OP80 Impact Of Patient Group Participation At Scottish Medicines Consortium Committee Meetings

2019 ◽  
Vol 35 (S1) ◽  
pp. 20-20
Author(s):  
Jennifer Dickson ◽  
Lindsay Lockhart ◽  
Louise Taylor ◽  
Jackie McCormack ◽  
Laura Walker
Keyword(s):  
Quality Of Life ◽  
Patient Group ◽  
Patient Engagement ◽  
Online Survey ◽  
Public Involvement ◽  
The Public ◽  
Group Participation ◽  
Emerging Themes ◽  
The Impact

IntroductionThe Scottish Medicines Consortium (SMC) encourages patient group (PG) representatives to participate in the decision-making committee meetings, answering questions from committee members and providing points of clarity throughout discussions if required. In a continuous improvement approach the process and the participant experience is continually evaluated to monitor impact and emerging themes.MethodsThe interactions between committee members and PG representatives are recorded in writing by the public involvement team to monitor the questions or points of clarity raised. These interactions were analyzed using thematic analysis to look for emerging themes. Following the meeting, PG representatives are invited to complete an online survey on their experience of working with SMC.ResultsFrom July 2017 to October 2018, 36 PG representatives have attended committee meetings for the discussion of their submission. Committee members asked 17 PG representatives to contribute. Key themes that have emerged to date include insight into the impact of living with the condition on quality of life and how a new medicine may affect this. Survey feedback has been positive with participants reporting that patient engagement has been strengthened, and that the patient voice is heard, valued and supports committee members in making fully informed decisions. PG representatives expressed a willingness to participate again. Feedback also highlighted that the preparatory support offered to PG representatives by the public involvement team is highly valued.ConclusionsPatient group participation in committee meetings has been received positively by PG representatives. They report that discussions relating to quality of life impact of medicines on patients and carers better reflect the lived experience, enriching committee's deliberations. This demonstrates SMCs commitment to openness and transparency and has strengthened patient engagement in our processes.

OP27 Patient Engagement At Scottish Medicines Consortium Committee Meetings

2018 ◽  
Vol 34 (S1) ◽  
pp. 11-11
Author(s):  
Lindsay Lockhart ◽  
Jennifer Dickson ◽  
Anne Lee ◽  
Peter McGrath ◽  
Yvonne Hughes
Keyword(s):  
Lived Experience ◽  
Patient Group ◽  
Patient Engagement ◽  
Online Survey ◽  
Public Involvement ◽  
Advisory Group ◽  
Willingness To Participate ◽  
The Public ◽  
Group Participation ◽  
Patient Groups

Introduction:Since 2014 patient group representatives have been able to observe Scottish Medicines Consortium (SMC) committee meetings as members of the public. However, they have had no opportunity to participate in discussions on their submission on the patient experience of living with the condition under review. In 2017, to strengthen patient engagement, we revised our processes to enable representatives from all submitting patient groups to play a bigger part in the monthly meeting.Methods:The SMC Public Involvement Network (PIN) Advisory Group consulted on potential issues around patient group participation in committee meetings. Recommendations approved for implementation included (i) provision of comprehensive information and support to participating patient group representatives, and (ii) holding an educational session for SMC members on ‘What matters to the patient’. The process change was introduced in June 2017. Patient group representatives are invited to complete an online survey on their experience of taking part in the meeting and working with the public involvement team. Implementation is being monitored and will be evaluated in a commitment to continuous improvement.Results:Since June 2017, 14 patient group representatives have attended SMC meetings for the discussion of their submission. This has enabled them to answer questions from committee members and clarify points relating to their submission, if required. Early feedback has been positive with participants believing that patient engagement has been strengthened and that the patient voice was heard and valued. Patient groups expressed a willingness to participate again. The evaluation of their experience to date will be presented.Conclusions:SMC now involves patient group participation at committee meetings, demonstrating commitment to listening and responding to stakeholders on patient engagement. Early feedback has been positive and suggests that discussions relating to quality of life impact on patients and carers better reflect the lived experience. This ensures we are meeting our commitment to openness and transparency and strengthens patient engagement in our process.

