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Amantadine has begun to be used as a possible alternative in COVID-19 therapy to mitigate its effects. There is anecdotal evidence that patients with Parkinson's disease (PD) treated with amantadine and who test positive for COVID-19 often do not develop clinical manifestations of COVID-19. Objective(s): to compare the clinical course of COVID-19 in patients with PD who took or did not take amantadine sulfate. Patients and methods. A prospective continuous study included 142 patients with PD who were treated in Republican Clinical Diagnostic Center for Extrapyramidal Pathology and Botulinum Therapy in Kazan from October 2021 to January 2022. Patients filled out a proprietary internally developed questionnaire. Results and discussion. Out of 142 individuals with PD COVID-19 occurred in 77 (54.2%), of which 52.0% had a mild course, 39.0% had a moderate course, 2.6% had a severe course, and in 6.5% the severity of the disease has not been established. Deterioration after COVID-19 infection was noted by 36% of patients: the appearance or increase in motor fluctuations (41%), increased tremor, stiffness or slowness (31%), the appearance of "exhaustion" of the effect of a single dose of levodopa (13%), the appearance or increased dyskinesia (21%), hallucinations (3.5%). Patients taking amantadine sulfate had PD much longer (11.5+/-5.62 years versus 5.12+/-3.24 years) and had a more pronounced (III-IV) stage of the disease. These patients were more likely to experience mild COVID-19 (in 60.87% of cases), in contrast to patients not receiving amantadine sulfate (only in 48.15% of cases). There was no correlation between the severity of COVID-19 and levodopa intake. Conclusion. The results of the study showed that patients with PD taking amantadine sulfate are more likely to have a mild course of COVID-19.Copyright © 2022 Ima-Press Publishing House. All rights reserved.
ABSTRACT
Amantadine has begun to be used as a possible alternative in COVID-19 therapy to mitigate its effects. There is anecdotal evidence that patients with Parkinson's disease (PD) treated with amantadine and who test positive for COVID-19 often do not develop clinical manifestations of COVID-19. Objective(s): to compare the clinical course of COVID-19 in patients with PD who took or did not take amantadine sulfate. Patients and methods. A prospective continuous study included 142 patients with PD who were treated in Republican Clinical Diagnostic Center for Extrapyramidal Pathology and Botulinum Therapy in Kazan from October 2021 to January 2022. Patients filled out a proprietary internally developed questionnaire. Results and discussion. Out of 142 individuals with PD COVID-19 occurred in 77 (54.2%), of which 52.0% had a mild course, 39.0% had a moderate course, 2.6% had a severe course, and in 6.5% the severity of the disease has not been established. Deterioration after COVID-19 infection was noted by 36% of patients: the appearance or increase in motor fluctuations (41%), increased tremor, stiffness or slowness (31%), the appearance of "exhaustion" of the effect of a single dose of levodopa (13%), the appearance or increased dyskinesia (21%), hallucinations (3.5%). Patients taking amantadine sulfate had PD much longer (11.5+/-5.62 years versus 5.12+/-3.24 years) and had a more pronounced (III-IV) stage of the disease. These patients were more likely to experience mild COVID-19 (in 60.87% of cases), in contrast to patients not receiving amantadine sulfate (only in 48.15% of cases). There was no correlation between the severity of COVID-19 and levodopa intake. Conclusion. The results of the study showed that patients with PD taking amantadine sulfate are more likely to have a mild course of COVID-19.Copyright © 2022 Ima-Press Publishing House. All rights reserved.
