scholarly journals (Preprint)

2017 ◽  
Author(s):  
Andrea Giordano ◽  
Katrin Liethmann ◽  
Sascha K�pke ◽  
Jana Poettgen ◽  
Anne Rahn ◽  
...  
Keyword(s):  
Online Survey ◽  
Unmet Need ◽  
Data Interpretation ◽  
Preference Scale ◽  
Disease Modifying Drugs ◽  
Knowledge Questionnaire ◽  
Relapsing Remitting ◽  
Patient Questionnaires ◽  
The Uk ◽  
Risk Knowledge

BACKGROUND Adequate risk knowledge of people with Multiple Sclerosis (pwMS) is a prerequisite for informed choices in medical encounters. Previous work showed that MS risk knowledge is low among pwMS and role preferences are different in Italy and Germany. OBJECTIVE We investigated the level of risk knowledge and role preferences in 8 countries and assessed putative variables associated with risk knowledge. METHODS An online-survey was performed based on the Risk knowledge questionnaire for people with relapsing-remitting MS (RIKNO 2.0), the electronic Control Preference Scale (eCPS), and other patient questionnaires. RESULTS Of 1939 participants from Germany, Italy, the Netherlands, Serbia, Spain and Turkey, 986 (51%) completed the RIKNO 2.0, with a mean of 41% correct answers. There were less than 50 participants in the UK and Estonia and data were not analysed. Risk knowledge differed across countries (P < .001). Variables significantly associated with higher risk knowledge were higher education (P < .001), previous experience with disease modifying drugs (P = .001), correct answer to a medical data interpretation question (P < .001), while higher fear for wheelchair dependency was negatively associated to risk knowledge (P = .001). CONCLUSIONS MS risk knowledge was overall low and differed across participating countries. These data indicate that information is an unmet need of most pwMS. CLINICALTRIAL Not applicable.

scholarly journals Patient Experiences of Postinfectious Olfactory Dysfunction

ORL ◽  
2021 ◽  
pp. 1-5
Author(s):  
Carl M Philpott ◽  
James Boardman ◽  
Duncan Boak
Keyword(s):  
Online Survey ◽  
Unmet Need ◽  
Olfactory Dysfunction ◽  
Treatment Modalities ◽  
Medical Practitioners ◽  
Clinical Trials Unit ◽  
New Treatment ◽  
The Uk ◽  
Patients Experience ◽  
Age Range

<b><i>Introduction:</i></b> To highlight the importance of the need for new treatment modalities, this study aimed to characterise the experience of patients with postinfectious olfactory dysfunction (PIOD) in terms of the treatment they received. <b><i>Methods:</i></b> An online survey was hosted by the Norwich Clinical Trials Unit on the secure REDCap server. Members of the charity Fifth Sense (the UK charity that represents and supports people affected by smell and taste disorders) were invited to participate. <b><i>Results:</i></b> There were 149 respondents, of whom 127 had identified themselves as having (or had) PIOD. The age range of respondents to the survey was 28–85 years, with a mean of 58 ± 12 years, with the duration of their disorder &#x3c;5 years in 63% of cases. Respondents reported experiencing variable treatment with oral and/or intranasal steroids given typically (28%), often with no benefit, but with 50% receiving no treatment whatsoever; only 3% reported undertaking olfactory training. Over two-thirds of patients experience parosmia and, up to 5 years from the onset of the problem, were still actively seeking a solution. <b><i>Conclusion:</i></b> There appears to be a need to encourage greater use of guidelines for olfactory disorders amongst medical practitioners and also to develop more effective treatments for patients with PIOD, where there is clearly an unmet need.

scholarly journals Survey of young people in one region of the UK on accessing COVID-19 information (SOCIAL)

2021 ◽  
Vol 5 (1) ◽  
pp. e000942
Author(s):  
Oliver G P Lawton ◽  
Sarah A Lawton ◽  
Lisa Dikomitis ◽  
Joanne Protheroe ◽  
Joanne Smith ◽  
...  
Keyword(s):  
Social Media ◽  
Young People ◽  
Significant Role ◽  
Online Survey ◽  
Descriptive Statistics ◽  
Sources Of Information ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Education Gaps ◽  
The Uk

COVID-19 has significantly impacted young people’s lives yet little is known about the COVID-19 related sources of information they access. We performed a cross-sectional survey of pupils (11–16 years) in North Staffordshire, UK. 408 (23%) pupils responded to an online survey emailed to them by their school. Descriptive statistics were used to summarise the data. Social media, accessed by 68%, played a significant role in the provision of information, despite it not being considered trustworthy. 89% felt that COVID-19 had negatively affected their education. Gaps in the provision of information on COVID-19 have been identified.

