Long COVID Citizen Scientists – Developing a needs-based research agenda by persons affected by Long COVID

ObjectivesTo identify research priorities of people with Long COVID.DesignCitizen science study following an iterative process of patient needs identification, evaluation and prioritization. A Long COVID Citizen Science Board and a Long COVID Working Group were formed.SettingOnline participation with four activities: three remote meetings and one online survey. First, board members identified needs and research questions. Second, working group members and persons affected by Long COVID evaluated the research questions on a 1-5 Likert scale using an online survey. Then the board gave feedback on this evaluation. Finally, board members set the priorities for research through voting and discussion.Participants28 Long COVID Citizen Science Board members: 21 with Long COVID, and 7 with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). 30 Long COVID Working Group members: 25 with Long COVID, 4 ME/CFS patients, and 1 relative. 241 online survey respondents: 85.5% with Long COVID, 14.5% ME/CFS patients, and 7.1% relatives.Main outcome measuresPrioritization of Long COVID-related research questions.Results68 research questions were generated by the board and categorized into four research domains (medicine, health care services, socio-economics, and burden of disease) and 14 subcategories. Their average importance ratings were moderate to high and varied from 3.41 (SD = 1.16) for sex-specific diagnostics to 4.86 (SD = 0.41) for medical questions on treatment. Five topics were prioritised: “treatment, rehabilitation and chronic care management”, “availability of interfaces for treatment continuity”, “availability of healthcare structures”, “awareness and knowledge among professionals”, and “prevalence of Long COVID in children and adolescents”.ConclusionsTo our knowledge, this is the first study developing a citizen-driven, explicitly patient-centred research agenda with persons affected by Long COVID, setting it apart from existing multi-stakeholder efforts. The identified priorities could guide future research and funding allocation. Our methodology establishes a framework for citizen-driven research agendas, suitable for transfer to other diseases.What is already known on this topicLong-term health consequences following acute SARS-CoV-2 infection, referred to as post COVID-19 condition by WHO or as Long COVID by affected people, are increasing, with population-based prevalence estimates for adults at around 20%.Long COVID is associated with fatigue, shortness of breath, cognitive impairment, sleep disorders, pain and other health problems.There is little evidence about the needs of persons affected by Long COVID, and it is not clear which research questions should be prioritized to address these needs and help patients and their clinicians make informed and shared decisions about their care.What this study addsResearch priorities most important to persons affected by Long COVID are “treatment, rehabilitation and chronic care management”, “availability of interfaces for treatment continuity”, “availability of healthcare structures”, “awareness and knowledge among professionals”, and “prevalence of Long COVID in children and adolescents”.Our study may serve as model for a new framework for patient-centred citizen-driven research agendas and as guidance for funding bodies.

Telehealth for Medication for Opioid Use Disorder Treatment

Medication for Opioid Use Disorder (mOUD), a type of Medications for Addiction Treatment (MAT), has proven to be the most efficacious and cost-effective treatment for individuals suffering from opioid use disorder (OUD). Early initiation of mOUD has been shown to increase retention in addiction treatment. Models of care integrating telehealth with mOUD offer the potential to implement mOUD in point-of-care settings, achieving effective tertiary prevention. Integrating telehealth and mOUD also addresses barriers to addiction treatment continuity, like transportation concerns and stigma. Funding for use of telehealth for addiction treatment is achieved primarily through government grants and insurance reimbursements. There are many legal constructs regarding the dissemination of mOUD, and while not usually permitted, guidelines during the COVID-19 pandemic have allowed for practitioners to be able to prescribe mOUD via telehealth without the requirement of an initial in-person examination.