ABSTRACT
Amantadine has begun to be used as a possible alternative in COVID-19 therapy to mitigate its effects. There is anecdotal evidence that patients with Parkinson's disease (PD) treated with amantadine and who test positive for COVID-19 often do not develop clinical manifestations of COVID-19. Objective(s): to compare the clinical course of COVID-19 in patients with PD who took or did not take amantadine sulfate. Patients and methods. A prospective continuous study included 142 patients with PD who were treated in Republican Clinical Diagnostic Center for Extrapyramidal Pathology and Botulinum Therapy in Kazan from October 2021 to January 2022. Patients filled out a proprietary internally developed questionnaire. Results and discussion. Out of 142 individuals with PD COVID-19 occurred in 77 (54.2%), of which 52.0% had a mild course, 39.0% had a moderate course, 2.6% had a severe course, and in 6.5% the severity of the disease has not been established. Deterioration after COVID-19 infection was noted by 36% of patients: the appearance or increase in motor fluctuations (41%), increased tremor, stiffness or slowness (31%), the appearance of "exhaustion" of the effect of a single dose of levodopa (13%), the appearance or increased dyskinesia (21%), hallucinations (3.5%). Patients taking amantadine sulfate had PD much longer (11.5+/-5.62 years versus 5.12+/-3.24 years) and had a more pronounced (III-IV) stage of the disease. These patients were more likely to experience mild COVID-19 (in 60.87% of cases), in contrast to patients not receiving amantadine sulfate (only in 48.15% of cases). There was no correlation between the severity of COVID-19 and levodopa intake. Conclusion. The results of the study showed that patients with PD taking amantadine sulfate are more likely to have a mild course of COVID-19.Copyright © 2022 Ima-Press Publishing House. All rights reserved.
ABSTRACT
Purpose: Rehabilitation to address modifiable factors associated with chronic hip-related groin pain (CHRGP) may lead to reduced pain and improved function, yet little is known about its effectiveness. We assessed the preliminary effects of two interventions that target two distinct mechanisms, sensory disturbances and abnormal movement patterns. Sensory disturbances such as peripheral and central sensitization may contribute to pain persistence long after initial injury. Joint mobilization (JtMob) may impart a neurophysiological response within the nervous system that results in pain reduction and improved mobility. Abnormal movement patterns may create altered mechanical stresses on hip joint structures, resulting in pain and activity limitations. Movement pattern training (MoveTrain) may improve movement patterns and thus patient function. Method(s): Patients with CHRGP, 18-40, were enrolled. Assessments included self-report questionnaires, clinical exam, and quantitative sensory testing. Outcomes included the Hip disability and Osteoarthritis Outcome Score (HOOS), a patient-reported outcome;frontal plane kinematics of hip, pelvis, and trunk during single leg squat;and pain pressure threshold (PPT) assessed at the anterior groin of the most bothersome hip and dominant thenar eminence (local and generalized pressure hypersensitivity, respectively). Patients were randomized to JtMob or MoveTrain in a 1:1 ratio stratified by sex and HOOS Symptoms. Treatment for both groups included 10 individualized visits over 12 weeks with a trained physical therapist (PT);assessment of patient goals and education which focused on patient-specific tasks reported by the patient to be symptom-producing;instruction in a home exercise program (HEP);and handouts that provided education, description and benefits of assigned treatment and instructions for HEP. The key element of JtMob was PT-provided manual techniques using specific criteria to determine the joint mobilization techniques and parameters used for each patient. The patient's symptom report to each technique was monitored and if indicated, the technique modified according to our outlined procedures. The HEP included flexibility exercises. The key element of MoveTrain was task-specific instruction to correct abnormal movement patterns displayed during daily and patient-specific tasks. For example, hip adduction was minimized during a step descent. The HEP included repeated practice of modified tasks. Task difficulty was progressed based on each patient's performance. Immediately after treatment completion, patients returned for follow up assessment. To assess treatment sustainability after the active treatment phase, we collected HOOS at 6 and 12 months (extended follow-up), and kinematics and PPT at 12 months. Data from patients who provided any data after baseline were analyzed with a repeated measures analysis of variance (RM-ANOVA) with baseline value as a covariate, patient as a random effect, and an autoregressive covariance structure. After adjusting for baseline, the between-group difference in change from post-treatment to each extended follow-up results from pre-planned statistical contrasts in a RM-ANOVA that includes main effects for treatment group, visit and the group by visit interaction. The within-group treatment effect at each extended follow-up was calculated by subtracting the earlier time point from the later follow-up within each treatment group. Dependent samples t-tests were used to assess the degree of within-group change. Result(s): Demographics and outcome data are provided in Tables 