scholarly journals Treating Tourette Together: An Agenda for Patient-Centered Research Focused on Comprehensive Behavior Therapy for Tics

2020 ◽  
Author(s):  
Christine Conelea ◽  
Shannon Bennett ◽  
Matthew Capriotti ◽  
Sara Hamilton ◽  
Michael Himle ◽  
...  
Keyword(s):  
Side Effects ◽  
Research Agenda ◽  
Tic Disorders ◽  
Specific Situation ◽  
Management Skills ◽  
Patient Centered ◽  
Present Patient ◽  
Everyday Activities ◽  
Stakeholder Input ◽  
New Generation

Tourette Syndrome and other persistent tic disorders (TDs ) involve chronic, repetitive, unwanted movements and/or sounds (i.e., tics) that can cause substantial distress and disruption in everyday activities. Effective medications for treating TD exist, but, in many cases, they cause significant side effects that limit their usability. Comprehensive Behavioral Intervention for Tics (CBIT) is a therapy that teaches tic-management skills to reduce tic frequency and interference. Large, controlled research studies have shown that CBIT reduces tics in children and adults about as much as medications, but without significant side effects. However, at present, patient demand for CBIT exceeds availability, and many patients do not have access to a local CBIT provider. Also, a smaller percentage of patients perceive CBIT to be a poor fit for their specific situation. Researchers have been exploring options to make CBIT more available and to tailor it to different settings, but patient, family, and other stakeholder input is essential to understand how to do this most effectively. We established the “Treating Tourette Together” project to bring together patients, clinicians, researchers, and other stakeholders to develop an agenda for a new generation of patient-centered CBIT research. In this report, we describe the Treating Tourette Together project and the resulting research agenda.

scholarly journals Treating Tourette Together: An Agenda for Patient-Centered Research Focused on Comprehensive Behavior Therapy for Tics

2020 ◽  
Author(s):  
Christine Conelea ◽  
Shannon Bennett ◽  
Matthew Capriotti ◽  
Sara Hamilton ◽  
Michael Himle ◽  
...  
Keyword(s):  
Side Effects ◽  
Research Agenda ◽  
American Psychiatric Association ◽  
Tic Disorders ◽  
Specific Situation ◽  
Management Skills ◽  
Patient Centered ◽  
Everyday Activities ◽  
Stakeholder Input ◽  
New Generation

Tourette Syndrome and other persistent tic disorders (TDs ) involve chronic, repetitive, unwanted movements and/or sounds (i.e., tics) that can cause substantial distress and disruption in everyday activities (American Psychiatric Association, 2013). Effective medications for treating TD exist, but, in many cases, they cause significant side effects that limit their usability. Comprehensive Behavioral Intervention for Tics (CBIT) is a therapy that teaches tic-management skills to reduce tic frequency and interference. Large, controlled research studies have shown that CBIT reduces tics in children and adults about as much as medications, but without significant side effects. However, at present, patient demand for CBIT exceeds availability, and many patients do not have access to a local CBIT provider. Also, a smaller percentage of patients perceive CBIT to be a poor fit for their specific situation. Researchers have been exploring options to make CBIT more available and to tailor it to different settings, but patient, family, and other stakeholder input is essential to understand how to do this most effectively. We established the “Treating Tourette Together” project to bring together patients, clinicians, researchers, and other stakeholders to develop an agenda for a new generation of patient-centered CBIT research. In this report, we describe the Treating Tourette Together project and present the resulting research agenda.

scholarly journals AB0894-HPR THE JOURNEY OF PATIENTS WITH RHEUMATOID ARTHRITIS

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 1470.2-1471
Author(s):  
M. Fusama ◽  
S. Oliver ◽  
H. Nakahara ◽  
Y. Van Eijk-Hustings ◽  
Y. Kuroe
Keyword(s):  
Rheumatoid Arthritis ◽  
Side Effects ◽  
Social Life ◽  
Life Story ◽  
Daily Life ◽  
Financial Burden ◽  
Psychological State ◽  
Self Management ◽  
Stable Phase ◽  
Management Skills

