Effect of Multiple Sclerosis on Daily Activities, Emotional Well-being, and Relationships

Abstract Background: The vsMS survey was conducted to better understand the negative effects of fatigue, cognitive impairment, emotional burden, and decreased physical functioning on the personal, professional, and social lives of individuals with multiple sclerosis (MS). Methods: The vsMS survey was an online survey conducted in Australia, Canada, France, Italy, Spain, the United Kingdom, and the United States that assessed the impact of MS on individuals’ daily activities, emotional well-being, relationships, and employment. Results: The survey included 1075 participants with relapsing-remitting MS. Almost 42% of participants reported that their ability to perform and manage daily activities had worsened during the previous 2 years. More than 50% reported limitations in daily activities due to fatigue, physical weakness, problems with balance/coordination, heat/cold sensitivity, memory problems, numbness/tingling, trouble concentrating, impaired movement/muscle stiffness, and impaired sleeping. Participants also reported a negative effect on emotional and social factors, including self-esteem, general outlook, well-being, maintaining/starting relationships, ability to progress in their career/keep their job, and ability to cope with life roles. Conclusions: These data highlight the importance of addressing the impact of MS and the social and emotional disease burdens on daily activities when planning the care of patients with MS.

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Development of a novel patient-reported measure for acromegaly: the Acro-TSQ

Pituitary ◽

10.1007/s11102-019-00986-4 ◽

2019 ◽

Vol 22 (6) ◽

pp. 581-593 ◽

Cited By ~ 6

Author(s):

Maria Fleseriu ◽

Leon Fogelfeld ◽

Murray B. Gordon ◽

Jill Sisco ◽

Hilary H. Colwell ◽

...

Keyword(s):

Side Effects ◽

Disease Burden ◽

Symptom Control ◽

Somatostatin Analogs ◽

Well Being ◽

The United States ◽

Daily Activities ◽

Response Options ◽

Patient Reported ◽

The Impact

Abstract Purpose Somatostatin analogs (SSAs) represent a mainstay of medical treatment for acromegaly, currently available as either intramuscular or deep subcutaneous injections. Patient-reported outcomes (PROs) are increasingly common as relevant outcomes in studies of acromegaly and its treatment, but there are no validated PRO measures available that focus on the disease burden and the impact of treatment, specifically designed for use in patients with acromegaly. We sought to develop a new and unique PRO measure, the Acromegaly Treatment Satisfaction Questionnaire (Acro-TSQ). Methods Concept elicitation (CE) interviews were conducted with acromegaly patients in the United States receiving SSA injections at a stable dose for ≥ 6 months. A questionnaire was drafted based on these interviews; combined CE and cognitive debriefing (CE/CD) interviews were then conducted to confirm the content, clarity, and relevance of the questionnaire. Results Nineteen subjects completed interviews [n = 9 CE, n = 10 CE/CD; n = 15 Lanreotide Depot/Autogel (Somatuline), n = 4 Octreotide LAR (Sandostatin LAR)]. Most subjects responded positively when asked about the effectiveness of their current treatment; however, breakthrough symptoms, injection site reactions, and side effects were commonly reported and had negative impacts on social and emotional well-being and daily activities. All 10 subjects involved in debriefing interviews found the questionnaire to be relevant, easy to complete, and found the response options to be clear. The resulting 26-item Acro-TSQ covers symptoms and symptom control, gastrointestinal side effects and their impact on daily activities, the emotional impact of treatment, convenience and ease of use, and overall satisfaction. Conclusions The Acro-TSQ is a novel PRO, focused on both disease burden and impact of treatment; it was found to be comprehensive, clear, and relevant for patients with acromegaly receiving injectable SSA treatment.

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Maternal Adverse Childhood Experience Exposure and Resilience During COVID-19

Families in Society The Journal of Contemporary Social Services ◽

10.1177/10443894211002323 ◽

2021 ◽

pp. 104438942110023

Author(s):

Catherine A. LaBrenz ◽

Philip Baiden ◽

Erin Findley ◽

Patrick S. Tennant ◽

Sreyashi Chakravarty

Keyword(s):

Child Care ◽

Online Survey ◽

Well Being ◽

The United States ◽

The Novel ◽

Childhood Experiences ◽

Adverse Childhood ◽

Novel Coronavirus ◽

The Impact

Since March 2020, families across the United States have faced challenges due to the novel coronavirus (COVID-19) pandemic and its subsequent restrictions. Although some experts have voiced concern over the impact of COVID-19 on family well-being, few studies have been conducted thus far. This study utilized n = 250 responses from an online survey that was administered between May and June 2020 to gauge family stress and resilience among mothers of children ages 0 to 5 during the pandemic. Adverse childhood experiences were negatively associated with parental resilience among this sample. Furthermore, frequency of child care was positively linked to protective factors and resilience. Implications for practice, policy, and research are discussed, with a particular focus on the role of child care and school openings during the pandemic.

