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Availability of Services and Caregiver Burden: Supporting Individuals With Neurogenetic Conditions During the COVID-19 Pandemic.

ABSTRACT: Because of the COVID-19 pandemic, in-person services for individuals with neurodevelopmental disabilities were disrupted globally, resulting in a transition to remote delivery of services and therapies. For individuals with neurogenetic conditions, reliance on nonclinical caregivers to facilitate all therapies and care was unprecedented. The study aimed to (1) describe caregivers' reported impact on their dependent's services, therapies, medical needs, and impact on themselves as a result of the COVID-19 pandemic and (2) assess the relationship between the extent of disruption of services and the degree of self-reported caregiver burden. Two online questionnaires were completed by caregivers participating in Simons Searchlight in April and May 2020. Surveys were completed by caregivers of children or dependent adults with neurodevelopmental genetic conditions in Simons Searchlight. Caregivers reported that the impact of the COVID-19 pandemic moderately or severely disrupted services, therapies, or medical supports. The majority of caregivers were responsible for providing some aspect of therapy. Caregivers reported "feeling stressed but able to deal with problems as they arise," and reported lower anxiety at follow-up. Caregivers reported that telehealth services were not meeting the needs of those with complex medical needs. Future surveys will assess if and how medical systems, educational programs, therapists, and caregivers adapt to the challenges arising during the COVID-19 pandemic.

SUBMITTER: Kowanda M

PROVIDER: S-EPMC8033176 | biostudies-literature | 2021 Aug

REPOSITORIES: biostudies-literature

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Availability of Services and Caregiver Burden: Supporting Individuals With Neurogenetic Conditions During the COVID-19 Pandemic.

Kowanda Michelle M Cartner Lindsey L Kentros Catherine C Geltzeiler Alexa R AR Singer Kaitlyn E KE Weaver W Curtis WC Lehman Christopher D CD Smith Simone S Smith Rebecca Sheedy RS Walsh Lauren Kasparson LK Diehl Katharine K Nagpal Natalie N Brooks Elizabeth E Mebane Caroline M CM Wilson Ashley L AL Marvin Alison R AR White L Casey LC Law J Kiely JK Jensen William W Daniels Amy M AM Tjernagel Jennifer J Snyder LeeAnne Green LG Taylor Cora M CM Chung Wendy K WK

Journal of child neurology 20210408 9

Because of the COVID-19 pandemic, in-person services for individuals with neurodevelopmental disabilities were disrupted globally, resulting in a transition to remote delivery of services and therapies. For individuals with neurogenetic conditions, reliance on nonclinical caregivers to facilitate all therapies and care was unprecedented. The study aimed to (1) describe caregivers' reported impact on their dependent's services, therapies, medical needs, and impact on themselves as a result of the ...[more]

PMID: 33829918

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Project description:Introduction: There is a growing awareness about the noxious effects of the 2019 Coronavirus Disease (COVID-19) pandemic on the mental health of the elderly. However, there is limited information from clinically driven research. The objectives of the present study were to examine the magnitude of psychiatric symptoms and to determine their association with caregiver distress, in a cross-section of community-dwelling older adults and a subsample of aging adults with Down syndrome (DS) attending a psychogeriatric service in São Paulo, Brazil. Method: Telephone-based interviews and electronically filled self-assessment questionnaires were used to collect information from patients and caregivers, addressing their impressions and concerns about the pandemic and related effects on the patient's emotional state and behavior. Clinical information was obtained from hospital charts, medical records, and psychometric tests administered through telephone interviews [Hospital Anxiety and Depression Scale (HADS) and Neuropsychiatric Inventory Questionnaire (NPI-Q)]. Results: We included 100 consecutive participants, comprising 71 older adults with psychogeriatric/neurocognitive disorders and 29 aging adults with DS. Higher HADS and NPI-Q scores were significantly associated with caregiver distress (p < 0.05) in both groups. Correlation analyses indicated strong, positive associations between caregiver burden and scores in HADS anxiety (HADS-A) and HADS depression (HADS-D) scales in the subsamples of euploid and DS subjects. Higher NPI-Q scores in the former group were also correlated with caregiver distress, with stronger associations for neuropsychiatric symptoms. Similar findings were observed among DS subjects. ANOVA tests indicated significant associations between NPI-Q scores and caregiver distress among dementia patients, as well as with HADS scores. Similar results were found after multiple linear regressions; as such, among the elderly subsample, higher scores in HADS-A (p = 0.002) and HADS-D (p = 0.001) predict a significant impact on caregiver burden (p < 0.00001, R 2 0.46); taking into consideration caregiver burden as a dependent variable and NPI-Q total score as an independent variable, we obtained significant strong prediction values for either DS (p < 0.00001, R 2 0.95) or elderly adults (p < 0.00001, R 2 0.88). Conclusion: During the COVID-19 pandemic, patients with neurocognitive disorders present with clinically relevant neuropsychiatric symptoms, with significant impact on caregiver distress. Apathy, aberrant motor behavior, sleep disorders, and psychoses were the main psychopathological domains, which had determined caregiver burden worsening.