scholarly journals The Impact of COVID-19 Pandemic and Lockdown Measures on Quality of Life among Italian General Population

2021 ◽  
Vol 10 (2) ◽  
pp. 289 ◽  
Author(s):  
Maria Stella Epifanio ◽  
Federica Andrei ◽  
Giacomo Mancini ◽  
Francesca Agostini ◽  
Marco Andrea Piombo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Online Survey ◽  
Physical Space ◽  
Sampling Strategy ◽  
World Health ◽  
Snowball Sampling ◽  
World Health Organization Quality ◽  
The World ◽  
The Impact

The COVID-19 pandemic that has hit the world in the year 2020 has put a strain on our ability to cope with events and revolutionized our daily habits. On 9 March, Italy was forced to lockdown to prevent the spread of the infection, with measures including the mandatory closure of schools and nonessential activities, travel restrictions, and the obligation to spend entire weeks in the same physical space. The aim of this study was to assess the impact of the COVID-19 pandemic and lockdown measures on quality of life (QoL) in a large Italian sample, in order to investigate possible differences in QoL levels related to both demographic and pandemic-specific variables. A total of 2251 Italian adults (1665 women, mainly young and middle adults) were recruited via a snowball sampling strategy. Participants were requested to answer to an online survey, which included demographic and COVID-related information items, and the World Health Organization Quality of Life BREF questionnaire (WHOQOL-BREF). The results showed statistically significant differences in QoL depending on a number of variables, including sex, area of residence in Italy, and being diagnosed with a medical/psychiatric condition. To our knowledge, this is the first study to assess QoL during COVID-19 pandemic in Italy, therefore the present findings can offer guidelines regarding which social groups are more vulnerable of a decline in QoL and would benefit of psychological interventions.

scholarly journals Attitudes About COVID-19 and Health: A Mixed-Methods Smartphone-App and Online Survey Study (Preprint)

2021 ◽  
Author(s):  
Anna M. Hood ◽  
Hanne Stotesbury ◽  
Jennifer Murphy ◽  
Melanie Kölbel ◽  
April Slee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Data Collection ◽  
Physical Health ◽  
Online Survey ◽  
Smartphone App ◽  
The Uk ◽  
The Impact ◽  
Monthly Survey

BACKGROUND Behavioral mitigation strategies to slow the spread of COVID-19 have resulted in sweeping lifestyle changes, with short and long-term psychological, well-being, and quality of life implications. The Attitudes About COVID-19 and Health (ATTACH) study focuses on understanding attitudes and beliefs whilst considering the impact on mental and physical health and the influence of broader demographic and geographic factors on attitudes, beliefs, and mental health burden. OBJECTIVE In this assessment of our first wave of data collection, we provide baseline cohort descriptives of ATTACH study participants in the United Kingdom (UK), United States of America (USA), and Mexico. Additionally, we assess responses to daily poll questions related to COVID-19 and conduct a cross-sectional analysis of baseline assessments collected in the UK between June 26 and October 31, 2020. METHODS The ATTACH study uses smartphone-app technology and online survey data collection. Participants completed poll questions twice daily related to COVID-19 and a monthly survey assessing mental health, social isolation, physical health, and quality of life. Poll question responses were graphed using 95% Clopper-Pearson (exact) tests with 95% confidence intervals. Pearson correlations, hierarchical linear regression analyses, and generalized linear models assessed relationships, predictors of self-reported outcomes, and group differences, respectively. RESULTS By October 31, 2020, 1405, 80, and 90 participants had consented to participate in the UK, USA, and Mexico, respectively. Descriptive data for the UK daily poll questions indicated that participants were generally following social distancing measures, but worry and negative impacts on families increased as the pandemic progressed. Although participants generally reported feeling that the reasons for current measures had been made clear, there was low trust that the government was doing everything in its power to meet public needs. In the UK, 1282 participants also completed a monthly survey (95% white, 72% female, 21% key or essential workers). Nineteen percent of UK participants reported a pre-existing mental health disorder, 31% reported a pre-existing chronic medical illness, and 35% were over 65. Fifty-seven percent of participants reported being more sedentary since the pandemic began, and 41% reported reduced access to medical care. Those with poorer mental health outcomes lived in more deprived neighborhoods, in larger households (ps < .05), had more pre-existing mental health disorders and medical conditions, and were younger than 65 years (all ps < .001). CONCLUSIONS Communities who have been exposed to additional harm during the COVID-19 pandemic were experiencing worse mental outcomes. Factors including having a medical condition, or living in a deprived neighborhood or larger household were associated with heightened risk. Future longitudinal studies should investigate the link between COVID-19 exposure, mental health, and sociodemographic and residential characteristics.

