scholarly journals Prioritizing progressive MS rehabilitation research: A call from the International Progressive MS Alliance

2021 ◽  
pp. 135245852199997
Author(s):  
Kathleen M Zackowski ◽  
Jennifer Freeman ◽  
Giampaolo Brichetto ◽  
Diego Centonze ◽  
Ulrik Dalgas ◽  
...  
Keyword(s):  
Symptom Management ◽  
Psychosocial Support ◽  
Management Strategies ◽  
Research Priorities ◽  
Significant Progress ◽  
Call To Action ◽  
Rehabilitation Research ◽  
Relapsing Remitting ◽  
Upper Extremity Impairment

Background: People with multiple sclerosis (MS) experience myriad symptoms that negatively affect their quality of life. Despite significant progress in rehabilitation strategies for people living with relapsing-remitting MS (RRMS), the development of similar strategies for people with progressive MS has received little attention. Objective: To highlight key symptoms of importance to people with progressive MS and stimulate the design and implementation of high-quality studies focused on symptom management and rehabilitation. Methods: A group of international research experts, representatives from industry, and people affected by progressive MS was convened by the International Progressive MS Alliance to devise research priorities for addressing symptoms in progressive MS. Results: Based on information from the MS community, we outline a rationale for highlighting four symptoms of particular interest: fatigue, mobility and upper extremity impairment, pain, and cognitive impairment. Factors such as depression, resilience, comorbidities, and psychosocial support are described, as they affect treatment efficacy. Conclusions: This coordinated call to action—to the research community to prioritize investigation of effective symptom management strategies, and to funders to support them—is an important step in addressing gaps in rehabilitation research for people affected by progressive MS.

Geriatric Nephrology Syndromes and Assessment and Management of Cognitive Impairment

2020 ◽  
pp. 188-196
Author(s):  
Edwina A. Brown ◽  
Osasuyi Iyasere
Keyword(s):  
Quality Of Life ◽  
Cognitive Impairment ◽  
Kidney Disease ◽  
Management Strategies ◽  
Research Priorities ◽  
The Elderly ◽  
Future Research ◽  
Geriatric Syndromes ◽  
Geriatric Nephrology

The demographics of the renal population have evolved, such that the elderly are the fastest growing group. Consequently, the multidisciplinary renal team often encounters clinical issues associated with advancing age. In this chapter, frailty, falls, and cognitive impairment are discussed as underrecognized geriatric syndromes in patients with chronic kidney disease. A case history illustrates how these syndromes tend to co-exist and affect quality of life and survival. The risk factors, management strategies, and future research priorities are discussed, recognizing the importance of a multidisciplinary approach to the management of elderly patients with kidney disease.

scholarly journals Improving Care and Empowering Adults Living with SMA: A Call to Action in the New Treatment Era

2021 ◽  
pp. 1-9
Author(s):  
Maggie C. Walter ◽  
Claudia Chiriboga ◽  
Tina Duong ◽  
Nathalie Goemans ◽  
Anna Mayhew ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Lived Experiences ◽  
Unmet Needs ◽  
Muscular Atrophy ◽  
Management Strategies ◽  
Effective Management ◽  
Call To Action ◽  
Pediatric Populations ◽  
New Treatment

While Spinal Muscular Atrophy (SMA) has historically been managed with supportive measures, the emergence of innovative medicines has given those living with SMA hope for improved quality of life and has revolutionized care. Despite these advances, the use of therapies and changes in disease management strategies have focused on pediatric populations, leaving adults living with SMA, and those transitioning into adulthood, relatively neglected. Through a multi-faceted approach that gathered unbiased perspectives from clinical experts, validated insights from individuals with lived experiences, and substantiated findings with evidence from the literature, we have exposed unmet needs that are hindering the field and, ultimately, impacting care and quality of life for adults living with SMA. Here, we set new aspirations and calls to action to inspire continued research in this field, stimulate dialogue across the SMA community and inform policies that deliver effective management and care throughout an adult’s journey living with SMA.

Measuring patient engagement among cancer patients in eHealth and mHealth interventions on symptom management: an integrated review (Preprint)

2020 ◽  
Author(s):  
Juqing Zhao ◽  
Pei Chen ◽  
Guangming Wan
Keyword(s):  
Cancer Patients ◽  
Patient Engagement ◽  
Symptom Management ◽  
Subjective Experience ◽  
Participation Rate ◽  
Sensor Data ◽  
Quality Of Data ◽  
Mhealth Intervention

