Patient organizations for ADHD (countries in alphabetical order)

The aim of the author is to discuss special issues of rare diseases, with emphasis on circumstances present in Hungary, including those leading to the foundation of the non-governmental organization, the Hungarian Federation of People with Rare and Congenital Diseases. The author briefly reviews the most important findings of current international surveys which have been performed with or without the involvement of member associations of the Hungarian Federation of People with Rare and Congenital Diseases. At the level of medical and social services in Hungary, it is still “incidental” to get to the appropriate expert or centre providing the diagnosis or treatment. It is difficult to find the still very few existing services due to the lack of suitable “pathways” and referrals. There are long delays in obtaining the first appointment, resulting in vulnerability and inequality along the regions. The overall consequence is the insufficiency or lack of access to medical and social services. There are also difficulties related to the supply of orphan medication and the long duration of hospitalization. At the level of patient organizations financial scarcity and uncertainty are typical, combined with inappropriate infrastructural background and human resources. The poor quality of organization of patient bodies along with insufficient cooperation among them are characteristic as well. The author concludes that a National Plan or Strategy is needed to improve the current fragmentation of services which would enable patients and health, social and educational professionals to provide and use the best care in the practice. This would ensure all patients with rare diseases to be diagnosed within a possible shortest time allowing access to the care and support needed in time resulting in a decrease in burden of families and society. Orv. Hetil., 2014, 155(9), 329–333.

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Implementasi Metode Entropy dan Topsis Dalam Sistem Pendukung Keputusan Pemilihan Karyawan Terbaik

Jurnal ULTIMA Computing ◽

10.31937/sk.v10i1.887 ◽

2018 ◽

Vol 10 (1) ◽

pp. 13-18

Author(s):

Mitha Anggreani Rupang ◽

Adhi Kusnadi

Keyword(s):

Decision Support ◽

Decision Support System ◽

Support System ◽

Smart City ◽

Entropy Method ◽

Satisfaction Level ◽

Topsis Method ◽

Alphabetical Order ◽

Index Terms ◽

Growth Ability

Employee is a part of the company's most important asset in its efforts to maintain survival, growth, ability to compete and profit. At this time the process of assessment of employees in Jakarta Smart City is still in the form of manual and the decision only from one party only, so the process is still not accurate. So it takes the methods that must be able to replace that system. For that reason, a Decision Support System (SPK) was created to determine the best employees in Jakarta Smart City. In the system implemented the method of Entropy and TOPSIS. Entropy method can be trusted in determining the weight of the criteria to be used. And TOPSIS method can quickly perform the ranking process. Criteria to be used are quality and quantity of work, obedience, cooperation, morale, and work discipline. The index of satisfaction level of respondents to the decision support system ranges from 70% -80%, meaning that the assessment of the system created gives results at a fairly good level. Index Terms—employee, nter key words or phrases in alphabetical order, separated by commas

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Best of Five MCQs for the MRCP Part 1 Volume 3

10.1093/oso/9780198747178.001.0001 ◽

2017 ◽

Keyword(s):

Royal College ◽

Respiratory Medicine ◽

Evidence Based ◽

Medical Systems ◽

High Quality ◽

Alphabetical Order ◽

Practice Questions

Best of Five MCQs for the MRCP Part 1 volumes 1-3 offers a comprehensive and trustworthy solution to anybody wishing to sit, pass, and excel at the Membership of the Royal College of Physicians Part 1 examination. Presented as a unique three-volume set, each volume features 375 high-quality practice questions on each of the medical systems and specialties in alphabetical order. Volume 3 features Best of Five questions on nephrology, neurology, psychiatry, respiratory medicine, and rheumatology. All 375 questions contain questions written and reviewed by successful candidates and previous examiners, and are accompanied by detailed explanations and further reading, ensuring complete and successful revision for this challenging exam. Matched to the latest Royal College curricula in coverage and format, this dedicated resource provides readers with an accurate, authoritative and evidence-based companion to the MRCP Part 1.