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On-Call Duties: The Perceived Impact on Veterinarians' Job Satisfaction, Well-Being and Personal Relationships

Frontiers in Veterinary Science ◽

10.3389/fvets.2021.740852 ◽

2021 ◽

Vol 8 ◽

Author(s):

Lori Kogan ◽

Regina Schoenfeld-Tacher ◽

Patrick Carney ◽

Peter Hellyer ◽

Mark Rishniw

Keyword(s):

Job Satisfaction ◽

Linear Regression ◽

Multiple Linear Regression ◽

Online Survey ◽

Negative Impact ◽

Well Being ◽

The United States ◽

Personal Relationships ◽

Information Network ◽

The Impact

Objective: To assess the impact of on-call duties on veterinarians' job satisfaction, well-being and personal relationships.Design: Cross-sectional survey.Sample: The sample was obtained from Veterinary Information Network (VIN) members in private practice within the United States.Procedures: A link to an anonymous online survey was distributed via an email invitation to all Veterinary Information Network (VIN) members with access from August 15, 2017 to October 21, 2017.Results: A total of 1,945 responses were recorded. The majority of those who reported having on-call duties were female associates. Composite scales were created to assess the impact of on-call shifts on job satisfaction and well-being. Multiple linear regression was conducted and found that gender (p = 0.0311), associate status (p < 0.0001), and age (p = 0.0293) were all significantly associated with on-call related job satisfaction. Additionally, multiple linear regression found that gender (p = 0.0039), associate status (p < 0.0057), and age (p < 0.0001) were all significantly associated with on-call related well-being. On-call shifts were reported by many to have a negative impact on job satisfaction and well-being; this was especially pronounced for female associates. Females had on-call related job satisfaction scores that were, on average, 1.27 points lower than that of males (lower scores equates to lower job satisfaction). Further, females' average on-call related well-being scores were 1.15 points higher than that of males (lower scores equates to higher well-being).Conclusions and Clinical Relevance: This study suggests that on-call shifts have a negative impact on veterinarian job satisfaction, well-being and personal relationships. The negative impact on job satisfaction and well-being is greatest for female associates. Veterinary medicine has been identified as a stressful occupation that can lead to psychological distress. It is therefore important to critically assess current practices that appear to increase stress and reduce emotional well-being. For this reason, it is suggested that veterinary hospitals explore alternative options to traditional on-call shifts.

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Proactive Coping and Mindfulness are Associated with Less Stress in Older Adults

Innovation in Aging ◽

10.1093/geroni/igab046.3271 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 909-909

Author(s):

Lyndsey Graham ◽

Shevaun Neupert

Keyword(s):

Older Adults ◽

Online Survey ◽

Negative Impact ◽

Well Being ◽

The United States ◽

Proactive Coping ◽

Present Moment ◽

Life Event ◽

Study Results ◽

The Impact

Abstract We examined the consequences of both chronic and life-event stressors for older adults, as well as antecedent strategies, such as proactive coping and mindfulness, that may mitigate stress. Given the potential negative outcomes associated with stress in older adulthood, exploring strategies to reduce or mitigate the negative impact of stress may be useful in promoting well-being in adulthood. Proactive coping involves an accumulation of resources that leads to reduced or avoided stressors in the future (Aspinwall & Taylor, 1997). Mindfulness calls an individual’s attention to the present moment, or may be characterized as an open, accepting attitude (Brown & Ryan, 2003). Using data from the Mindfulness and Anticipatory Coping Everyday study (English et al., 2019; Neupert & Bellingtier, 2017), 296 older adults in the United States, aged 60-90 years (M = 64.67, SD = 4.36), participated in relevant online survey measures. Results from multiple regression analyses suggested that people high in both chronic stress and life event stress had worse health, and that people high in proactive coping and mindfulness reported less stress. Study results underscore the impact of stress on health outcomes, and provide support for the use of antecedent strategies to address negative impacts of stress.

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COVID-19 and vision impairment: Constraints negotiation, participation, and well-being during lockdown in the United Kingdom

British Journal of Visual Impairment ◽

10.1177/02646196211009931 ◽

2021 ◽

pp. 026461962110099

Author(s):

Nigel Halpern ◽

Jillian M Rickly ◽

Marcus Hansen ◽

John Fellenor

Keyword(s):

United Kingdom ◽

Structural Equation ◽

Online Survey ◽

Well Being ◽

Vision Impairment ◽

Negative Effects ◽

The United Kingdom ◽

Negative Effect ◽

Constraints Negotiation ◽

The Uk

In response to the Coronavirus disease, the United Kingdom (UK) government introduced lockdown measures requiring people to isolate and adhere to social distancing. This article uses Constraints Negotiation Theory to examine effects of the lockdown on people with vision impairment (PwVI). The research is based on an online survey of 639 PwVI in the UK. The analysis was conducted using partial least squares structural equation modelling in SmartPLS. The findings show that the lockdown had a negative effect on the participation and well-being of PwVI. However, they also show that the negative effects could be negotiated by adapting activities. This emphasises the need for a more inclusive response to current or future pandemics that recognises the vulnerabilities of PwVI and helps them to overcome the challenges associated with any measures that are introduced.