1 and 2, respectively. Thirty-three patients with CHRGP were randomized and 29 (88%) provided post-treatment data. Four patients did not complete treatment or post-treatment testing (3 due to COVID pandemic, 1 lost to follow up);6 patients did not complete 12 month laboratory testing (due to pandemic), but did complete 12 month questionnaires. Previously, we reported that both groups reported clinically important improvements in HOOS subscales and MoveTrain group improved hip and pelvis kinematics immediately after treatment compared to baseline. After adjusting for baseline, there were no between-group differences in change in outcomes between post-treatment and extended follow-up when comparing JtMob and MoveTrain, indicating that treatment effects immediately post-treatment were maintained at 12 months after treatment completion. Conclusion(s): Our preliminary findings suggest that 12 weeks of JtMob or MoveTrain, may result in improvements in patient-reported pain and function and these effects may persist 12 months after treatment completion. A future, larger trial to definitively assess the efficacy of JtMob and MoveTrain and identify factors associated with long-term outcomes will improve our ability to develop treatment strategies for people with CHRGP. [Formula presented] [Formula presented]Copyright © 2023
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Objective: Hypokinetic movement disorder and parkinsonian picture has been well described in literature following covid-19 but hyperkinetic MDS are very in global literatures. To investigate the epidemiology,clinical picture,the diagnostic and therapeutic challenges in patients hyperkinetic MDS in this context and to know the time schedule of the onset of the MDS with exploring the possible pathogenesis Background: Infections are up to 20% of movement disorders.The most frequent agents are beta-hemolytic streptococcus,and flavivirus causing Japanese encephalitisThe role of the viral stimulation of microglial activation in neuroinflammation has regained attention in the context of covid19 Methods: Patients of MDS attended the clinic from 31st march 2020 to March 2022,with recent onset of hyperkinetic movements were screened. Subjects had medical history either prior to the study or medical history reviewed by physicians suggestive of covid.PCR +VE or Presence of covid antibody in blood or csf in patients with recent onset hyperkinetic MDS within 6-12 weeks of onset of symptoms except.Ventilatory cases Other markers were used to rule out other viral infections causing MDS.MRI brain and EEG as a routine in all Immune markers in very selected cases in suspected immuomediated MDSThe attempted treatment were symptomatic and immunotherapy Results: In last 2 years 50 cases of new onset Hyperkinetic MDS are recorded, out of which only 9 cases were directly or indirectly linked to Covid,Nystagmus, orofacial dyskinesia and segmental or generalized myoclonus and ataxic gait associated delirium,tremors and ocular movement disorders along with epileptic seizures are also seen.Positive EEG findings are in the form of diffused bihemispheric slowing or periodic complexes with polyspikes at irregular interval and delta brush in few cases .MRI findings varied between non-specific changes to bitemporoparietal hyperintensities in flair and T2 both cortical and subcortical or bilateral basal ganglia. Treatment response in all the cases are statisfactory Conclusion(s): observational study revealed MDS in covid do happen Myoclonus is the most Frequent movement disorder associated with COVID-19 followed by dystonia and tremors .pathophysiology included neuro inflammation, autoimmune mechanisms and small vessels thrombosis hence not be co-incidental , response to steroid also s/o immune mediated.
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BACKGROUND: The COVID-19 pandemic has spread across the world, leading to government measures associated with a negative impact on mental health. The aim of this study was to evaluate the impact of the pandemic on depression, anxiety and resilience in Dutch people with cystic fibrosis (PwCF) or primary ciliary dyskinesia (PwPCD) and their caregivers. METHODS: Adolescents (12-17 years) and caregivers of children (0-17 years) with CF, and adolescents, adults and caregivers of children with PCD completed questionnaires on depression, anxiety and resilience between September 2020 and February 2021. The psychosocial impact of COVID-19 was measured by the Exposure and Family Impact Survey (CEFIS) Part 2. Mixed model analyses compared depression and anxiety results to participants' prepandemic scores. RESULTS: One hundred ten participants (10 PwCF, 31 PwPCD, 52 CF caregivers, 17 PCD caregivers) completed questionnaires during the pandemic. Prepandemic outcomes were available for 87 participants. The prevalence of symptoms of depression and anxiety (PHQ-9 or GAD-7 scores ≥5) in PwCF and PwPCD and their caregivers before and during the pandemic was high, with an increase in depression in PwCF (2.75; 95% confidence interval: 0.82-4.68) and increase in anxiety in CF caregivers (1.03; 0.09-1.96) during the pandemic. Resilience was within the normal range for all groups, CEFIS scores corresponded to a low to normal impact. CONCLUSION: PwCF and PwPCD and their caregivers were at risk of elevated depression and anxiety symptoms both before and during the pandemic, which emphasizes the importance of mental health screening and psychological care in CF and PCD.