Trends of Mental Disorders and Treatment Continuity Predictors of New Patients in the Paediatric Psychiatry Clinic of a University Hospital

This study analysed trends of first-time patients visiting the paediatric psychiatry clinic in a university hospital. The medical records from 2009 to 2016 of first-time patients visiting the Kyung Hee University Hospital were reviewed, focusing on children in grades 1–12. We analysed the clinical diagnosis rate of mental disorders per 100,000 in the general population by gender and grade, and the characteristics of patients who sought outpatient care more than three times. The study included 1467 participants, of which 931 were males (63.5%). The number of male patients per 100,000 population significantly decreased from 4.14 in 2009 to 2.03 in 2016. While hyperkinetic disorders had the highest prevalence in males, neurotic disorders were most frequent in females. The rate of disruptive behaviour disorders in males and mental retardation in females decreased significantly during the data collecting period. The factors affecting treatment continuity were being female, 7th–12th graders, and diagnosis of depressive, hyperkinetic, and tic disorders. Physicians should consider the new paediatric patients’ gender, grade, and expected diagnosis from their first visit to improve treatment compliance.

Virtual Online Home-Based Treatment During the COVID-19 Pandemic for Ultra-Orthodox Young Women With Eating Disorders

Background: With the outbreak of the COVID-19 pandemic, the need arose to maintain treatment continuity for religious Jewish Ultra-Orthodox young women with eating disorders (EDs) previously hospitalized in the ED department at the Ultra-Orthodox “Mayanei Hayeshua” medical center in Israel. This need led to the development of home-based online treatment channels, previously unfamiliar, and unaccepted in this population. The implementation of this model had to take into consideration many of the difficulties inherent in the use of online treatment in Jewish Ultra-Orthodox mental health patients.Aims: We sought to investigate our online home-based treatment model implemented during the COVID-19 pandemic in previously hospitalized young Ultra-Orthodox women with EDs.Method: We briefly review the literature on: (1) The Jewish Israeli Ultra-Orthodox culture; (2) Young women in Ultra-Orthodox society; and (3) EDs in Jewish Israeli Ultra-Orthodox women. We then present the inpatient ED department for Ultra-Orthodox young women and describe the online treatment model adapted to this population during the COVID-19 pandemic. We highlight the difficulties, dilemmas, and advantages of our online model with the description of three patients.Findings: Online therapy can serve as a barrier to treatment in some cases, due to physical (lack of suitable online devices except phones), familial (over-crowded families), and religious circumstances, as well as because of the patients' reluctance to take part in this treatment. In other cases, virtual home-based treatment can lead to a positive change. This may be the case in patients who find the distancing online model suitable for them, and in parents who are committed to treatment, using their greater physical and emotional presence at home during the COVID-19 pandemic for the good if their ill-daughters.Discussion: This paper highlights the difficulties and possibilities inherent in a virtual home-based treatment during the COVID-19 pandemic for Ultra-Orthodox young women previously hospitalized because of an ED. This model can be effective for some patients and families if undertaken by a multidisciplinary team that is not only knowledgeable about the treatment of EDs and the use of online strategies but also knowledgeable and culturally sensitive to the specific needs and codes of Ultra-Orthodox populations.

Prevalence of Diagnosis and Treatment Continuity Predictors of New Patients in a Paediatric Psychiatry Clinic

This study analysed trends of first-time patients visiting the paediatric psychiatry clinic in a university hospital. The medical records from 2009 to 2016 of first-time patients visiting the Kyung Hee university hospital were reviewed, focusing on children in grades 1–12. We analysed the prevalence rate of psychiatric disorders per 100,000 general populations by gender and grade, and the characteristics of patients who sought outpatient care more than three times. The study included 1,467 participants, of which 931 were males (63.5%). The number of male patients per 100,000 populations significantly decreased from 4.14 in 2009 to 2.03 in 2016. While hyperkinetic disorders had the highest prevalence in males, neurotic disorders were most frequent in females. Prevalence of disruptive behaviour disorders in males and mental retardations in females decreased significantly during the study period. The factors affecting continuity were being female, studying in grades 7–12, and diagnosis of depressive, hyperkinetic, and tic disorders. Physicians should consider the new paediatric patients’ gender, grade, and expected diagnosis from their first visit to improve treatment compliance.

