Faculty Opinions recommendation of Medical Cannabis in Parkinson Disease: Real-Life Patients' Experience.

Background: Dimethylfumarate (DMF) is an orally administered fumaric acid esters (FAE) approved for plaque psoriasis. The most represented adverse event for incidence reported in all studies regarding multiple sclerosis and psoriasis treatment was flushing followed by gastrointestinal and lymphopenia (AEs). We report our experience on effective management strategies in patients with dimethylfumarate fushing induced. Methods: The purpose of our study is addressed to propose feasibles strategies able to mitigate adverse events developing in order to improve therapy compliance. We report our real life experience of 20 patients affected by mild to moderate plaque psoriasis in treatement with DMF 10 male and 10 female, with 45,4 years old mean age underwent to a reducing a daily dosage regimen with DMF from 120 mg to 30 mg tablets. Patients experience flushing around 30-45 minutes after assuming the medication.per day. Results: Patients achieving a good adherence and efficacious results in terms of PASI 75 reduction after 16 weeks of treatment. Conclusion: DMF is efficacious and has a favorable benefit–risk profile, thanks to the possibility of implementing posology strategies in order to optimize adherence to the therapy.

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Cannabis in Parkinson’s Disease: The Patients’ View

Journal of Parkinson s Disease ◽

10.3233/jpd-202260 ◽

2020 ◽

pp. 1-13

Author(s):

Ferhat Yenilmez ◽

Odette Fründt ◽

Ute Hidding ◽

Carsten Buhmann

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Therapeutic Option ◽

Clinical Aspects ◽

Medical Cannabis ◽

Large Cities ◽

Routes Of Administration ◽

Reduction Of Pain ◽

The Difference ◽

Patients Experience

Background: Little is known about the patients’ view on treatment with medical cannabis (MC) for Parkinson’s disease (PD). Objective: To assess the PD community’s perception of MC and patients’ experience with MC. Methods: Applying a questionnaire-based survey, we evaluated general knowledge and interest in MC as well as the frequency, modalities, efficacy, and tolerability of application. Questionnaires were distributed nationwide via the membership journal of the German Parkinson Association and locally in our clinic to control for report bias. Results: Overall, 1.348 questionnaires (1.123 nationwide, 225 local) were analysed. 51% of participants were aware of the legality of MC application, 28% of various routes of administration (ROA) and 9% of the difference between delta9-tetrahydrocannabinol (Δ9-THC) and cannabidiol (CBD). PD-related cannabis use was reported by 8.4% of patients and associated with younger age, living in large cities and better knowledge about the legal and clinical aspects of MC. Reduction of pain and muscle cramps was reported by more than 40% of cannabis users. Stiffness/akinesia, freezing, tremor, depression, anxiety and restless legs syndrome subjectively improved for more than 20% and overall tolerability was good. Improvement of symptoms was reported by 54% of users applying oral CBD and 68% inhaling THC-containing cannabis. Compared to CBD intake, inhalation of THC was more frequently reported to reduce akinesia and stiffness (50.0% vs. 35.4%; p < 0.05). Interest in using MC was reported by 65% of non-users. Conclusion: MC is considered as a therapeutic option by many PD patients. Nevertheless, efficacy and different ROA should further be investigated.

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Smartphone-Based Monitoring of Parkinson Disease: Quasi-Experimental Study to Quantify Hand Tremor Severity and Medication Effectiveness (Preprint)

10.2196/preprints.21543 ◽

2020 ◽

Author(s):

Elina Kuosmanen ◽

Florian Wolling ◽

Julio Vega ◽

Valerii Kan ◽

Yuuki Nishiyama ◽

...