Subject(s)
COVID-19 , Ciliary Motility Disorders , Cystic Fibrosis , Adult , Child , Adolescent , Humans , Caregivers/psychology , COVID-19/epidemiology , COVID-19/complications , Depression/epidemiology , Depression/etiology , Cystic Fibrosis/epidemiology , Pandemics , Anxiety/epidemiology , Anxiety/etiology , Anxiety/psychology , Ciliary Motility Disorders/complicationsABSTRACT
Background: There is little data on SARS-CoV-2 infections in people with rare diseases. We studied incidence and severity of SARS-CoV-2 in people with primary ciliary dyskinesia (PCD). Method(s): We used data from COVID-PCD, an international participatory study including people with PCD, which started recruitment on 30.05.2020. Participants completed weekly online questionnaires on SARS-CoV-2 infections and symptoms. We studied severity of infections reported at baseline or during follow-up while we calculated incidence rates including only infections reported during follow-up. We used Cox proportional hazard regression to study predictors of getting infected. Result(s): By January 23, 2022, 726 people participated (40% male, median age 27 years;range 0-85). 90% of persons above 14 years have been vaccinated against COVID-19 and most (93%) wore facemasks in public. Only 62 (8.5%) had a confirmed SARS-CoV-2 infection. Severity of disease was mainly mild;11 (18%) were asymptomatic, 47 (76%) had symptoms among whom 4 (6%) were hospitalized (none in the ICU, nobody died). Severity of disease was not associated with age, sex, co-morbidity or vaccination. We had follow-up data from 651 (90%). During 633 person-years of follow-up (median 59 weeks per person), 43 incident SARS-CoV-2 infections were reported (incidence rate 6.9 per 100 person years;95% CI 5.2-9.2). Children (0-14 years) had a higher risk of infection (hazard ratio 3.0;95% CI 1.3-6.8) compared to 15-49 year-olds. Conclusion(s): SARS-CoV-2 incidence rates remained low and severity mainly mild in people with PCD, probably reflecting high vaccination rate and personal protective behaviour.
ABSTRACT
Objective Mycobacterium tuberculosis is an immobile aerobic bacillus that causes tuberculosis (TB) disease. We aimed to evaluate the association between coronavirus disease 2019 (COVID-19), COVID-19-related drugs, TB reactivation, and TB incidence during the pandemic. Methods Eight patients who were diagnosed as having TB in Meram Medical Faculty, Necmettin Erbakan University between March 1, 2020, and December 31, 2021, at the beginning of the pandemic, were enrolled in this study. The presence of COVID-19 infection was confirmed using COVID-19 antibody tests and the patients' COVID-19 history. We evaluated the demographic data, laboratory findings, imaging tests, and pathology results of all patients. Results We checked all our patients with TB using COVID-19 antibodies (immunoglobulin [Ig]G + IgM) or polymerase chain reaction. Seven of the eight patients were female (87.5%). The median age was 16 years. Family screening of all patients was negative, and they had bacillus Calmette-Guerin vaccine scars. Two patients had chronic diseases. One was diagnosed as having primary ciliary dyskinesia in our department (patient no. 8) and the second was under follow-up by the rheumatology department with a diagnosis of juvenile idiopathic rheumatoid arthritis. Conclusion There has been an increase in the incidence of TB in children, especially in adolescents, during the pandemic period. This may be due to the pathogenic structure of the COVID-19 virus with an unknown mechanism. In addition, lifestyle changes and changes in health care policies during the pandemic may have caused this. Further research should be performed on this topic.Copyright © 2023 Authors. All rights reserved.
