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.

The role of primary care in management of rare diseases in Ireland.

BACKGROUND: 'Slaintecare' aims to address complex patient care needs in an integrated fashion with an emphasis on patient-centred, patient-empowered community care.Currently there is a lack of knowledge of the impact of rare disease management in primary care and of the information tools required by general practitioners to deliver integrated care for rare disease patients. AIMS: To complete a pilot survey to estimate the general practice clinical workload attributable to selected rare diseases and assess the use of relevant information sources. METHODS: A retrospective cross-sectional survey was carried out of general practice consultations (2013-2017) for patients with 22 commonly recognised rare diseases. RESULTS: Around 31 general practitioners from 10 Irish practices completed information on 171 patients with rare diseases over 3707 consultations. General practice-specific coding systems were inadequate for rare disease patient identification. Over 139 (81.3%) patients were adult, and 32 (18.7%) were children. Management of care was hospital and not primary care based in 63%. Those eligible for state-reimbursed care had a significantly higher median number of consultations (23 consultations, IQR = 13-37, or 5.8 consultations/year) than those who paid privately (10 consultations, IQR = 4-19, or 2.5 consultations/year) (p < 0.005).General practitioners had access to public information resources on rare diseases but few had knowledge of (35.5%), or had ever used (12.9%) Orphanet, the international rare disease information portal. CONCLUSIONS: Both specific rare disease-specific coding and use of the relevant rare disease information sources are lacking in general practice in Ireland.

The role of the general dental practitioner in managing the oral care of head and neck oncology patients.

UNLABELLED: The general dental practitioner (GDP) plays a critical role in managing head and neck cancer patients. The first and most important role is to offer preventive services, particularly to smokers and to patients who drink alcohol to excess. It is of critical importance that every patient has a systematic examination of oral soft tissues when seen by a GDP. All patients with suspicious lesions should be referred for urgent attention to a specialist centre. Once oral cancer has been diagnosed, GDPs may be presented with patients requiring urgent dentistry, including extractions before commencement of treatment, requiring palliation of symptoms during treatment, or requiring general dentistry after treatment. Radiotherapy provides increased survival but has serious adverse consequences, which may be lifelong, including dry mouth, radiation caries, limitation of mouth opening and high risk of osteonecrosis after extractions. Extraction of teeth in irradiated bone should be referred to specialist centres. Improving survival rates and an ageing population mean that GDPs will see many more survivors of head and neck cancer in the future, with an increased burden of dental care in the longer-term and an increased need for monitoring and secondary prevention. CLINICAL RELEVANCE: The management of patients with head and neck cancer is complex and involves a multi-disciplinary team, both in the primary treatment but also in the long-term care. This paper reviews the consequences of treatment for head and neck cancer and gives practical advice for GDPs and their team in the long-term care of these patients.

Emergency department utilization after the implementation of Massachusetts health reform.

STUDY OBJECTIVE: Health care reform in Massachusetts improved access to health insurance, but the extent to which reform affected utilization of the emergency department (ED) for conditions potentially amenable to primary care is unclear. Our objective is to determine the relationship between health reform and ED use for low-severity conditions. METHODS: We studied ED visits, using a convenience sample of 11 Massachusetts hospitals for identical 9-month periods before and after health care reform legislation was implemented in 2006. Individuals most affected by the health reform law (the uninsured and low-income populations covered by the publicly subsidized insurance products) were compared with individuals unlikely to be affected by the legislation (those with Medicare or private insurance). Our main outcome measure was the rate of overall and low-severity ED visits for the study population and the comparison population during the period before and after health reform implementation. RESULTS: Total visits increased from 424,878 in 2006 to 442,102 in 2008. Low-severity visits among publicly subsidized or uninsured patients decreased from 43.8% to 41.2% of total visits for that group (difference=2.6%; 95% confidence interval [CI] 2.25% to 2.85%), whereas low-severity visits for privately insured and Medicare patients decreased from 35.7% to 34.9% of total visits for that group (difference=0.8%; 95% CI 0.62% to 0.98%), for a difference in differences of 1.8% (95% CI 1.7% to 1.9%). CONCLUSION: Although overall ED volume continues to increase, Massachusetts health reform was associated with a small but statistically significant decrease in the rate of low-severity visits for those populations most affected by health reform compared with a comparison population of individuals less likely to be affected by the reform. Our findings suggest that access to health insurance is only one of a multitude of factors affecting utilization of the ED.