Background:The course of rheumatoid arthritis (RA) differs from patient to patient, and each patient has a unique story. The disease condition affects psychological and social aspects, greatly affecting the quality of life. The disease course is unpredictable, and each patient’s story can be seen as a lifelong journey, full of ups and downs. Therefore, it is crucial to know what kind of support is required during the course of their life.Objectives:The aim of this study is to examine the life story of patients with RA and clarify a common situation in their stories in order to consider what kind of support is needed.Methods:This is a qualitative study using life story interview for patients with RA in Japan. Interview included disease history, patients’ behaviors, effects on daily life, the patients’ perspectives regarding psychological considerations and useful support. Data were analyzed using content analysis. This study was approved by the ethics committee and informed consent was obtained.Results:Eight patients participated in this study. They were all females and the average age was 57 years old. As a result of the categorization, we extracted the following eight situations: (1) Emergence of symptom; patients thought joint pain would go away, however, the symptom did not improve and began to affect their daily life and work, (2) Choose a hospital to visit; pain and anxiety have continued and decided to visit a hospital, (3) Encounter with their doctors; patients expected their doctor to relieve their pain, while they were afraid of being told that they were suffering from a serious disease. (4) Diagnosis of RA; patients were shocked when diagnosed and anxious about what would happen and wondered why they had such a disease, (5) Choice of treatment; patients were afraid of the side effects. They wanted to make a decision discussing with their doctor, but they could not understand the explanation about drugs well and, therefore, followed the doctor’s opinion. (6) Change of treatment; a biological agent was often recommended. Patients were also worried about side effects and the financial burden. (7) Remission or stable phase; they felt better mentally too, however, they often felt anxiety about disease flare, side effect of drugs and financial burden, and (8) Flare and remission; patients felt shocked and disappointed when RA flared, and then, they noticed that patients with RA had alternating periods of relapse and remission and they had to live with RA.These interviews revealed repeated worsening and improvement of symptoms and many similar repeated psychological reactions such as anxiety, shock, denial, conflict, acceptance, giving up and relief. To cope with these fluctuating disease and mental conditions, patients were supported by educational and psychological assistance, timely consultations, social life help from nurses and support from their family. The patients considered a trusting relationship with their doctors is necessary. The patients had also realized through their experience the importance of enhancing their own abilities, such as decision-making, prevention of infections and self-management skills. Moreover, they noticed that it is important to have their own goals including hobbies and work.Conclusion:This study elucidated the common behaviors of patients with RA, the impact of RA on their psychological state and daily and social life, and the required support. The psychological condition and daily and social life also had a great influence on medical behavior. Therefore, psychosocial support and establishment of trust between healthcare professionals and patients are crucial. In addition, improving patients’ self-management skills including self-efficacy and empowerment is also necessary. As patients with RA often feel anxious in various situations and expect nurses’ support, nurses should listen to patients, pay attention to their concerns and anxieties, and show a solution-oriented attitude. In order for patients to feel at ease in their Patient Journey, nurses should sail with them while maintaining a patient-centered perspective.Disclosure of Interests:None declared

scholarly journals Design and Implementation of Antidepressant Decision Making Aids

2012 ◽  
Vol 3 (2) ◽  
Author(s):  
Beth DeJongh ◽  
Robert Haight
Keyword(s):  
Decision Making ◽  
Side Effects ◽  
Sexual Dysfunction ◽  
Antidepressant Treatment ◽  
Decision Aids ◽  
Antidepressant Medication ◽  
Weight Changes ◽  
Patient Centered ◽  
Medication Selection ◽  
Clinical Systems