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THE HISTORY OF BILINGUAL DICTIONARIES RECONSIDERED: AN ANCIENT FRAGMENT RELATED TO PS.-PHILOXENUS (P.VARS. 6) AND ITS SIGNIFICANCE

The Classical Quarterly ◽

10.1017/s0009838821000343 ◽

2021 ◽

pp. 1-20

Author(s):

Eleanor Dickey

Keyword(s):

Late Antiquity ◽

Ninth Century ◽

Sixth Century ◽

Alphabetical Order ◽

Bilingual Dictionaries ◽

History Of ◽

The Republic

Abstract This article identifies a papyrus in Warsaw, P.Vars. 6, as a fragment of the large Latin–Greek glossary known as Ps.-Philoxenus. That glossary, published in volume II of G. Goetz's Corpus Glossariorum Latinorum on the basis of a ninth-century manuscript, is by far the most important of the bilingual glossaries surviving from antiquity, being derived from lost works of Roman scholarship and preserving valuable information about rare and archaic Latin words. It has long been considered a product of the sixth century a.d., but the papyrus dates to c.200, and internal evidence indicates that the glossary itself must be substantially older than that copy. The Ps.-Philoxenus glossary is therefore not a creation of Late Antiquity but of the Early Empire or perhaps even the Republic. Large bilingual glossaries in alphabetical order must have existed far earlier than has hitherto been believed.

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AB1335-HPR HEALTH PROFESSIONALS’ PERSPECTIVE ON THE BENEFITS AND RISKS OF LOW-DOSE GLUCOCORTICOIDS IN RHEUMATOID ARTHRITIS – AN INTERNATIONAL SURVEY OF 444 HEALTH PROFESSIONALS

Annals of the Rheumatic Diseases ◽

10.1136/annrheumdis-2020-eular.3277 ◽

2020 ◽

Vol 79 (Suppl 1) ◽

pp. 1955.1-1956

Author(s):

T. Santiago ◽

M. Voshaar ◽

M. De Wit ◽

P. Carvalho ◽

M. Boers ◽

...

Keyword(s):

Rheumatoid Arthritis ◽

Adverse Events ◽

Health Professionals ◽

Patient Perspective ◽

Online Survey ◽

Low Dose ◽

Low Doses ◽

Research Support ◽

Serious Adverse Events ◽

Patient Organizations

Background:The Glucocorticoid Low-dose Outcome in Rheumatoid Arthritis Study (GLORIA) is an international investigator-initiated pragmatic randomized trial designed to study the effects of low-dose glucocorticoids (GCs) in elderly patients with Rheumatoid Arthritis (RA).The research team is also committed to promote a better understanding of the risks and benefits of these drugs among health professionals and patients. In order to achieve these goals, it is important to assess the current ideas and concerns of patients regarding GCs.Objectives:To evaluate the current patient perspective on the efficacy and risks of GCs in RA patients who are or have been treated with GCs.Methods:Patients with RA completed an online survey (with 5 closed questions regarding efficacy and safety) presented in their native language. RA patients were recruited through a variety of patient organizations representing three continents. Patients were invited to participate through national patient organizations. In the USA, patients were also invited to participate through MediGuard.org. Participants were asked for their level of agreement on a 5-point Likert scale.Results:1344 RA patients with exposure to GCs, from Brazil, USA, UK, Portugal, Netherlands, Germany and 24 other countries** participated: 89% female, mean age (SD) 52 (14) years and mean disease duration 13 (11) years. The majority of participants (84%) had ≥10 years of education. The duration of GCs exposure was 1.6 (4.2) years. The majority of participants had read articles or pamphlets on the benefits or harms of GC therapy.Regarding GCs efficacy (table 1), high levels of endorsement were found: about 2/3 of patients considered that GCs as very useful in their case, more than half considered that GCs were effective even at low doses, and agreed that GC improved RA symptoms within days.Regarding safety (table 1), 1/3 of the participants reported having suffered some form of serious adverse events (AEs) due to GCs, and 9% perceived this as “life-threatening. Adverse events had a serious impact on quality of life, according to about 1/3 of the respondents.Conclusion:Patients with RA exposed to GC report a strong conviction that GCs are very useful and effective for the treatment of their RA, even at low doses. This is accompanied by an important prevalence of serious AEs. Understanding the patient perspective can improve shared decision-making between patient and rheumatologist.Funding statement:This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 634886.Disclosure of Interests:Tânia Santiago: None declared, Marieke Voshaar Grant/research support from: part of phd research, Speakers bureau: conducting a workshop (Pfizer), Maarten de Wit Grant/research support from: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Consultant of: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Speakers bureau: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Pedro Carvalho: None declared, Maarten Boers: None declared, Maurizio Cutolo Grant/research support from: Bristol-Myers Squibb, Actelion, Celgene, Consultant of: Bristol-Myers Squibb, Speakers bureau: Sigma-Alpha, Frank Buttgereit Grant/research support from: Amgen, BMS, Celgene, Generic Assays, GSK, Hexal, Horizon, Lilly, medac, Mundipharma, Novartis, Pfizer, Roche, and Sanofi., José Antonio P. da Silva Grant/research support from: Pfizer, Abbvie, Consultant of: Pfizer, AbbVie, Roche, Lilly, Novartis