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A mixed methods study of the psychological impact of the COVID-19 pandemic on American life

10.31234/osf.io/tjz32 ◽

2021 ◽

Author(s):

Alayna Park ◽

Clarissa V. Velez

Keyword(s):

Social Interactions ◽

Psychological Stress ◽

Online Survey ◽

Psychological Impact ◽

Well Being ◽

The United States ◽

Social Stressors ◽

Quality Of Work ◽

The Impact

This study examined the psychological impact of the COVID-19 pandemic on American daily life. In May 2020, adults living in the United States (N=345; 63% European American; 64% male) completed an online survey on their functioning, psychological stress, and health locus of control. Inductive thematic analysis was used to identify themes in qualitative responses about the impact of the COVID-19 pandemic. Themes included, but were not limited to, impacts on employment and finances (“I have not been paid a dime for the last eight weeks”), physical distancing practices (“I have left my neighborhood three times in eight weeks”), work environment (“I am working from home”), emotional well-being (“I feel stressed, anxious, and nervous pretty much all the time”), and social support (“I miss seeing and being with my friends and family”). Results showed moderate correlations between changes in mood and concentration, time spent caregiving and quality of caregiving, quality of social interactions and quality of work, quality of social interactions and mood, time spent working and quality of work, and number of social interactions and quality of social interactions. Being an essential worker and holding beliefs that health is determined by others and chance but not themselves was associated with increased psychological stress; holding beliefs that health is determined by others and chance also predicted changes in functioning. These findings supplement existing knowledge about the psychological impact of the COVID-19 pandemic and highlight opportunities for promoting well-being and functioning as Americans recover from consequent health, economic, and social stressors.

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Double-Edged Sword Effect of High-Performance Work System on Employee Well-Being—Moderating Effect of Union Practice

Frontiers in Psychology ◽

10.3389/fpsyg.2021.619345 ◽

2021 ◽

Vol 12 ◽

Author(s):

Wei Qi ◽

Hu Enhua ◽

Sun Jiandong ◽

Shan Hongmei

Keyword(s):

Work Stress ◽

Organizational Support ◽

High Performance ◽

Perceived Organizational Support ◽

Well Being ◽

Negative Effects ◽

Work System ◽

Negative Effect ◽

High Performance Work System ◽

The Impact

Improving the well-being of the employees is the inevitable choice to improve corporate performance and competitive advantage and the social responsibility that enterprises must undertake. Based on the job demands-resources model, this study introduces perceived organizational support and work stress as the mediator and trade union practice as the moderator to explore the double-edged sword effect of a high-performance work system (HPWS) on the well-being of the employee. Taking 243 employees from Jiangsu, Zhejiang, and Anhui as samples, we found that HPWS positively affects the well-being of the employee through perceived organizational support and negatively affects the well-being of the employee through work stress. Union practices can significantly reduce the positive effect of HPWS on work stress and further weaken the negative effect of HPWS on the well-being of the employee through work stress. The results of this study provide a new way to explain the impact of the HPWS on the well-being of the employees and find that union practice can weaken the negative effects of HPWS. This study provides a new thinking direction for improving the well-being of employees in enterprises.

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Social Contribution and Psychological Well-Being among Midlife Adults with Chronic Pain: A Longitudinal Approach

Journal of Aging and Health ◽

10.1177/0898264320947293 ◽

2020 ◽

Vol 32 (10) ◽

pp. 1591-1601

Author(s):

Nguyen P. Nguyen ◽

Shin Ye Kim ◽

Jacob Daheim ◽

Ashley Neduvelil

Keyword(s):

Social Support ◽

Chronic Pain ◽

Well Being ◽

The United States ◽

Protective Role ◽

Negative Effects ◽

Psychological Well Being ◽

Positive Effects ◽

Social Contribution ◽

Negative Effect

Objectives: Contributing to the welfare of others has been shown to have positive effects on people’s social and psychological well-being (PWB). The current study examined whether social contribution (SC) could alleviate the negative effects of chronic pain on PWB through perceived social support (PSS) among midlife and older adults. Methods: The study consisted of 520 participants with chronic pain from the two waves of the Midlife in the United States dataset (MIDUS II and III). Results: Results from the longitudinal moderated mediation analysis indicated that SC at Time 2 (T2) significantly buffered the negative effect of pain interference (PI) at Time 1 (T1) on PSS at T2, which indirectly alleviated the negative effect of PI at T1 on PWB at T2. Discussion: The study suggested the protective role of SC and prosocial behaviors in mitigating the detrimental effects of chronic pain on social support and PWB.