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Introduction: During the COVID-19 pandemic, the lifestyle and sleep habits of children with chronic lung disease have changed. Aims and objectives: To evaluate the differences in sleep habits in the first year of the pandemic in children with cystic fibrosis (CF) and primary ciliary dyskinesia (PCD). Method(s): Primary caregivers of children with CF and PCD aged 3-16 years who were evaluated for sleep habits at the beginning of the pandemic were re-evaluated at the end of the first year of the pandemic. The Sleep Disturbance Scale for Children (SDSC) was used and questions were asked about sleep habits and weight changes during the first year of the pandemic. Result(s): Primary caregivers of 31 children with CF and 14 children with PCD were included in the study. The median age of the children were 10.0 (7.5-12.0) years, 42.2% of the children were female. The mean BMI of children with CF was 15.8+/-1.8, and 20.0+/-3.5 in children with PCD (p:0.001). The mean daily screen time was 2h (1-3) at the beginning and 5h (4-6) in the first year of the pandemic among children with CF, 2h (1-2.2) at the beginning and 5h (4.7-6) in the first year of the pandemic among children with PCD (p<0.001, p:0.001, respectively). There were no differences in terms of disorders of initiating and maintaining sleep, sleep breathing disorders, disorders of arousal, sleep-wake transition disorders, disorders of excessive somnolence, sleep hyperhidrosis scores between two groups during first year of pandemic. Conclusion(s): While daily screen time increased in children with CF and PCD, sleep disturbances and changes in daily habits continued in the first year of the pandemic.
ABSTRACT
Background: In the past, few patients with primary ciliary dyskinesia (PCD) were diagnosed with the test combination recommended by guidelines (nasal nitric oxide (nNO), genetic testing, and biopsy for electron or video microscopy) [Halbeisen, ERJ, 2019]. In a large international participatory study of people with PCD, we assessed the current situation. Method(s): We used data from COVID-PCD, an international study of people with PCD, who participated between 2020 and 2022. Participants described their diagnostic tests in an online questionnaire, and we used logistic regression to identify explanatory factors. Result(s): 728 participated (median age 27 years, IQR: 12-43;60% female). Among them, 92% reported that any diagnostic testing had been done: 49% nNO, 59% genetics, and 75% biopsy for electron or video microscopy. Most did not know whether the sample had been analysed with TEM or video microscopy. Biopsy was most frequent in all countries except in North America where genetic testing predominated. Only 36% of participants reported all three tests. This proportion was highest in Germany (61%) and lowest in Australia (19%). Recently diagnosed patients reported more tests (nNO OR 1.7, 95%CI 1.1-2.6, genetics OR 4.5, 95%CI 2.9-6.9), and those with situs inversus less (nNO OR 0.5, 95%CI 0.3-0.7, biopsy OR 0.4, 95%CI 0.3-0.7, genetics OR 0.7, 95%CI 0.5-0.97). Conclusion(s): Diagnostic testing in people with PCD differed by country and few reported having undergone all recommended tests. Patients diagnosed long ago should be recalled for supplementary testing to improve diagnostic characterisation as a prerequisite for personalised medicine.
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Objective To demonstrate a case of suspected post-vaccine autoimmune encephalitis associated with leucine-rich glioma-inactivated protein (LGI1) antibodies with significant clinical improvement after initiation of immunotherapy nearly a year after symptom onset. Background Although the autoimmune encephalitides have overlap in presentation, some have unique manifestations (such as orofacial dyskinesias seen with NMDA encephalitis). These unique associations can serve as a clinical marker of response to treatment and even allow for earlier initiation of immunotherapy while awaiting results from antibody testing. LGI1 encephalitis characteristically presents with faciobrachial dystonic seizures (FBDS) that are refractory to anti-seizure medications (ASMs) but responsive to immunotherapy. Design/Methods Case report Results A previously healthy and highly independent 89-year-old woman developed what she described as abnormal posturing and spasms of the right shoulder two to three weeks after receiving the J&J COVID-19 vaccine. The abnormal movements progressed to involve the right side of her face and were refractory to multiple ASMs. EEG captured multiple events without epileptiform correlate. Several months later she developed paranoia, delusions, and hallucinations. Autoimmune encephalopathy panel returned positive for the LGI1-antibody around nine months after the onset of FBDS. Upon our initial exam, she had a fluctuating level of arousal, impaired recall of recent events, and was tangential in conversation. There were frequent, brief, repetitive, dystonic movements of the right side of the face consistent with FBDS. Admission was arranged for immunotherapy (intravenous methylprednisolone and intravenous immunoglobulin). Upon follow-up four weeks later, there was significant improvement in arousal and concentration with resolution of FBDS and delusions. Conclusions This case highlights a classic case of LGI1 encephalitis after vaccination presenting with FBDS and progressive cognitive changes. Despite immunotherapy being delayed, there was marked clinical improvement. It is important to recognize this entity and that it typically has a favorable outcome.