Objectives: To create easy to understand, antidepressant medication decision making aids and describe the process used to develop the aids for patients diagnosed with depression. Methods: In collaboration with the Institute for Clinical Systems Improvement (ICSI), antidepressant medication decision making aids were developed to enhance patient and physician communication about medication selection. The final versions of the aids were based on design methods created by Dr. Victor M. Montori (Mayo Clinic) and discussions with patients and providers. Five physicians used prototype aids in their outpatient clinics to assess their usefulness. Results: Six prototype antidepressant medication decision making aids were created to review potential side-effects of antidepressant medications. The side effects included were those patients feel are most bothersome or may contribute to premature discontinuation of antidepressant treatment, including: weight changes, sexual dysfunction, sedation, and other unique side effects. The decision aids underwent several revisions before they were distributed to physicians. Physicians reported patients enjoyed using the decision aids and found them useful. The sexual dysfunction card was considered the most useful while the daily administration schedule card was felt to be the least useful. Conclusions: Physicians found the antidepressant decision making aids helpful and felt they improved their usual interactions with patients. The aids may lead to more patient-centered treatment choices and empower patients to become more directly involved in their treatment. Whether the aids improve patient's medication adherence needs to be addressed in future studies.   Type: Student Project

scholarly journals PCSK9 as a Target for Development of a New Generation of Hypolipidemic Drugs

Molecules ◽  
2022 ◽  
Vol 27 (2) ◽  
pp. 434
Author(s):  
Nikolay Kuzmich ◽  
Elena Andresyuk ◽  
Yuri Porozov ◽  
Vadim Tarasov ◽  
Mikhail Samsonov ◽  
...  
Keyword(s):  
Molecular Weight ◽  
Side Effects ◽  
Mechanisms Of Action ◽  
Lipid Lowering ◽  
Low Molecular Weight ◽  
Pcsk9 Inhibitors ◽  
Ldl Receptors ◽  
Orally Bioavailable ◽  
New Generation ◽  
Membrane Cell

PCSK9 has now become an important target to create new classes of lipid-lowering drugs. The prevention of its interaction with LDL receptors allows an increase in the number of these receptors on the surface of the cell membrane of hepatocytes, which leads to an increase in the uptake of cholesterol-rich atherogenic LDL from the bloodstream. The PCSK9 antagonists described in this review belong to different classes of compounds, may have a low molecular weight or belong to macromolecular structures, and also demonstrate different mechanisms of action. The mechanisms of action include preventing the effective binding of PCSK9 to LDLR, stimulating the degradation of PCSK9, and even blocking its transcription or transport to the plasma membrane/cell surface. Although several types of antihyperlipidemic drugs have been introduced on the market and are actively used in clinical practice, they are not without disadvantages, such as well-known side effects (statins) or high costs (monoclonal antibodies). Thus, there is still a need for effective cholesterol-lowering drugs with minimal side effects, preferably orally bioavailable. Low-molecular-weight PCSK9 inhibitors could be a worthy alternative for this purpose.

An Experience on Pomalidomide in Patients within Relapsed/Refractory Multiple Myeloma - A Multicenter Study in Turkey

2021 ◽  
pp. 92-98
Author(s):  
Mehmet Ali Erkurt ◽  
Fehmi Hindilerden ◽  
Omer Ekinci ◽  
Jale Yildiz ◽  
Mehmet Sinan Dal ◽  
...  
Keyword(s):  
Multiple Myeloma ◽  
Side Effects ◽  
Cox Regression ◽  
Single Agent ◽  
Eastern Cooperative Oncology Group ◽  
Cox Regression Analysis ◽  
Refractory Multiple Myeloma ◽  
Thalidomide Analogue ◽  
New Generation