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The impact of end-userś participation (cancer patients) during the optimization process

European Journal of Public Health ◽

10.1093/eurpub/ckaa165.1437 ◽

2020 ◽

Vol 30 (Supplement_5) ◽

Author(s):

S Houwaart

Keyword(s):

End Users ◽

Public Health Care ◽

Optimization Process ◽

Patient Organization ◽

End User ◽

The Public ◽

Patient Organizations ◽

Crucial Information ◽

The Individual ◽

The Impact

Abstract End-user (e.g. patients or the public) testing of information material is becoming more common in the German public health care system. However, including the end-user (in this case patients) in an optimisation process and thus enabling a close collaboration while developing PIMs is still rare. This is surprising, given the fact that patients provide the exact perspective one is trying to address. Within the isPO project, a patient organization is included as a legal project partner to act as the patient representative and provide the patient's perspective. As such, the patient organization was included in the PHR approach as part of the PIM-optimisation team. During the optimisation process, the patients gave practical insights into the procedures of diagnosing and treating different types of cancer as well as into the patient's changing priorities and challenges at different time points. This was crucial information for the envisioned application of the individual PIMs and their hierarchical overview. Moreover, the developed PIM-checklist enabled the patients to give detailed feedback to the PIMs. With their experience of being in the exact situation in which the PIMs will be applied, their recommendations, especially on the wording and layout of the materials, have been a valuable contribution to the PIM optimisation process. In this part of the seminar, we will take a closer look at the following skill building aspects: What is gained from including patients as end-users in the development and optimization of PIM?How can we reach patients to contribute to a PIM optimization process? Which requirements and prerequisites do patients have to provide to successfully work on an optimisation team?How to compromise and weigh opinions when different ideas occur? Altogether, this part will construct a structured path of productive patient involvement and help to overcome uncertainties regarding a collaboration with patient organizations.

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Exploring the use of cannabis as a substitute for prescription drugs in a convenience sample

Harm Reduction Journal ◽

10.1186/s12954-021-00520-5 ◽

2021 ◽

Vol 18 (1) ◽

Author(s):

Sinikka L. Kvamme ◽

Michael M. Pedersen ◽

Kristine Rømer Thomsen ◽

Birgitte Thylstrup

Keyword(s):