Keyword(s):

Parkinson Disease ◽

Rating Scale ◽

Inertial Sensors ◽

Negative Impact ◽

Wearable Sensors ◽

Real Life ◽

Rank Correlation ◽

Accelerometer Data ◽

Hand Tremor ◽

Significant Difference

BACKGROUND Hand tremor typically has a negative impact on a person’s ability to complete many common daily activities. Previous research has investigated how to quantify hand tremor with smartphones and wearable sensors, mainly under controlled data collection conditions. Solutions for daily real-life settings remain largely underexplored. OBJECTIVE Our objective was to monitor and assess hand tremor severity in patients with Parkinson disease (PD), and to better understand the effects of PD medications in a naturalistic environment. METHODS Using the Welch method, we generated periodograms of accelerometer data and computed signal features to compare patients with varying degrees of PD symptoms. RESULTS We introduced and empirically evaluated the tremor intensity parameter (TIP), an accelerometer-based metric to quantify hand tremor severity in PD using smartphones. There was a statistically significant correlation between the TIP and self-assessed Unified Parkinson Disease Rating Scale (UPDRS) II tremor scores (Kendall rank correlation test: z=30.521, <i>P</i><.001, τ=0.5367379; n=11). An analysis of the “before” and “after” medication intake conditions identified a significant difference in accelerometer signal characteristics among participants with different levels of rigidity and bradykinesia (Wilcoxon rank sum test, <i>P</i><.05). CONCLUSIONS Our work demonstrates the potential use of smartphone inertial sensors as a systematic symptom severity assessment mechanism to monitor PD symptoms and to assess medication effectiveness remotely. Our smartphone-based monitoring app may also be relevant for other conditions where hand tremor is a prevalent symptom.

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Real life data on the safety and efficacy of ambroxol for patients with Gaucher disease or GBA-related Parkinson disease

Molecular Genetics and Metabolism ◽

10.1016/j.ymgme.2019.11.445 ◽

2020 ◽

Vol 129 (2) ◽

pp. S167

Author(s):

Ari Zimran ◽

Majdolen Istaiti ◽

Michal Becker-Cohen ◽

Walla Al-Hertani ◽

Beom Hee Lee ◽

...

Keyword(s):

Parkinson Disease ◽

Gaucher Disease ◽

Real Life ◽

Safety And Efficacy ◽

Life Data ◽

Real Life Data

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Psychological Resilience in Early Breast Cancer Young Patients: Experience in Real Life

Journal of Psychosomatic Research ◽

10.1016/j.jpsychores.2018.03.047 ◽

2018 ◽

Vol 109 ◽

pp. 99 ◽

Cited By ~ 1

Author(s):

D. Di Giacomo

Keyword(s):

Breast Cancer ◽

Early Breast Cancer ◽

Real Life ◽

Young Patients ◽

Psychological Resilience ◽

Patients Experience

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PARE0014 CANNABIS – HOW TO NAVIGATE BETWEEN PRESSURE FROM PATIENTS, LEGISLATION AND NEED FOR EVIDENCE

Annals of the Rheumatic Diseases ◽

10.1136/annrheumdis-2020-eular.3048 ◽

2020 ◽

Vol 79 (Suppl 1) ◽

pp. 1293.1-1293

Author(s):

N. B. Hartz

Keyword(s):

