD and Alzheimer's disease-related dementias (ADRD) and included adults aged 55+. The priority populations and health disparities put forth by the NIA Health Disparities Framework serve as a model for guiding inclusion criteria and for interpreting the representation of these underrepresented groups, including racial ethnic minorities, socioeconomically disadvantaged, rural populations, groups with disabilities, and LGBTQ communities. RESULTS:Our search identified 1,177 records, of which 436 articles were included in the analysis. Inclusion of individuals with ADRD and mild cognitive impairment, racial ethnic minorities, rural populations, socioeconomically disadvantaged, groups with disabilities, and LGBTQ communities were poorly specified in most studies. Studies used multiple recruitment methods, conducting studies in community settings (59%) and hospitals/clinics (38%) most frequently. Incentives, convenience factors, and sustained engagement via community-based and care partners were identified as key strategies for improved retention. DISCUSSION AND IMPLICATIONS/CONCLUSIONS:This scoping review identified gaps in existing literature and aims for future work, including stronger research focus on, better inclusion of, and improved data collection and reporting of older adults from underrepresented groups.
PMID: 35472166
ISSN: 1758-5341
CID: 5217412

Over-the-counter hearing aids: What will it mean for older Americans?

Blustein, Jan; Weinstein, Barbara E; Chodosh, Joshua
In October 2021 the Food and Drug Administration released draft rules creating a new class of hearing aids to be sold over the counter. Since Medicare does not cover hearing aids, the ready availability of low-cost aids is potentially good news for the millions of older Americans with hearing loss, a disorder that is associated with isolation, depression and poor health. However, better financial access to hearing aids will not necessarily translate into better hearing: many older people will need assistance in fitting, using and maintaining their aids. Policymakers, managers, and clinicians need to consider how to structure, fund and deliver these vital adjunctive services.
PMID: 35397113
ISSN: 1532-5415
CID: 5201772

Utilization of Palliative Care for Patients with COVID-19 and Acute Kidney Injury during a COVID-19 Surge

Scherer, Jennifer S; Qian, Yingzhi; Rau, Megan E; Soomro, Qandeel H; Sullivan, Ryan; Linton, Janelle; Zhong, Judy; Chodosh, Joshua; Charytan, David M
BACKGROUND AND OBJECTIVES/OBJECTIVE:AKI is a common complication of coronavirus disease 2019 (COVID-19) and is associated with high mortality. Palliative care, a specialty that supports patients with serious illness, is valuable for these patients but is historically underutilized in AKI. The objectives of this paper are to describe the use of palliative care in patients with AKI and COVID-19 and their subsequent health care utilization. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS/METHODS:We conducted a retrospective analysis of New York University Langone Health electronic health data of COVID-19 hospitalizations between March 2, 2020 and August 25, 2020. Regression models were used to examine characteristics associated with receiving a palliative care consult. RESULTS:=0.002). Despite greater use of palliative care, patients with AKI had a significantly longer length of stay, more intensive care unit admissions, and more use of mechanical ventilation. Those with AKI did have a higher frequency of discharges to inpatient hospice (6% versus 3%) and change in code status (34% versus 7%) than those without AKI. CONCLUSIONS:Palliative care was utilized more frequently for patients with AKI and COVID-19 than historically reported in AKI. Despite high mortality, consultation occurred late in the hospital course and was not associated with reduced initiation of life-sustaining interventions. PODCAST/UNASSIGNED:This article contains a podcast at https://www.asn-online.org/media/podcast/CJASN/2022_02_24_CJN11030821.mp3.
PMID: 35210281
ISSN: 1555-905x
CID: 5172422

Hearing assessment-The challenges and opportunities of self report [Editorial]

Chodosh, Joshua; Blustein, Jan
PMID: 35006618
ISSN: 1532-5415
CID: 5118422

Perceptions of Treatment Burden Among Caregivers of Elders With Diabetes and Co-morbid Alzheimer's Disease and Related Dementias: A Qualitative Study

Vaughan Dickson, Victoria; Melnyk, Halia; Ferris, Rosie; Leon, Alejandra; Arcila-Mesa, Mauricio; Rapozo, Crystalinda; Chodosh, Joshua; Blaum, Caroline S
Many older adults with diabetes (DM) have co-occurring Alzheimer's Disease (AD) and AD-Related Dementias (ADRD). Complex treatment plans may impose treatment burden for caregivers responsible for day-to-day self-management. The purpose of this qualitative study was to describe caregiver perceptions of treatment burden for people with DM-AD/ADRD. Caregivers (n = 33) of patients with DM-AD/ADRD participated in semi-structured interviews about their caregiver role and perceptions of treatment burden of DM-AD/ADRD management. Qualitative data were analyzed using content analysis (ATLAS.ti). Caregivers reported high levels of burden related to complex treatment/self-management for patients with DM-AD/ADRD that varied day-to-day with the patient's cognitive status. Four themes were: (1) trajectory of treatment burden; (2) navigating multiple healthcare providers/systems of care; (3) caregiver role conflict; and (4) emotional burden. Interventions to reduce caregiver treatment burden should include activating supportive services, education, and care coordination especially, if patient treatment increases in complexity over time.
PMID: 34991360
ISSN: 1552-3799
CID: 5107342

Perceptions of Treatment Burden Among Caregivers of Elders With Diabetes and Co-morbid Alzheimer's Disease and Related Dementias: A Qualitative Study

Dickson, Victoria Vaughan; Melnyk, Halia; Ferris, Rosie; Leon, Alejandra; Arcila-Mesa, Mauricio; Rapozo, Crystalinda; Chodosh, Joshua; Blaum, Caroline S.
ISI:000740786500001
ISSN: 1054-7738
CID: 5182522

The impact of a Friendly Telephone Calls program on visits with physicians during pandemic [Letter]

Blachman, Nina L; Lee, Yi Shan; Arcila-Mesa, Mauricio; Ferris, Rosie; Chodosh, Joshua
PMCID:8447359
PMID: 34337742
ISSN: 1532-5415
CID: 5107692

Longitudinal, Interdisciplinary Home Visits vs. Usual Care for Homebound People with Advanced Parkinson's Disease (IN-HOME-PD): Study protocol for a controlled trial

Fleisher, Jori; Hess, Serena; Sennott, Brianna; Myrick, Erica; Wallace, Ellen Klostermann; Lee, Jeanette; Sanghvi, Maya; Woo, Katheryn; Ouyang, Bichun; Wilkinson, Jayne; Beck, James; Johnson, Tricia; Hall, Deborah; Chodosh, Joshua
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.
PMID: 34238753
ISSN: 1929-0748
CID: 4933512