Side Effects ◽

Drug Use ◽

Prescription Drug ◽

Prescription Drugs ◽

Online Survey ◽

Convenience Sample ◽

Patient Organizations ◽

Public Media ◽

Prescription Drug Use ◽

The Impact

Abstract Background The use of cannabis as medicine (CaM) both prescribed and non-prescribed has increased markedly in the last decade, mirrored in a global shift in cannabis policy towards a more permissive stance. There is some evidence that cannabis functions as a substitute for prescription drugs, particularly opioids; however, more knowledge is needed on the motives of substitution users, their patterns of use, and perceived effects of substitution use. Aims To explore who substitutes prescription drugs with cannabis, the type of prescription drugs substituted and the type of cannabis used, and the impact that substitution with cannabis has on prescription drug use as well as the motives for substitution in terms of experienced effects and side effects. Methods A self-selected convenience sample was recruited through social media, public media, and patient organizations to take part in an anonymous online survey. Inclusion criteria were 18 years or older and use of cannabis (prescribed or non-prescribed) with a medical purpose. Results The final sample included 2.841 respondents of which the majority (91%) used non-prescribed cannabis, and more than half (54.6%) had used CaM with the purpose of replacing a prescribed drug. Compared to non-substitution users, substitution users were more likely to be women and to use CaM in the treatment of chronic pain and other somatic conditions. Pain medication (67.2%), antidepressants (24.5%), and arthritis medication (20.7%) were the most common types of drugs replaced with CaM. Among substitution users, 38.1% reported termination of prescription drug use, and 45.9% a substantial decrease in prescription drug use. The most frequent type of cannabis used as a substitute was CBD-oil (65.2%), followed by ‘hash, pot or skunk’ (36.6%). More than half (65.8%) found CaM much more effective compared to prescription drugs, and 85.5% that the side effects associated with prescription drug use were much worse compared to use of CaM. Conclusion CaM is frequently used as a substitute for prescription drugs, particularly opioids. More research is needed on the long-term consequences of use of CaM, including the impact from low and high THC cannabis products on specific somatic and mental health conditions.

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Our Evolving Understanding of ME/CFS

Medicina ◽

10.3390/medicina57030200 ◽

2021 ◽

Vol 57 (3) ◽

pp. 200 ◽

Cited By ~ 1

Author(s):

Kenneth J. Friedman ◽

Modra Murovska ◽

Derek F. H. Pheby ◽

Paweł Zalewski

Keyword(s):

Active Phase ◽

Case Definitions ◽

Diagnostic Laboratory ◽

Biochemical Pathways ◽

Patient Organizations ◽

Clinical Consequences ◽

Potential Benefits ◽

Multiple Case ◽

Use Of The Internet ◽

The Uk

The potential benefits of the scientific insights gleaned from years of treating ME/CFS for the emerging symptoms of COVID-19, and in particular Longhaul- or Longhauler-COVID-19 are discussed in this opinion article. Longhaul COVID-19 is the current name being given to the long-term sequelae (symptoms lasting beyond 6 weeks) of SARS-CoV-2 infection. Multiple case definitions for ME/CFS exist, but post-exertional malaise (PEM) is currently emerging as the ‘hallmark’ symptom. The inability to identify a unique trigger of ME/CFS, as well as the inability to identify a specific, diagnostic laboratory test, led many physicians to conclude that the illness was psychosomatic or non-existent. However, recent research in the US and the UK, championed by patient organizations and their use of the internet and social media, suggest underlying pathophysiologies, e.g., oxidative stress and mitochondrial dysfunction. The similarity and overlap of ME/CFS and Longhaul COVID-19 symptoms suggest to us similar pathological processes. We put forward a unifying hypothesis that explains the precipitating events such as viral triggers and other documented exposures: For their overlap in symptoms, ME/CFS and Longhaul COVID-19 should be described as Post Active Phase of Infection Syndromes (PAPIS). We further propose that the underlying biochemical pathways and pathophysiological processes of similar symptoms are similar regardless of the initiating trigger. Exploration of the biochemical pathways and pathophysiological processes should yield effective therapies for these conditions and others that may exhibit these symptoms. ME/CFS patients have suffered far too long. Longhaul COVD-19 patients should not be subject to a similar fate. We caution that failure to meet the now combined challenges of ME/CFS and Longhaul COVID-19 will impose serious socioeconomic as well as clinical consequences for patients, the families of patients, and society as a whole.

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AB1082 INFLUENCE OF THE VARIATION OF THE OPERATOR, PATIENT POSITION AND DEVICE ON THE MEASUREMENT PERFORMANCE OF RADIOFREQUENCY ECHOGRAPHIC MULTI SPECTROMETRY (REMS)

Annals of the Rheumatic Diseases ◽

10.1136/annrheumdis-2020-eular.4553 ◽

2020 ◽

Vol 79 (Suppl 1) ◽

pp. 1830.1-1830

Author(s):

C. Caffarelli ◽

G. Adami ◽

G. Arioli ◽

G. Bianchi ◽

M. L. Brandi ◽

...