Active Role ◽

Public Debate ◽

Medical Cannabis ◽

Negative Effects ◽

Ministry Of Health ◽

National Project ◽

The Public ◽

Patient Organizations ◽

Independent Information ◽

Patients Experience

Background:Around the world, focus on cannabis has been increasing immensely the last couple of years. Patients with RMD very often experience pain and many of these patients do not get adequate relieve from ordinary painkillers. Therefore, the pressure from patients wanting to try cannabis in order to ease their pain, is very understandable but also a difficult field to navigate in for a rheumatism association. Mainly because there are so many different interests in cannabis from many sides.Objectives:The Danish Rheumatism Association has taken a very active role in unfolding knowledge of the positive and negative effects of cannabis to patients with RMD. We want to show, that we are aware of our patients needs and interests and we wish to give independent information to patients with RMD about suitable pain relief also when this involves the use of cannabis.Methods:In order to get more knowledge about the need of the patients, the Danish Rheumatism Association has registered every inquiry from patients to our professional helpline in 2018 regarding cannabis. This information has been used in our political work with the Danish Ministry of Health and has given us a deeper understanding of the RMD-patients background and motivation for using cannabis.The Danish Rheumatism Association has supported cannabis research financially, and we have taken part in the public debate with editorials. On our website, we have fact sheets regarding cannabis along with a theme about cannabis in our magazine. The Danish Rheumatism Association has been very active politically in order to get RMD-patients to be part of a national project with medical cannabis to different groups of patients. We have an ongoing contact with the Danish Ministry of Health regarding RMD-patients experience in using cannabis and we pass on RMD-patients difficulties in even getting cannabis legally. In addition, to continuously gain knowledge about RMD-patients’ experience with cannabis, we have also conducted questionnaires and surveys both in collaboration with other patient organizations and through our own channels.Results:We have made it clear that we take an active role in the public debate regarding the use of cannabis and that we understand the desire from patients to have as many options as possible to choose from when it comes to relieve their pain. However, we also acknowledge the fact, that we need more evidence when it comes to the use of cannabis as an actual option for patients with RMD-related pain. We are a reliable partner that politicians and other stakeholders take very seriously.Unfortunately, patients with RMD did not get to be part of the national project in Denmark with medical cannabis, but nevertheless many of these patients are using cannabis and most of the patients buy it illegally.Conclusion:The use of cannabis is still a very “hot topic” in many countries and the legislation can vary a lot from country to country. It is important that the rheumatism associations across Europe have knowledge about cannabis so that they can advise patients with RMD in a serious, objective and evidence-based manner.References:NoneDisclosure of Interests:None declared

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Smartphone-Based Monitoring of Parkinson Disease: Quasi-Experimental Study to Quantify Hand Tremor Severity and Medication Effectiveness

JMIR mhealth and uhealth ◽

10.2196/21543 ◽

2020 ◽

Vol 8 (11) ◽

pp. e21543

Author(s):

Elina Kuosmanen ◽

Florian Wolling ◽

Julio Vega ◽

Valerii Kan ◽

Yuuki Nishiyama ◽

...

Keyword(s):

Parkinson Disease ◽

Rating Scale ◽

Inertial Sensors ◽

Negative Impact ◽

Wearable Sensors ◽

Real Life ◽

Rank Correlation ◽

Accelerometer Data ◽

Hand Tremor ◽

Significant Difference

Background Hand tremor typically has a negative impact on a person’s ability to complete many common daily activities. Previous research has investigated how to quantify hand tremor with smartphones and wearable sensors, mainly under controlled data collection conditions. Solutions for daily real-life settings remain largely underexplored. Objective Our objective was to monitor and assess hand tremor severity in patients with Parkinson disease (PD), and to better understand the effects of PD medications in a naturalistic environment. Methods Using the Welch method, we generated periodograms of accelerometer data and computed signal features to compare patients with varying degrees of PD symptoms. Results We introduced and empirically evaluated the tremor intensity parameter (TIP), an accelerometer-based metric to quantify hand tremor severity in PD using smartphones. There was a statistically significant correlation between the TIP and self-assessed Unified Parkinson Disease Rating Scale (UPDRS) II tremor scores (Kendall rank correlation test: z=30.521, P<.001, τ=0.5367379; n=11). An analysis of the “before” and “after” medication intake conditions identified a significant difference in accelerometer signal characteristics among participants with different levels of rigidity and bradykinesia (Wilcoxon rank sum test, P<.05). Conclusions Our work demonstrates the potential use of smartphone inertial sensors as a systematic symptom severity assessment mechanism to monitor PD symptoms and to assess medication effectiveness remotely. Our smartphone-based monitoring app may also be relevant for other conditions where hand tremor is a prevalent symptom.

Download Full-text