BACKGROUND There has been an increase number of eHealth and mHealth interventions aimed to support symptoms among cancer survivors. However, patient engagement has not been guaranteed and standardized in these interventions. OBJECTIVE The objective of this review was to address how patient engagement has been defined and measured in eHealth and mHealth interventions designed to improve symptoms and quality of life for cancer patients. METHODS Searches were performed in MEDLINE, PsychINFO, Web of Science, and Google Scholar to identify eHealth and mHealth interventions designed specifically to improve symptom management for cancer patients. Definition and measurement of engagement and engagement related outcomes of each intervention were synthesized. This integrated review was conducted using Critical Interpretive Synthesis to ensure the quality of data synthesis. RESULTS A total of 792 intervention studies were identified through the searches; 10 research papers met the inclusion criteria. Most of them (6/10) were randomized trial, 2 were one group trail, 1 was qualitative design, and 1 paper used mixed method. Majority of identified papers defined patient engagement as the usage of an eHealth and mHealth intervention by using different variables (e.g., usage time, log in times, participation rate). Engagement has also been described as subjective experience about the interaction with the intervention. The measurement of engagement is in accordance with the definition of engagement and can be categorized as objective and subjective measures. Among identified papers, 5 used system usage data, 2 used self-reported questionnaire, 1 used sensor data and 3 used qualitative method. Almost all studies reported engagement at a moment to moment level, but there is a lack of measurement of engagement for the long term. CONCLUSIONS There have been calls to develop standard definition and measurement of patient engagement in eHealth and mHealth interventions. Besides, it is important to provide cancer patients with more tailored and engaging eHealth and mHealth interventions for long term engagement.

scholarly journals Research Priorities for Mental Health and Psychosocial Support in Humanitarian Settings

PLoS Medicine ◽  
2011 ◽  
Vol 8 (9) ◽  
pp. e1001096 ◽  
Author(s):  
Wietse A. Tol ◽  
Vikram Patel ◽  
Mark Tomlinson ◽  
Florence Baingana ◽  
Ananda Galappatti ◽  
...  
Keyword(s):  
Mental Health ◽  
Psychosocial Support ◽  
Research Priorities ◽  
Humanitarian Settings

scholarly journals Current Status and Potential of RNA Interference for the Management of Tomato Spotted Wilt Virus and Thrips Vectors

Pathogens ◽  
2021 ◽  
Vol 10 (3) ◽  
pp. 320
Author(s):  
Alexander Nilon ◽  
Karl Robinson ◽  
Hanu R. Pappu ◽  
Neena Mitter
Keyword(s):  
Rna Interference ◽  
Tomato Spotted Wilt Virus ◽  
Cultural Practices ◽  
Management Strategies ◽  
Current Status ◽  
Horticultural Crops ◽  
Yield And Quality ◽  
Tomato Spotted Wilt ◽  
Wilt Virus

Tomato spotted wilt virus (TSWV) is the type member of the genus Orthotospovirus in the family Tospoviridae and order Bunyavirales. TSWV, transmitted by several species of thrips, causes significant disease losses to agronomic and horticultural crops worldwide, impacting both the yield and quality of the produce. Management strategies include growing virus-resistant cultivars, cultural practices, and managing thrips vectors through pesticide application. However, numerous studies have reported that TSWV isolates can overcome host-plant resistance, while thrips are developing resistance to pesticides that were once effective. RNA interference (RNAi) offers a means of host defence by using double-stranded (ds) RNA to initiate gene silencing against invading viruses. However, adoption of this approach requires production and use of transgenic plants and thus limits the practical application of RNAi against TSWV and other viruses. To fully utilize the potential of RNAi for virus management at the field level, new and novel approaches are needed. In this review, we summarize RNAi and highlight the potential of topical or exogenous application of RNAi triggers for managing TSWV and thrips vectors.

scholarly journals The Development of a Personalized Symptom Management Mobile Health Application for Persons Living with HIV in China

2021 ◽  
Vol 11 (5) ◽  
pp. 346
Author(s):  
Shuyu Han ◽  
Yaolin Pei ◽  
Lina Wang ◽  
Yan Hu ◽  
Xiang Qi ◽  
...  
Keyword(s):  
Mobile Health ◽  
Symptom Management ◽  
Medical Staff ◽  
Quantitative Data ◽  
Research Team ◽  
Management Strategies ◽  
Sufficient Evidence ◽  
Relaxation Techniques ◽  
Persons Living With Hiv ◽  
Living With Hiv

Persons living with HIV (PLWH) continuously experience symptom burdens. Their symptom prevalence and severity are also quite different. Mobile health (mHealth) applications (apps) offer exceptional opportunities for using personalized interventions when and where PLWH are needed. This study aimed to demonstrate the development process of the symptom management (SM) app and the structure and content of it. Our research team systematically searched for evidence-based resources and summarized up-to-date evidence for symptom management and health education. Our multidisciplinary research team that included physicians, nurses, software engineers, and nursing professors, evaluated the structure and content of the drafted app. Both quantitative data and qualitative results were collected at a group discussion meeting. Quantitative data were scores of sufficient evidence, situational suitability, practicability, cost-effectiveness, and understandability (ranged from one to four) for 119 items of the app contents, including the health tracking module, the self-assessment module, coping strategies for 18 symptoms (80 items), medication management, complementary therapy, diet management, exercise, relaxation techniques, and the obtaining support module. The SM app was comprised of eight modules and provided several personalized symptom management functions, including assessing symptoms and receiving different symptom management strategies, tracking health indicators, and communicating with medical staff. The SM app was a promising and flexible tool for HIV symptom management. It provided PLWH with personalized symptom management strategies and facilitated the case management for medical staff. Future studies are needed to further test the app’s usability among PLWH users and its effects on symptom management.

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