The war against the homeless: Frank Jordan, broken windows, and anti-homeless politics in San Francisco

2019 ◽  
pp. 63-81
Author(s):  
Sean Parson
Keyword(s):  
Quality Of Life ◽  
Public Space ◽  
San Francisco ◽  
Broken Windows ◽  
The Public ◽  
Matrix Quality ◽  
Physical Spaces ◽  
The Impact ◽  
The City

Chapter 4 discusses Mayor Frank Jordan’s (1992–1995) revanchist Matrix Quality of Life Program, which sought to enforce a broken-windows policing system in San Francisco. The impact of the policy was felt largely by the visible homeless in downtown San Francisco, who were regularly harassed and arrested by the police and forced out of the city. Because quality-of-life policing desires to sanitize the public space of disruptive and asocial behaviour, the public meals of Food Not Bombs near City Hall resisted the city’s attempt to criminalize homelessness. This chapter argues that the city attempted to construct the homeless as anti-citizens and exclude them from the political and physical spaces of the city.

National survey of advanced prostate cancer patients reveals disparity between perceptions and reality of treatment

2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 8590-8590
Author(s):  
T. N. Kirk ◽  
M. A. Moyad
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Online Survey ◽  
Treatment Options ◽  
Additional Treatment ◽  
Hormone Refractory ◽  
Strongly Agree ◽  
Additional Education ◽  
The Impact

8590 Background: Over 50,000 men developed hormone refractory prostate cancer (HRPC) in 2005 (CancerMetrics 2005). The objective of this analysis is to understand patient attitudes towards advancing prostate cancer (PC) and treatment. Methods: Patients were recruited from NexCura’s database of users and links from PC websites: UsTOO, PCRI, PCF and PAACT. Board certified physicians who treat HRPC were recruited by J. Reckner & Assoc. Responses were collected via online survey and analyzed by TSC, a division of Yankelovich. Grant funding from Abbott. The scale was “agree”, strongly agree”, “disagree” or “strongly disagree.” Results: 409 HRPC patients (P), 236 caregivers (C), 100 urologists (U) and 104 oncologists (O) participated. 45% of patients have metastatic HRPC. Mean patient age was 65.7 and age at diagnosis was 60.2. Conclusions: Many patients and caregivers have difficulty with advancing PC. Respondents recognize the survival benefit associated with chemotherapy, but attitude on its impact on quality of life varies significantly. Disparity exists between patients, caregivers and physicians on the impact of treatment on quality of life. Additional education, enhanced dialogue and additional treatment options are needed for HRPC patients, caregivers and physicians. [Table: see text] [Table: see text]

scholarly journals Prevalence of Skin Reactions and Self-Reported Allergies in 5 Countries with Their Social Impact Measured through Quality of Life Impairment

2021 ◽  
Vol 18 (9) ◽  
pp. 4501
Author(s):  
Samir Salah ◽  
Charles Taieb ◽  
Anne’ Laure Demessant ◽  
Marek Haftek
Keyword(s):  
Quality Of Life ◽  
Online Survey ◽  
Social Impact ◽  
Adult Population ◽  
Strong Association ◽  
Skin Barrier ◽  
Skin Reactions ◽  
Increased Risk ◽  
The Impact