Project description:BackgroundHealthcare accessibility and utilization are important social determinants of health. Lack of access to healthcare, including missed or no-show appointments, can have negative health effects and be costly to patients and providers. Various office-based approaches and community partnerships can address patient access barriers.Objectives(1) To understand provider perceptions of patient barriers; (2) to describe the policies and practices used to address late or missed appointments, and (3) to evaluate access to patient support services, both in-clinic and with community partners.MethodsMailed cross-sectional survey with online response option, sent to all Nebraska primary care clinics (n = 577) conducted April 2020 and January through April 2021. Chi-square tests compared rural-urban differences; logistic regression of clinical factors associated with policies and support services computed odds ratios (OR) and 95% confidence intervals (CI).ResultsResponse rate was 20.3% (n = 117), with 49 returns in 2020. Perceived patient barriers included finances, higher among rural versus urban clinics (81.6% vs. 56.1%, p =.009), and time (overall 52.3%). Welcoming environment (95.5%), telephone appointment reminders (74.8%) and streamlined admissions (69.4%) were the top three clinic practices to reduce missed appointments. Telehealth was the most commonly available patient support service in rural (79.6%) and urban (81.8%, p =.90) clinics. Number of providers was positively associated with having a patient navigator/care coordinator (OR = 1.20, CI = 1.02-1.40). For each percent increase in the number of privately insured patients, the odds of providing legal aid decreased by 4% (OR = 0.96, CI = 0.92-1.00). Urban clinics were less likely than rural clinics to provide social work services (OR = 0.16, CI = 0.04-0.67) or assist with applications for government aid (OR = 0.22, CI = 0.06-0.90).ConclusionsPractices to reduce missed appointments included a variety of reminders. Although finances and inability to take time off work were the most frequently reported perceived barriers for patients' access to timely healthcare, most clinics did not directly address them. Rural clinics appeared to have more community partnerships to address underlying social determinants of health, such as transportation and assistance applying for government aid. Taking such a wholistic partnership approach is an area for future study to improve patient access.

Project description:ImportanceScreening for lung cancer with low-dose computed tomography (LDCT) has been shown to reduce lung cancer mortality in trials that included relatively younger, healthier, and predominantly White populations. The comorbidity profiles among patients undergoing lung cancer screening in practice settings are poorly understood.ObjectiveTo evaluate the comorbidity profiles of patients in the Personalized Lung Cancer Screening (PLuS) cohort as a clinical setting vs the National Lung Screening Trial (NLST) participants in a clinical trial setting.Design, setting, and participantsThis multicenter cohort study was conducted across 3 health care systems in California, Florida, and South Carolina and included patients who underwent LDCT lung cancer screening between 2016 and 2021. Data were analyzed between January 1, 2016, and December 31, 2021.ExposuresReceipt of the LDCT scan identified through Current Procedural Terminology and Healthcare Common Procedure Coding System codes.Main outcomes and measuresDetailed comorbidity data, measures of pulmonary function, and study data abstracted from electronic health records and institutional, Surveillance, Epidemiology, and End Results (SEER), and state registries were compared with self-reported comorbid conditions of participants in the LDCT arm of the NLST.ResultsThe PLuS cohort (n = 31 795) included 49.0% participants aged 65 years or older vs 26.6% in the NLST cohort (n = 26 723); 23.3% were individuals of racial and ethnic minority groups in the PLuS cohort compared with 8.5% in the NLST. The prevalence of comorbidity was substantially higher in the PLuS cohort than the NLST group, particularly chronic obstructive pulmonary disease (32.7% vs 17.5%), diabetes (24.6% vs 9.7%), and heart disease (15.9% vs 12.9%). Among those in the PLuS cohort, 19.3% had a Charlson Comorbidity Index score of 4 or higher, 18.0% had a frailty index greater than 0.20, 16.9% had a forced expiratory volume in 1 second (FEV-1) lower than 50% of predicted, and almost 5% had an ejection fraction lower than 40%. The prevalence of multimorbidity and frailty was especially high among those in the 75 years or older age group.Conclusions and relevanceThis study found that the PLuS cohort members were older, had greater illness severity, and more racially and ethnically diverse than the NLST participants. Older patients and those with consequential comorbidity likely had different risk-benefit profiles, which may have affected screening outcomes. The high prevalence of multimorbidity, frailty, and impaired cardiopulmonary function in the PLuS cohort suggests that the balance of benefits and harms observed in the NLST group may not translate to the clinical setting.

Dataset Information

Availability of Services and Caregiver Burden: Supporting Individuals With Neurogenetic Conditions During the COVID-19 Pandemic.

Publications

Availability of Services and Caregiver Burden: Supporting Individuals With Neurogenetic Conditions During the COVID-19 Pandemic.

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