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Case Diagnosis: A patient presenting with right shoulder pain and weakness after COVID-19 vaccination is found to have Parsonage-Turner syndrome (PTS) of the spinal accessory nerve. Case Description or Program Description: An 18-year-old male patient with no significant medical history presented to the Physiatry clinic for evaluation of right shoulder pain and protrusion of his right scapula. He denied any trauma or known inciting events. He received his two doses of the COVID-19 vaccine on the contralateral deltoid one month and one week prior. Two days after the 2nd dose, he woke up with 8/10 pain in his right shoulder and displayed right scapular protrusion. He also had self-limiting chills and myalgia. His pain improved, but the scapular protrusion persisted. On examination, there was right trapezius atrophy, right scapula lateral winging, and dyskinesis of right scapulothoracic motion. Right shoulder shrug strength was 4/5, but upper extremity strength otherwise remained 5/5 bilaterally. Electrodiagnostic studies approximately 1 month after symptom onset revealed an acute spinal accessory nerve lesion with ongoing denervation potentials in the superior portion of the mid trapezius muscle. Setting(s): Outpatient Physiatry clinic in Northeast health system. Assessment/Results: The patient's clinical presentation, history, and electrodiagnostic findings were consistent with Parsonage-Turner syndrome of the right spinal accessory nerve. One month after onset, his pain resolved, but he had residual right shoulder shrug weakness and right trapezius atrophy. He had not yet started physical therapy at the time of follow-up. Discussion (relevance): This is the first reported case, to our knowledge, of Parsonage-Turner syndrome resulting in spinal accessory nerve palsy from COVID- 19 vaccination. Conclusion(s): While the risk of complications, such as Parsonage-Turner syndrome, remains rare with COVID-19 vaccination, it is important to be mindful of vaccination history in patients with unexplained neurological injuries. However, data continues to show that the risk of complications of COVID-19 infection greatly exceed those of the vaccine.
ABSTRACT
Introduction In the past, only few patients with primary ciliary dyskinesia (PCD) were diagnosed with the test combination recommended by guidelines (nasal nitric oxide (nNO), genetic testing, and biopsy for electron or video microscopy) [Halbeisen, ERJ, 2019]. In a large international participatory study of people with PCD, we assessed the current situation. Methods We used data from COVID-PCD, an international study of people with PCD, who participated between 2020 and 2022. Participants described their diagnostic tests in an online questionnaire, and we used logistic regression to identify explanatory factors. Results 728 participated (median age 27 years, IQR: 12-43;60% female). Among them, 92% reported that any diagnostic testing had been done: 49% nNO, 59% genetics, and 75% biopsy for electron or video microscopy. Most did not know whether the biopsy sample had been analysed with transmission electron microscopy or video microscopy. Biopsy was most frequent in all countries except in North America where genetic testing predominated. Only 36% of participants reported all three tests. This proportion was highest in Germany (61%) and lowest in Australia (19%). Recently diagnosed patients reported more tests (nNO OR 1.7, 95%CI 1.1-2.6, genetics OR 4.5, 95%CI 2.9-6.9), and those with situs inversus less (nNO OR 0.5, 95%CI 0.3-0.7, biopsy OR 0.4, 95%CI 0.3-0.7, genetics OR 0.7, 95%CI 0.5-0.97). Conclusion Diagnostic testing in people with PCD differed by country and few reported having undergone all recommended tests. Patients diagnosed long ago should be recalled for supplementary testing to improve diagnostic characterisation as a prerequisite for personalised medicine.
