A Descriptive Study of the Caregiver's Experience of Managing Care for Children and Adolescents With Attention-Deficit/Hyperactivity Disorder During the COVID-19 Pandemic: The UNCOVER Study.

Objective: To assess the perceived impact of the COVID-19 pandemic on treatment and quality of life for children and adolescents in the United States who have attention-deficit/hyperactivity disorder (ADHD).Methods: An online survey of members of PatientsLikeMe was conducted via the health-tracking platform between March 10 and April 2, 2021. Participants were adult caregivers of dependents aged 6-18 years with diagnosed ADHD and who were taking or not taking prescription medication for ADHD.Results: The study enrolled 37 adult caregivers of 37 children/adolescents; 36 caregivers responded to treatment questions for children/adolescents. Twenty were caregivers to dependents currently being treated for ADHD. Compared with before the pandemic, there was a decrease in the percentage of children/adolescents using prescription ADHD medication from 65% to 54% during the pandemic. At least 1 switch in ADHD medication and a dosage change were reported by 5 and 8 caregivers, respectively. Seven caregivers reported their dependents had had difficulty adhering to their medication regimen during the pandemic, which caregivers ascribed to a lack of a structured routine. Telehealth visits for their dependents were reported by 13 caregivers. None of the caregivers of dependents taking ADHD medication reported a major impact of the pandemic on ADHD-related medical care. Irrespective of treatment status, 17 caregivers reported that their dependents had ADHD management goals and agreed that the pandemic had a negative impact on progress toward those goals.Conclusions: Many caregivers of children/adolescents with ADHD found it challenging to manage their dependents' symptoms and treatment during the pandemic.Prim Care Companion CNS Disord 2024;26(1):23m03587. Author affiliations are listed at the end of this article.

The Experience of Adults With Attention-Deficit/Hyperactivity Disorder in 2021 During the COVID-19 Pandemic: The UNCOVER Study.

Background: This study surveyed adults with attention-deficit/hyperactivity disorder (ADHD) to understand the impact of the COVID-19 pandemic on aspects of their disorder, quality of life, and treatment experience.Methods: A cross-sectional survey of US-resident members of PatientsLikeMe (PLM) was conducted through the PLM health tracking platform between March 10 and April 2, 2021. Adult participants with self-reported ADHD currently taking prescription medication (treated) and those not taking medication (untreated) were enrolled.Results: The study included 93 adults, of whom 48 patients were taking medication for ADHD. Most of the 45 untreated patients were not taking medication for reasons unrelated to the pandemic. Of the 47 treated patients who also completed the survey, 22 patients had ≥ 1 switch in ADHD medication type, and nearly half had a dosage change during the pandemic. Further, 29 treated patients reported a negative impact of the pandemic on their daily ADHD medication routine, primarily due to a "lack of schedule" and "changes to structured routine," and 16 patients reported "increased difficulty" adhering to prescribed ADHD medication during the pandemic compared with before the pandemic. Of the total study population, 52 patients reported having a telehealth visit during the pandemic, and 38 patients had an ADHD management goal. All but 1 patient with an ADHD management goal reported a negative impact of the pandemic on progress toward their goal. More treated patients than untreated adults reported having control over bothersome ADHD symptoms.Conclusions: Adults with ADHD reported increased difficulty in managing their symptoms during the COVID-19 pandemic.Prim Care Companion CNS Disord 2023;25(4):22m03474. Author affiliations are listed at the end of this article.

Design of a real-world, prospective, longitudinal, observational study to compare vortioxetine with other standard of care antidepressant treatments in patients with major depressive disorder: a PatientsLikeMe survey.

BACKGROUND: Major depressive disorder (MDD) is a recurrent psychiatric condition that presents challenges in responding to treatment and achieving long-term remission. To improve outcomes, a shared decision-making treatment approach with patient and healthcare practitioner (HCP) engagement is vital. PatientsLikeMe (PLM), a peer community of patients, provides information on MDD, symptoms, and treatment through forums and resources, helping patients stay engaged in their treatment journey. Data on PLM can be harnessed to gain insights into patient perspectives on MDD symptom management, medication switches, and treatment goals and measures. METHODS: This ongoing, decentralized, longitudinal, observational, prospective study is being conducted using the PLM platform in two parts, enrolling up to 500 patients with MDD in the United States aged ≥ 18 years to compare vortioxetine with other monotherapy antidepressants. The first qualitative component consists of a webinar and discussion forum with PLM community members with MDD, followed by a pilot for functionality testing to improve the study flow and questions in the quantitative survey. The quantitative component follows on the PLM platform, utilizing patient-reported assessments, over a 24-week period. Three surveys will be conducted at baseline and weeks 12 and 24 to collect data on patient global impression of improvement, depression severity, cognitive function, quality of life (QoL) and well-being, medication satisfaction, emotional blunting, symptoms of anhedonia and resilience, as well as goal attainment. Quantitative results will be compared between groups. The qualitative component is complete; patient recruitment is underway for the quantitative component, with results expected in late 2023. DISCUSSION: These results will help HCPs understand patient perspectives on the effectiveness of vortioxetine versus other monotherapy antidepressants in alleviating symptoms of MDD and improvements in QoL. Data from the PLM platform will support a patient goal-based treatment approach, as results can be shared by patients with their HCPs, providing them with insights on patient-centric goals, treatment management and adherence, as well as allowing them to observe changes in patient-related outcomes scores. Findings from the study will also help to optimize the PLM platform to build scalable solutions and connectivity within the community to better serve patients with MDD.