Purpose As the COVID-19 pandemic resulted in social restrictions around the globe, this cross-sectional survey aimed to assess the impact of social isolation on self- or proxy-reported symptoms of Parkinson’s disease (PD) during the pandemic. Patients and Methods The survey was distributed among 7109 subscribers of the Parkinson and Movement Disorders Alliance (PMD Alliance) News and Information list and was open only to people with PD (PwP) and care partners (CP, defined as main caregivers of PwP and serving as proxy respondents). No attempt was made to identify PwP and CP pairs. The survey was distributed online using Survey Monkey between 01/06/2021 and 02/27/2021. Respondents were grouped by level of social support from outside of their household during the pandemic (decreased or maintained [ie, the same as pre-pandemic or increased]). Results Of 7109 invited participants, 718 responded to the survey (response rate 10.1%). PwP (self-reports) accounted for 70.6% of respondents and CP (proxy reports) for 29.4%. Decreased social support from outside of the household during the COVID-19 pandemic (58.5% of all responses) was significantly associated with increases in sadness/depression and anxiety, compared with maintained levels of social support (p < 0.0001 for both comparisons). It was also associated with increased burden of several non-motor (decline in memory, problem solving, or communication, p = 0.0009; new or worsening confusion, p < 0.0001; new or worsening delusions, p = 0.018) and motor PD symptoms. Conclusion Decline in social support from outside of the household during the COVID-19 pandemic showed a statistically significant and negative association with the burden of mood and non-motor symptoms of PD. These results call for increased vigilance towards non-motor symptoms in PwP experiencing social isolation and highlight the need for stronger provider focus on encouraging PwP and their CPs to build and maintain social connections and engagements.

Background Rett syndrome (RTT) is a neurodevelopmental disorder that almost exclusively affects females and is associated with high clinical burden. However, literature characterizing the real-world journey of patients with RTT is limited. This study provided an overview of the epidemiology, patient characteristics, clinical manifestations, healthcare resource utilization (HRU), costs, and treatment patterns of patients with RTT in the US. Methods IQVIA™ Medical Claims Data and Longitudinal Prescription Data (11/01/2016–10/31/2019) were used to identify female patients with RTT, with the first observed diagnosis defined as the index date. Annual incidence and prevalence of RTT were assessed over the entire study period; clinical manifestations, all-cause and RTT-related HRU and costs, and treatment patterns were evaluated during the observation period—from the index date to end of clinical activity or end of data availability, whichever occurred first. Results were further stratified into pediatric (< 18 years) and adult (≥ 18 years) subgroups. Results In 2019, prevalence and incidence of RTT was 0.32 and 0.23 per 10,000 enrollees, respectively. Among 5,940 female patients (pediatric: 3,078; adult: 2,862) with mean observation period of 2.04 years, the most prevalent clinical manifestations were neurological disorders (72.8%), gastrointestinal/nutritional disorders (41.9%), and orthopedic disorders (34.6%). The incidence rate of all-cause HRU was 44.43 visits per-patient-per-year and RTT-related HRU comprised 47% of all-cause HRU. Mean all-cause healthcare costs were $40,326 per-patient-per-year, with medical costs driven by home/hospice care visits, therapeutic services, outpatient visits, and inpatient visits. RTT-related healthcare costs comprised 45% of all-cause healthcare costs. The most prevalent supportive therapy and pharmacologic agent were feeding assistance (37.9%) and antiepileptic drugs (54.8%), respectively. Trends were similar by subgroup; although, rates of HRU were generally higher among pediatric patients relative to adult patients (all-cause: 52.43 and 35.86, respectively), which translated into higher mean healthcare costs (all-cause: $45,718 and $34,548, respectively). Conclusions Patients with RTT have substantial disease burden, including prevalent clinical manifestations, high rates of HRU and annual healthcare costs, and reliance on pharmacologic and supportive therapies. These findings underscore the unmet need for effective therapies to target the multifactorial manifestations of RTT.

Objective: To investigate the role of (1) antipsychotic medication review (AP-MR) documentation quality of Minimum Data Set 3.0 (MDS) surveys, and (2) treatment-continuity on discharge-to-community and clinical outcomes among long-term care (LTC) residents treated with pimavanserin. Design, Setting, and Participants: A retrospective cohort analysis of Parts A, B, and D claims from Medicare 100% sample merged with MDS data from June 2016 through December 2018 was conducted. Residents with more than 100-day LTC stay and 1 pimavanserin prescription or more with completed antipsychotic-use MDS question were selected. AP-MR documentation quality (ie, gradual dose reduction [GDR] attempts, clinical contraindication to GDR), discharge-to-community, and clinical outcomes (eg, falls, fractures) were obtained from MDS. Treatment-continuity was assessed from Part D claims. Data Analysis: Descriptive statistics (frequencies, proportions, Chi-square tests, and means) and adjusted logistic regressions (ORs with 95% CIs reported association between pimavanserin treatment-continuity and discharge-to-community. Results: Of 4,021 eligible residents, 29% (n = 1,182) attempted a GDR per AP-MR MDS documentation. Approximately 41% (n = 1,665) had documentation showing GDR was clinically contraindicated, yet 39% (n = 645) still attempted GDR. While overall discharge-to-community rates were low, it was significantly higher (P < 0.05) among LTC residents continuing (14.94%; n = 380/2,546) versus discontinuing (11.84%; n = 171/1,444) pimavanserin. OR for treatment-continuity was 1.96, 95% CI 1.50-2.55. Residents continuing pimavanserin had lower incidents of falls (2.8% vs 9.4%), hip fractures (0.29% vs 0.69%), and pelvic/femur fractures (0% vs 0.92%) versus those residents who discontinued it. Conclusions: Among LTC-stay residents, high discordance between GDR rates and AP-MR MDS documentation quality was observed. Pimvanserin treatment-continuity showed greater likelihood of discharge-to-community; continued documentation training can ensure appropriate antipsychotic use with a balanced benefit:risk profile.

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