ABSTRACT
Introduction After two years of COVID-19 pandemic, there is still little data on incidence and severity of SARS-CoV-2 infections in people with primary ciliary dyskinesia (PCD). We aimed to study incidence of SARS-CoV-2, severity of disease vaccination status, and social contact behaviour in people with PCD and study factors associated with risk of infection and risk of severe disease. Method COVID-PCD is an international participatory cohort study which started recruitment on 30.05.2020. Participants completed weekly online questionnaires on SARS-CoV-2 infections and symptoms. We studied severity of infections reported at baseline or during follow-up while we calculated incidence rates including only infections reported during followup. We studied factors associated with risk of infection using Poisson regression. Results By 10.05.2022, 728 people with PCD participated (40% male, median age 27 years;range 0-85). 90% of persons above 14 years were vaccinated against COVID-19 and most (93%) wore facemasks in public. In total, 87 (11.7%) reported a SARS-CoV-2 infection. We had follow-up data from 664 persons (90%) and during 716 person-years (median 61 weeks per person), 62 incident SARS-CoV-2 infections were reported (incidence rate 8.7 per 100 person years;95%CI 6.8- 11). Risk of infection was lower in adults compared to children (IRR: 0.39, 95%CI 0.20-0.77), higher in the United Kingdom compared to other countries (IRR: 1.85, 95%CI 1.08-3.19), and higher between Sep 2021 - May 2022 compared to MarNov 2020 (IRR: 1.20, 95%CI 1.05-1.38). Severity of disease was mainly mild;12 (14%) were asymptomatic, 75 (86%) had symptoms among whom 4 were hospitalized (none in the ICU, nobody died). Severity was not associated with age sex, co-morbidity, or vaccination. Conclusion SARS-CoV-2 incidence rates remained low and severity mainly mild in people with PCD, probably reflecting high vaccination rate and personal protective behaviour.
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The proceedings contain 85 papers. The topics discussed include: T2-high asthma across all ages - comparative analysis in children and adults from the ALLIANCE cohort;targeting IL-6 to prevent vascular and bronchial remodeling in an experimental model of bronchopulmonary dysplasia;diagnostic testing in people with primary ciliary dyskinesia around the world: where do we stand?;effects of elexacaftor/tezacaftor/ivacaftor in children with cystic fibrosis: a comprehensive assessment using spirometry, lung-clearance-index, functional and structural lung MRI;cough phenotypes in children: findings from the Swiss Pediatric Airway Cohort;pleuropneumonia caused byNocardia cyriacigeorgica in a 14-year-old girl with PCD;in severe juvenile-onset recurrent respiratory papillomatosis of a 10-year-old, systemic bevacizumab is highly effective and well tolerated;and impact of COVID-19 related alterations in circulating respiratory viruses on children and adult patients with recurrent wheeze and asthma.
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Primary ciliary dyskinesia (PCD) is an incurable, rare, inherited, chronic condition. Treatment includes the regular clearing of airway mucus, aggressive treatment of infections and management of hearing loss. Caregiver burden has not been explored, hence we interviewed 18 mothers and 6 fathers of children under 6 years to understand the impact of diagnostic testing and implications of a positive diagnosis. Interviews were transcribed and thematically analysed and five key themes were identified. These included the parents' experiences following child's diagnosis, impact of child's treatment regimen on parent, impact of child's health status on parent, parent's coping strategies, and parental concerns for the future. Parents described their diagnostic journey, with the findings revealing how a lack of awareness among clinicians of the PCD symptom pattern can lead to a delayed diagnosis. Parents discussed the emotional and practical impact of a PCD diagnosis and the coping strategies employed to deal with challenges arising following a diagnosis. Parents use a variety of different lifestyle changes to accommodate their child's treatment regimen and to cope with disruptive life events such as the COVID-19 pandemic. This study provides valuable insights into parental adjustment and adaptation to a PCD diagnosis and management regimen. Going forward, this research highlights the need for integrated social care for PCD patients and their families.