COVID-19 – Plano de Enfrentamento para Serviços de Terapia Assistida em Doenças Autoimunes

Em função da Pandemia pelo COVID-19, houve a necessidade de elaborar um guia com intuito de nortear as ações dos serviços em funcionamento, buscando a segurança para pacientes em tratamento para doenças autoimunes e equipe de saúde envolvidos na prestação da assistência, sem prejuízo ao controle clínico destas doenças. Elaborar um Plano de enfrentamento e recomendar diretrizes para os Serviços de Terapia Assistida. Foram pesquisadas publicações de saúde pública nacional e internacional, sociedades de especialidades médicas de áreas afins das doenças, que se utilizam de imunomoduladores parenterais para tratamento e publicações nas principais bases de dados virtuais relacionando COVID-19, doenças reumáticas e drogas imunobiológicas. Com base em revisão de dados atuais da literatura, recomendações das principais sociedades de especialidades médicas relacionadas ao tema e agências de saúde pública, foi possível elaborar um plano de contingência para que serviços de terapia assistida para tratamento de doenças autoimunes não sofressem um impacto negativo desnecessário durante a Pandemia de COVID-19, permitindo assim a continuidade de tratamento para pacientes que necessitam uso contínuo de medicações imunomoduladoras parenterais, evitando a piora clínica destes pacientes. Palavras-chave: COVID-19. Doenças Reumáticas. Serviço de Terapia Assistida. Abstract Due to the Covid-19 pandemic, there was a need to prepare a coping plan to guide the services actions in operation, seeking safety for patients undergoing treatment for autoimmune diseases and the health team involved in providing care, without harming to the clinical control of such diseases. To develop a coping plan and recommend guidelines for assisted therapy services. Publications from national and international public health agencies, societies of medical specialties from disease-related areas that use parenteral immunomodulators for treatment and publications in the main virtual databases relating Covid-19, rheumatic diseases and immunobiological drugs were searched. Based on a review of current literature data, recommendations from the main societies of medical specialties related to the theme and public health agencies, it was possible to develop a contingency plan so that assisted therapy services for the autoimmune diseases treatment would not undergo an unnecessary negative effect during the Covid-19 pandemic, thus allowing treatment continuity for patients who need continuous use of parenteral immunomodulatory medications, preventing the clinical worsening of these patients. Keywords: Covid-19. Rheumatic Diseases. Assisted Therapy Services

Pain as clinical manifestations of COVID-19 infection and its management in the pandemic era: a literature review

Coronavirus disease 2019 (COVID-19) is a current global pandemic. The case number has increased since December 31, 2019. It has been reported that COVID-19 patients have been giving pain complaints, one of which is muscular pain. Other types of pain that have also been reported by COVID-19 patients are joint pain, stomach pain, and testicular pain. Neuropathic pain is the rarest case among others. COVID-19 mechanisms in the nerve and musculoskeletal damage are believed to be caused by the expression and distribution of angiotensin-converting enzyme 2 (ACE-2). Patients with pain, especially neuropathic pain, normally do not respond well to various therapies, and experience psychiatric disorders such as depression, which leads to a decrease in the patient’s quality of life. Important considerations for health professionals in terms of pain management during this pandemic include ensuring treatment continuity, painkillers, utilization of telemedicine, biopsychosocial management approach, and modifying therapy needs to reduce the risks of COVID-19 complications.

Challenges in Tuberculosis Clinical Trials in the Face of the COVID-19 Pandemic: A Sponsor’s Perspective

The COVID-19 pandemic has caused unforeseen and extreme changes in societal and health system functioning not previously experienced in most countries in a lifetime. The impact of the pandemic on clinical trials can be especially profound given their complexities and operational requirements. The STREAM Clinical Trial is the largest trial for MDR-TB ever conducted. Currently operating in seven countries, the trial had 126 participants on treatment and 312 additional participants in active follow up as of March 31, 2020. Areas of particular concern during this global emergency include treatment continuity, supply chain management and participant safety monitoring. This commentary highlights some of the challenges faced due to the pandemic and the steps taken to protect the safety of trial participants and the integrity of the trial.