scholarly journals Experiences and impact of international medical volunteering: a multi-country mixed methods study

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e041599 ◽  
Author(s):  
Mary McCauley ◽  
Joanna Raven ◽  
Nynke van den Broek
Keyword(s):  
Low Income ◽  
Online Survey ◽  
Positive Impact ◽  
Healthcare Providers ◽  
International Medical ◽  
Middle Income ◽  
Use Of Resources ◽  
The Uk ◽  
Medical Volunteers ◽  
The Impact

ObjectiveTo assess the experience and impact of medical volunteers who facilitated training workshops for healthcare providers in maternal and newborn emergency care in 13 countries.SettingsBangladesh, Ghana, India, Kenya, Malawi, Namibia, Nigeria, Pakistan, Sierra Leone, South Africa, Tanzania, UK and Zimbabwe.ParticipantsMedical volunteers from the UK (n=162) and from low-income and middle-income countries (LMIC) (n=138).Outcome measuresExpectations, experience, views, personal and professional impact of the experience of volunteering on medical volunteers based in the UK and in LMIC.ResultsUK-based medical volunteers (n=38) were interviewed using focus group discussions (n=12) and key informant interviews (n=26). 262 volunteers (UK-based n=124 (47.3%), and LMIC-based n=138 (52.7%)) responded to the online survey (62% response rate), covering 506 volunteering episodes. UK-based medical volunteers were motivated by altruism, and perceived volunteering as a valuable opportunity to develop their skills in leadership, teaching and communication, skills reported to be transferable to their home workplace. Medical volunteers based in the UK and in LMIC (n=244) reported increased confidence (98%, n=239); improved teamwork (95%, n=232); strengthened leadership skills (90%, n=220); and reported that volunteering had a positive impact for the host country (96%, n=234) and healthcare providers trained (99%, n=241); formed sustainable partnerships (97%, n=237); promoted multidisciplinary team working (98%, n=239); and was a good use of resources (98%, n=239). Medical volunteers based in LMIC reported higher satisfaction scores than those from the UK with regards to impact on personal and professional development.ConclusionHealthcare providers from the UK and LMIC are highly motivated to volunteer to increase local healthcare providers’ knowledge and skills in low-resource settings. Further research is necessary to understand the experiences of local partners and communities regarding how the impact of international medical volunteering can be mutually beneficial and sustainable with measurable outcomes.

scholarly journals How is the COVID-19 lockdown impacting the mental health of parents of school-age children in the UK? A cross-sectional online survey

BMJ Open ◽  
2021 ◽  
Vol 11 (5) ◽  
pp. e043397
Author(s):  
Austen El-Osta ◽  
Aos Alaa ◽  
Iman Webber ◽  
Eva Riboli Sasco ◽  
Emmanouil Bagkeris ◽  
...  
Keyword(s):  
Mental Health ◽  
Physical Activity ◽  
Social Isolation ◽  
Online Survey ◽  
Female Gender ◽  
School Age Children ◽  
School Age ◽  
Cross Sectional ◽  
The Uk ◽  
The Impact

ObjectiveInvestigate the impact of the COVID-19 lockdown on feelings of loneliness and social isolation in parents of school-age children.DesignCross-sectional online survey of parents of primary and secondary school-age children.SettingCommunity setting.Participants1214 parents of school-age children in the UK.MethodsAn online survey explored the impact of lockdown on the mental health of parents with school-age children, and in particular about feelings of social isolation and loneliness. Associations between the UCLA Three-Item Loneliness Scale (UCLATILS), the Direct Measure of Loneliness (DMOL) and the characteristics of the study participants were assessed using ordinal logistic regression models.Main outcome measuresSelf-reported measures of social isolation and loneliness using UCLATILS and DMOL.ResultsHalf of respondents felt they lacked companionship, 45% had feelings of being left out, 58% felt isolated and 46% felt lonely during the first 100 days of lockdown. The factors that were associated with higher levels of loneliness on UCLATILS were female gender, parenting a child with special needs, lack of a dedicated space for distance learning, disruption of sleep patterns and low levels of physical activity during the lockdown. Factors associated with a higher DMOL were female gender, single parenting, parenting a child with special needs, unemployment, low physical activity, lack of a dedicated study space and disruption of sleep patterns during the lockdown.ConclusionsThe COVID-19 lockdown has increased feelings of social isolation and loneliness among parents of school-age children. The sustained adoption of two modifiable health-seeking lifestyle behaviours (increased levels of physical activity and the maintenance of good sleep hygiene practices) wmay help reduce feelings of social isolation and loneliness during lockdown.