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Objective: We aimed to assess whether SARS-CoV2 vaccines have any positive or negative impact on motor symptoms in PD patients. Background: Studies focusing on the relationship between SARSCoV- 2, COVID-19 and PD have provided conflicting results (1). Recently, few cases of severe dyskinesia after receiving BNT162b2 mRNA vaccine have been reported but there is no data about impact of vaccines on motor symptoms in larger series of PD patients (2). Methods: We reviewed the charts of the last two months of consecutive PD patients who were attended monthly by telemedicine during the pandemic and who had received one or two doses of any of the SARSCoV- 2 vaccines available in Peru (BNT162b2, Pfizer/BioNTech and BBIBP-CorV, Sinopharm). We specifically searched for any reported variation on motor symptoms including dyskinesia during a period of at least three days after any of each dose. Results: One hundred eighty-one PD patients met inclusion criteria. 107 males and 74 females were included. Mean age was 65 years old (range 31-99). 178 patients received two doses of SARSCoV2 vaccine (177 Pfizer/BioNTech and 1 Sinopharm respectively) and three patients received only one dose of Pfizer/BioNTech vaccine. Eleven patients (6%) had COVID19 infection during the pandemic. The effect of the infection on parkinsonian symptoms was not evaluated in this report. Only two patients (1.1%) reported some degree of exacerbation following one of the dose of the vaccine. First one presented with increased rigidity and gait impairment soon after the first dose and the second case presented with increased resting tremor that lasted for two weeks also after the first dose. In both cases exacerbation improved spontaneously. Conclusion: The approved mRNA-based vaccines and viral vector vaccines are not expected to interact with the neurodegenerative process nor modify motor symptoms in PD. SARS-CoV-2 vaccines are not known neither to interfere with the current therapies for PD. Some patients have developed exacerbation of motor symptoms or severe dyskinesia after vaccination and the reasons remain unclear but they might be explained by triggering a systemic inflammatory response, by stress or excessive anxiety or due to modification of habitual medication response. These very low incidence should not discourage patients to receive vaccines and we recommend COVID-19 vaccination with approved vaccines for persons with PD, unless there is a specific contraindication.
ABSTRACT
Objective: To highlight the importance of caregivers based on results from TeleSCOPE, a real-world study of telehealth during COVID-19 in patients with tardive dyskinesia (TD) and other drug-induced movement disorders (DIMDs). Background: Given the importance of engaging caregivers (family members or other persons of support) when treating patients with TD [1], TeleSCOPE included items related to the effects of caregiver presence during virtual visits. neurology (Neuro) and psychiatry (Psych) physicians and advanced practice providers who met the following criteria: ≥3 years of practice with ≥70% of time spent in clinic;prescribed a vesicular monoamine transporter two inhibitor or benztropine for DIMD at least once in the past six months;and conducted telehealth visits with ≥15% of their patients from Dec-2020 to Jan-2021. Participants responded to items regarding DIMD assessment and management, including the impact of caregivers in these areas. Results: 277 clinicians responded (Neuro = 109, Psych = 168). For both specialties, caregiver participation was greater in video versus phone-only visits (Neuro = 51% vs 37%, Psych = 29% vs 15%). Any mention of tics/ movements by caregivers was the top prompt for further DIMD evaluation (Neuro = 82%, Psych = 89%), followed by trouble with gait/falls/walking/ standing (Neuro = 77%, Psych = 85%) and difficulty swallowing/eating (Neuro = 69%, Psych = 78%). Furthermore, patients without a participating caregiver had the highest risk of a missed DIMD diagnosis (Neuro = 89%, Psych = 83%). Other at-risk patients were lower functioning (Neuro = 86%, Psych = 80%), primarily lived in a group home (Neuro = 68%, Psych = 37%), or were new to the practice (Neuro = 28%, Psych = 51%). Conclusion: Although caregivers were not often present during telehealth visits (especially phone-only visits), active caregiver participation alleviated some of the challenges of virtual DIMD assessment. Caregiver mention of tics/movements or physical impact increased the likelihood of DIMD evaluation and reduced the risk of missed diagnosis. In-person visits remain the gold standard for assessing and treating DIMDs. However, when telehealth is necessary, caregivers can significantly improve the quality of virtual visits. Given this potential for improved outcomes, the role of caregivers in DIMD management merits more research and support.