Objective: Pomalidomide is a new generation thalidomide analogue. Effectiveness as a single agent or combination with low dose dexamethasone has been in the treatment of relapse/refractory Multiple Myeloma (MM). The aim of the present study was to share the experience of different oncology centres with pomalidomide treatment in patients with relapsed/refractory MM. Materials and Methods: Seventy-three patients from 16 centres were enrolled into the study. The patients were followed for a median of 6 months. Relapsed/refractory MM patients who received at least one line of treatment before pomalidomide were included into the study.  ISS, R-ISS and Eastern Cooperative Oncology Group (ECOG) scores of the patients and treatment-related side effects were evaluated. Results: As a result of the median follow-up for 6 months, 36% (26/72) of the patients presented progression. The estimated median PFS was found 29 months. The Cox regression analysis revealed that ECOG affected PFS only, myeloma subtype; ISS and R-ISS scores did not affect PFS. The most common side effects with pomalidomide treatment in our population include neutropenia, infections, anaemia and thrombocytopenia. Conclusion: In our study, it was statistically shown that the ECOG score was effective in survival in relapsed / refractory MM patients treated by pomalidomide. Therefore, we recommend evaluation of the ECOG score for each patient before treatment in eligible cases.

Management Skills and Capabilities in an Era of Technology Disruption

2017 ◽  
pp. 1-21
Author(s):  
Yvette Blount
Keyword(s):  
Conceptual Framework ◽  
Research Agenda ◽  
Best Practice ◽  
Central Office ◽  
Information And Communications Technology ◽  
Full Time ◽  
Communications Technology ◽  
Management Skills ◽  
Business Objectives ◽  
Specific Management

This chapter examines the literature relating to information and communications technology (ICT) and management skills and capabilities relating to anywhere working. The workforce is becoming more global, and workers can work from anywhere and still be connected with colleagues and collaborators. Although ICT is an enabler of anywhere working, sustainable anywhere working requires specific management skills and capabilities. Globalization of work requires organizations to manage workers ranging from full-time employees through to freelancers working in different locations including a central office, co-working center, from home and other flexible options. The chapter concludes by proposing a research agenda and conceptual framework to identify the management skills and capabilities required to successfully manage anywhere working (other terms include telework and telecommuting). The proposed conceptual framework will inform researchers and managers on best practice for adopting sustainable anywhere working to achieve strategic business objectives.

Why Municipal Cooperation Matters

2016 ◽  
pp. 140-152 ◽  
Author(s):  
Filipe Teles ◽  
Pekka Kettunen
Keyword(s):  
Side Effects ◽  
Research Agenda ◽  
State Of The Art ◽  
Common Phenomenon ◽  
Costs And Benefits ◽  
Negative Side ◽  
Provision Of Services ◽  
Negative Side Effects ◽  
The Impact ◽  
Perceived Costs

It is a common phenomenon that municipalities cooperate with each other. Cooperation eventually brings about the gains of efficiency or makes it possible to deliver services. We can however assume that cooperation may also fail, cause unwarranted negative side-effects and diminish the democratic capacity of the participating municipalities. The aim of this paper is to present the literature and available scholarship on the topic, and discuss the research agenda on inter-municipal cooperation, especially through the analysis of its scope, motivations, and perceived costs and benefits. The approach to the problem will be based in multidisciplinary contributions of existing research, which involves theoretical arguments related to the advantages of cooperation, the impact on democracy and accountability, as well as the discussion of public vs private provision of services. The conclusions should enable a serious reflection about Inter-Municipal Cooperation state of the art.

scholarly journals Potential of Novel EPO Derivatives in Limb Ischemia

2012 ◽  
Vol 2012 ◽  
pp. 1-5 ◽  
Author(s):  
Dhiraj Joshi ◽  
Janice Tsui ◽  
Rebekah Yu ◽  
Xu Shiwen ◽  
Sadasivam Selvakumar ◽  
...  
Keyword(s):  
Side Effects ◽  
Haemoglobin Concentration ◽  
Limb Ischemia ◽  
Critical Limb Ischaemia ◽  
Limb Ischaemia ◽  
Preclinical Studies ◽  
Protective Properties ◽  
New Generation ◽  
Potential Use

Erythropoietin (EPO) has tissue-protective properties, but it increases the risk of thromboembolism by raising the haemoglobin concentration. New generation of EPO derivatives is tissue protective without the haematopoietic side effects. Preclinical studies have demonstrated their effectiveness and safety. This paper summarizes the development in EPO derivatives with emphasis on their potential use in critical limb ischaemia.

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