scholarly journals 434 - Treatment Patterns and Needs for Dementia-related Psychosis Described by Patients and Care Partners (Caregivers): an Observational, Prospective Study to Describe the Patient Experience

2020 ◽  
Vol 32 (S1) ◽  
pp. 151-151
Author(s):  
Teresa Brandt ◽  
Theresa Frangiosa ◽  
Virginia Biggar ◽  
Angela Taylor ◽  
Bill Keller ◽  
...  
Keyword(s):  
Standard Deviation ◽  
Prospective Study ◽  
Online Survey ◽  
Atypical Antipsychotics ◽  
Qualitative Interviews ◽  
Unmet Need ◽  
Current Treatment ◽  
Treatment Patterns ◽  
Symptom Improvement ◽  
Vas Score

AbstractBackground:We aimed to describe current treatment patterns and unmet needs of persons with DRP from a patient and care partner (CP) perspective.Methods:This observational, non-interventional, prospective study used a mixed-methods approach with qualitative interviews and a quantitative online survey. Persons with DRP and CP of persons with DRP reported the effectiveness of current treatments using a visual analog scale (VAS) of 0 (“not at all well”) to 5 (“extremely well”) and ranked benefits of an ideal treatment. CP burden was outside the scope of this study.Results:The qualitative interview was completed by 1 patient and 15 CP. Current treatments included atypical antipsychotics, antidepressants, anxiolytics, and benzodiazepines. Participants commonly indicated a need to improve patients’ ability to know what is real vs not real.The online survey was completed by 26 patients and 186 CP on behalf of patients under their care. Common treatments used included atypical antipsychotics (27% of patients, 41% of CP) and psychological/ behavioral therapy (23% of patients, 8% of CP). Many participants reported no current treatment (42% of patients, 42% of CP). Participants reported that current treatment methods were less than moderately helpful in treating patients’ most impactful symptoms with a median VAS score of 2.0/5 reported by patients and CP (mean VAS score [standard deviation] = 2.33 [1.0] for patients [n=15], mean [standard deviation] VAS score = 2.4 [1.3] for CP [n=104]). Discontinuation of a treatment was reported by 11 patients and 115 CP, most commonly due to a side effect (27% of patients, 31% of CP), doctor’s recommendation (27% of patients, 14% of CP), or lack of symptom improvement (9% of patients, 28% of CP). Participants ranked the ability to distinguish what is real vs not real (35% of patients, 49% of CP) and overall symptom improvement (42% of patients, 23% of CP) as the most important benefits of an ideal treatment.Conclusions:Patients and CPs reported either not taking any DRP treatments or that current treatments were associated with side effects along with limited efficacy. There is an unmet need for safe and effective treatments for DRP.Study Sponsored By:ACADIA Pharmaceuticals Inc.DisclosuresTF is a consultant with Frangiosa & Associates, LLC.VB and AT have no relevant financial relationships to disclose.TB, BK, and VA are employees of and may hold stock and/or stock options with ACADIA Pharmaceuticals Inc.

scholarly journals Impact of COVID-19 pandemic social restriction measures on people with rheumatic and musculoskeletal diseases in the UK: a mixed-methods study

BMJ Open ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. e048772
Author(s):  
Toby O Smith ◽  
Pippa Belderson ◽  
Jack R Dainty ◽  
Linda Birt ◽  
Karen Durrant ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Qualitative Study ◽  
Online Survey ◽  
Musculoskeletal Diseases ◽  
Community Dwelling ◽  
Secondary Outcome ◽  
Healthcare Provision ◽  
Social Restriction ◽  
The Uk ◽  
The Impact

ObjectivesTo determine the impact of COVID-19 pandemic social restriction measures on people with rheumatic and musculoskeletal diseases (RMDs) and to explore how people adapted to these measures over time.DesignMixed-methods investigation comprising a national online longitudinal survey and embedded qualitative study.SettingUK online survey and interviews with community-dwelling individuals in the East of England.ParticipantsPeople in the UK with RMDs were invited to participate in an online survey. A subsection of respondents were invited to participate in the embedded qualitative study.Primary and secondary outcome measuresThe online survey, completed fortnightly over 10 weeks from April 2020 to August 2020, investigated changes in symptoms, social isolation and loneliness, resilience and optimism. Qualitative interviews were undertaken assessing participant’s perspectives on changes in symptoms, exercising, managing instrumental tasks such a shopping, medication and treatment regimens and how they experienced changes in their social networks.Results703 people with RMDs completed the online survey. These people frequently reported a deterioration in symptoms as a result of COVID-19 pandemic social restrictions (52% reported increase vs 6% reported a decrease). This was significantly worse for those aged 18–60 years compared with older participants (p=0.017). The qualitative findings from 26 individuals with RMDs suggest that the greatest change in daily life was experienced by those in employment. Although some retired people reported reduced opportunity for exercise outside their homes, they did not face the many competing demands experienced by employed people and people with children at home.ConclusionsPeople with RMDs reported a deterioration in symptoms when COVID-19 pandemic social restriction measures were enforced. This was worse for working-aged people. Consideration of this at-risk group, specifically for the promotion of physical activity, changing home-working practices and awareness of healthcare provision is important, as social restrictions continue in the UK.