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Multiple Sclerosis Progression Discussion Tool: Usability and Usefulness in Clinical Practice (Preprint)

10.2196/preprints.29558 ◽

2021 ◽

Author(s):

Tjalf Ziemssen ◽

Gavin Giovannoni ◽

Enrique Alvarez ◽

Virender Bhan ◽

Carrie Hersh ◽

...

Keyword(s):

Multiple Sclerosis ◽

Clinical Practice ◽

Cognitive Function ◽

Disease Progression ◽

Online Survey ◽

Likert Scale ◽

Daily Clinical Practice ◽

Daily Activities ◽

Final Questionnaire ◽

The Impact

BACKGROUND A digital tool (Multiple Sclerosis Progression Discussion tool, MSProDiscuss) was developed to facilitate a discussion between a healthcare professional (HCP) and patient in evaluating early, subtle signs of multiple sclerosis (MS) disease progression. OBJECTIVE To report findings on the usability and usefulness testing of the MSProDiscuss tool in the real-world clinical setting. METHODS In this cross sectional, online survey, HCPs across 34 countries completed an initial individual questionnaire (comprising 7 questions on comprehensibility, usability and usefulness after using MSProDiscuss during each patient consultation) and a final questionnaire (comprising 13 questions on comprehensibility, usability and usefulness, and integration and adoption into clinical practice to capture their overall experience on using the tool). Responses were provided on a 5-point Likert scale. All analyses were descriptive, and no statistical comparisons were made. RESULTS In total, 301 HCPs tested the tool in 6974 MS patients, of which 77% were relapsing remitting MS patients including those suspected to be transitioning to secondary progressive MS. The time taken to complete MSProDiscuss was 1-4 minutes in 97% (initial) to 98% (final) of the cases. In 94% (initial) to 97% (final) cases, HCPs agreed (4 or 5 on the Likert scale) that patients were able to comprehend the questions from the tool. HCPs were willing to use the tool again in the same patient 91% (initial) of the cases. MSProDiscuss was useful in discussing MS symptoms and their impact on daily activities (88% initial and 92% final) and cognitive function (79% for both initial and final) and in discussing progression in general (88% initial and 90% final). While completing the final questionnaire, 95% of HCPs agreed that the questions were similar to those asked in regular consultation and the tool helped to better understand the impact of MS symptoms on daily activities (91%) and cognitive function (80%). Overall, 92% of the HCPs would recommend MSProDiscuss to a colleague, and 86% are willing to integrate it into their clinical practice. CONCLUSIONS MSProDiscuss is a usable and useful tool to facilitate a physician-patient discussion on disease progression in daily clinical practice. Most HCPs agreed that the tool is easy to use and were willing to integrate MSProDiscuss into their daily clinical practice.

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Perceptions of Prominent Animal Welfare and Veterinary Care Organizations in the United States

Animals ◽

10.3390/ani10030472 ◽

2020 ◽

Vol 10 (3) ◽

pp. 472

Author(s):

Mario Ortez ◽

Courtney Bir ◽

Nicole Olynk Widmar ◽

Christopher A. Wolf

Keyword(s):

Health Care ◽

Animal Welfare ◽

Online Survey ◽

Well Being ◽

The United States ◽

Likert Scale ◽

Perceived Impact ◽

American Society ◽

High Level ◽

The Impact

U.S. residents’ perceptions of the impact of prominent animal welfare and veterinary care organizations on pet animal well-being and health care may not be linked to the organization’s stated mission and effectiveness in advancing it, but to the level of recognition people have for the groups. An online survey of 1000 U.S. residents was used to understand the perceived impact of organizations with self-stated dedication to pet animal well-being. Using a Likert-scale, respondents ranked 13 prominent organizations as having a low to high impact on pet animal well-being and health care. The American Society for the Prevention of Cruelty to Animals (ASPCA) had the highest perceived average impact, while People for the Ethical Treatment of Animals (PETA) had the lowest. A best–worst scaling (BWS) choice experiment was conducted with 7 of the initial 13 organizations to elicit relative rankings by forcing tradeoffs by respondents. Consistent with the Likert-scale results, the ASPCA was ranked as the most impactful organization. The ASPCA’s perceived impact on pet animal well-being and health care may be linked to their high level of recognition among respondents, as this was the organization that respondents most frequently reported having seen/heard stories related to animal well-being and health care.

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