Keyword(s):

Lumbar Spine ◽

Femoral Neck ◽

High Performance ◽

Mineral Density ◽

Research Support ◽

Short Term ◽

Alphabetical Order ◽

Patient Position ◽

Term Monitoring

Background:The monitoring of bone mineral density (BMD) is a key aspect for patients undergoing pharmacological treatments that might cause BMD changes at non-physiological rates. At present, the short-term follow-up of patients under treatment in terms of BMD change with time remains an unmet clinical need, since the current techniques, including the gold standard dual X-ray absorptiometry (DXA), require at least 1 year between two consecutive measurements [1]. Therefore, an effective strategy for the assessment of BMD should guarantee high accuracy, precision and repeatability of the measurements.Objectives:The aim is to assess the influence of the variation 1) in patient position, 2) operator (both intra- and inter-) and 3) device on the REMS performance at lumbar spine and femoral neck.Methods:210 women were enrolled, divided in 7 groups of 30-patient each for the assessment of the parameters of interest, i.e. inter-device, intra- and inter-operator repeatability for lumbar spine scans and inter-patient position, inter-device, intra- and inter-operator repeatability for femoral neck scans.All patients underwent 2 REMS scans at lumbar spine or femoral neck, performed by the same operator or by 2 different operators or by the same operator using 2 different devices or in different patient position (i.e. supine without constraints or with a constrained 25°-rotation of the leg). The percentage coefficient of variation (CV%) with 95% confidence interval and least significant change for a 95% confidence level (LSC) have been calculated.Results:For lumbar spine, intra-operator repeatability resulted in CV%=0.37% (95%CI: 0.26%-0.48%), with LSC=1.02%, inter-operator repeatability resulted in CV%=0.55% (95% CI: 0.42%-0.68%), with LSC=1.52%, inter-device repeatability resulted in CV%=0.53% (95% CI: 0.40%-0.66%), with LSC=1.47%.For femoral neck, intra-operator repeatability resulted in CV%=0.33% (95%CI: 0.23%-0.43%), with LSC=0.91%, inter-operator repeatability resulted in CV%=0.47% (95% CI: 0.35%-0.59%), with LSC=1.30%, inter-device repeatability resulted in CV%=0.42% (95% CI: 0.30%-0.51%), with LSC=1.16%, inter-patient position repeatability resulted in CV%=0.24% (95% CI: 0.18%-0.30%), with LSC=0.66%.Conclusion:REMS densitometry is highly precise for both anatomical sites, showing high performance in repeatability. These results suggest that REMS might be a suitable technology for short-term monitoring. Moreover, thanks to its ionizing radiation-free approach, it might be applied for population mass investigations and prevention programs also in paediatric patients and pregnant women.References:Note:Carla Caffarelli, Giovanni Adami§, Giovanni Arioli§, Gerolamo Bianchi§, Maria Luisa Brandi§, Sergio Casciaro§, Luisella Cianferotti§, Delia Ciardo§, Francesco Conversano§, Davide Gatti§, Giuseppe Girasole§, Monica Manfredini§, Maurizio Muratore§, Paola Pisani§, Eugenio Quarta§, Laura Quarta§, Stefano Gonnelli§Equal contributors listed in alphabetical orderDisclosure of Interests:Carla Caffarelli: None declared, Giovanni Adami: None declared, Giovanni Arioli *: None declared, Gerolamo Bianchi Grant/research support from: Celgene, Consultant of: Amgen, Janssen, Merck Sharp & Dohme, Novartis, UCB, Speakers bureau: Abbvie, Abiogen, Alfa-Sigma, Amgen, BMS, Celgene, Chiesi, Eli Lilly, GSK, Janssen, Medac, Merck Sharp & Dohme, Novartis, Pfizer, Roche, Sanofi Genzyme, Servier, UCB, Maria Luisa Brandi: None declared, Sergio Casciaro: None declared, Luisella Cianferotti: None declared, Delia Ciardo: None declared, Francesco Conversano: None declared, Davide Gatti Speakers bureau: Davide Gatti reports personal fees from Abiogen, Amgen, Janssen-Cilag, Mundipharma, outside the submitted work., Giuseppe Girasole: None declared, Monica Manfedini: None declared, Maurizio Muratore: None declared, Paola Pisani: None declared, Eugenio Quarta: None declared, Laura Quarta: None declared, Stefano Gonnelli: None declared

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