scholarly journals The impact of sitting time and physical activity on mental health during COVID-19 lockdown

2021 ◽  
Author(s):  
Matthew Pears ◽  
Susanna Kola-Palmer ◽  
Liane Beretta De Azevedo
Keyword(s):  
Mental Health ◽  
Physical Activity ◽  
Health Outcomes ◽  
Online Survey ◽  
Depression Score ◽  
Sitting Time ◽  
Multiple Stepwise Regression Analysis ◽  
Previous Diagnosis ◽  
The Uk ◽  
The Impact

Abstract Objective The primary aim of this study was to investigate the association between physical activity (PA) and sitting time on adults’ mental health (i.e., depression, anxiety and wellbeing) and the influence of mediators and confounders. Methods An online survey was disseminated in the UK between May and June 2020. A total of 284 participants (33.5 ± 12.4 years) self-reported their PA, sitting time and mental health through validated questionnaires. Results Multiple stepwise regression analysis revealed that being of younger age, female, on a lower income, with one or more comorbid health conditions, with a previous diagnosis of mood disorder and increased sitting time independently correlated with higher depression scores (F (13,219) = 12.31, p < 0.001), and explained 42% of the variance. Similar results were found for wellbeing where socio-demographic, health outcomes and sitting time influenced the subjective wellbeing (F (14,218) = 5.77, p < 0.001, 27% variance), although only socio-demographic and health outcomes contributed to the variation in anxiety score (F (13,219) = 7.84, p < 0.001, 32% variance). PA did not explain variation when sitting time was taken into account in any of the models. Combined analysis revealed that participants with lower sedentary time (< 8 h) and with both low or moderate and high PA presented a significantly lower depression score [low PA: (B = −2.7, 95% CI −4.88, −0.52); moderate and high PA (B = −2.7, −4.88, −0.52)]. Conclusion Sitting time was strongly associated with adverse mental health during COVID-19 lockdown and should be considered in future public health recommendations.

scholarly journals Mental Health, Information and Being Connected: Qualitative Experiences of Social Media Use during the COVID-19 Pandemic from a Trans-National Sample

Healthcare ◽  
2021 ◽  
Vol 9 (6) ◽  
pp. 735
Author(s):  
Schoultz Mariyana ◽  
Leung Janni ◽  
Bonsaksen Tore ◽  
Ruffolo Mary ◽  
Thygesen Hilde ◽  
...  
Keyword(s):  
Mental Health ◽  
Social Media ◽  
Health Information ◽  
Online Survey ◽  
Negative Impact ◽  
National Study ◽  
Free Text ◽  
Cross Sectional ◽  
Mental Health Information ◽  
The Uk

Background: Due to the COVID-19 pandemic and the strict national policies regarding social distancing behavior in Europe, America and Australia, people became reliant on social media as a means for gathering information and as a tool for staying connected to family, friends and work. This is the first trans-national study exploring the qualitative experiences and challenges of using social media while in lockdown or shelter-in-place during the current pandemic. Methods: This study was part of a wider cross-sectional online survey conducted in Norway, the UK, USA and Australia during April/May 2020. The manuscript reports on the qualitative free-text component of the study asking about the challenges of social media users during the COVID-19 pandemic in the UK, USA and Australia. A total of 1991 responses were included in the analysis. Thematic analysis was conducted independently by two researchers. Results: Three overarching themes identified were: Emotional/Mental Health, Information and Being Connected. Participants experienced that using social media during the pandemic amplified anxiety, depression, fear, panic, anger, frustration and loneliness. They felt that there was information overload and social media was full of misleading or polarized opinions which were difficult to switch off. Nonetheless, participants also thought that there was an urge for connection and learning, which was positive and stressful at the same time. Conclusion: Using social media while in a shelter-in-place or lockdown could have a negative impact on the emotional and mental health of some of the population. To support policy and practice in strengthening mental health care in the community, social media could be used to deliver practical advice on coping and stress management. Communication with the public should be strengthened by unambiguous and clear messages and clear communication pathways. We should be looking at alternative ways of staying connected.

Sign in / Sign up

Export Citation Format

Share Document