Background: The prevalence of allergies increases worldwide. Allergies may increase the risk of skin reactions. Objective: To evaluate the prevalence of allergies and skin reactions in the adult population, the strength of their relationship, and their impact on the quality of life. Methods: An online survey was conducted in a representative population of 11,067 adults from China, USA, Brazil, Russia, and France. Results: Overall, 35.6% of respondents reported having allergies, they were predominantly fair-skinned women, and younger than responders reporting no allergy. Among patients reporting allergies, 68.6% declared that their allergy makes their skin reacts. A strong association between allergy and major skin reactions was observed, which were associated with skin discomforts such as itching, burning, and pain. Skin discomforts were associated with an increased risk of quality of life alteration. Conclusions: Quantifying the prevalence and the association of allergies with skin reactions and discomfort sensations is critical to evaluating the impact on quality of life. Since skin barrier alteration is hypothesized as a risk factor and a route of sensitization for allergy development, the daily use of topical treatments, such as moisturizers, could help prevent allergic skin reactions, discomfort and impaired quality of life in individuals with an altered skin barrier.

Evaluation of the Impacts of Epilepsy in Dogs on Their Caregivers

2017 ◽  
Vol 53 (3) ◽  
pp. 143-149 ◽  
Author(s):  
Julie A. Nettifee ◽  
Karen R. Munana ◽  
Emily H. Griffith
Keyword(s):  
Quality Of Life ◽  
Online Survey ◽  
Financial Burden ◽  
Medication Cost ◽  
Survey Tool ◽  
Chronic Disorder ◽  
Antiepileptic Medication ◽  
Pet Owner ◽  
The Impact

ABSTRACT Epilepsy is a common problem in dogs, and management of this chronic disorder requires a substantial commitment on the part of the pet owner. The aim of this study was to evaluate the impact of epilepsy in dogs on their owners, utilizing an online survey tool. A questionnaire was developed to explore a variety of factors, including seizure history, treatment, outcome, quality of life, costs associated with therapy, and sources of support. A total of 225 responses were obtained. The majority of respondents reported positive scores for overall quality of life, although scores were significantly lower for dogs with poorly controlled epilepsy and medication-related adverse effects. The median monthly expenditure for antiepileptic medication was $51–75. Despite the considerable financial burden placed on the dog owner, monthly medication cost was not associated with quality of life score. Few published reports follow dogs with epilepsy after diagnosis, and there is a growing need to understand the issues associated with long-term management of this population. The results of this study provide useful information that can help veterinary professionals educate owners and set expectations regarding treatment of seizures and quality of life for dogs with epilepsy.

scholarly journals The Impact of COVID-19 Related School Closures and SPORT CANCELLATIONS on the Health of Adolescent Athletes

2021 ◽  
Vol 9 (7_suppl3) ◽  
pp. 2325967121S0017
Author(s):  
Timothy McGuine ◽  
Kevin Biese ◽  
Scott Hetzel ◽  
Stephanie Kliethermes ◽  
Claudia Reardon ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Online Survey ◽  
Adolescent Athletes ◽  
School Closures ◽  
Interscholastic Sports ◽  
General Anxiety Disorder ◽  
General Anxiety ◽  
The Impact

Background: In March 2020, schools were closed to in-person teaching and interscholastic sports cancelled in an attempt to slow the spread of the COVID-19. Child health experts have stated that school closures may have profound psychosocial consequences for students and need further study. Hypothesis/Purpose: To identify how COVID-19 related school closures and sport cancellations impacted the health of adolescent athletes. Methods: Adolescent athletes in Wisconsin were recruited via social media to complete an online survey in May 2020 while schools were closed to in-person teaching and interscholastic and club sports were cancelled. Assessments included the: General Anxiety Disorder-7 Item (GAD-7) for anxiety, Patient Health Questionnaire-9 Item (PHQ-9) for depression, the Pediatric Functional Activity Brief Scale (PFABS) for physical activity, and the Pediatric Quality of Life Inventory 4.0 (PedsQL) for quality of life. PHQ-9, PFABS and PedsQL scores were compared with historical data (HD) of Wisconsin adolescent athletes (N = 5,231) collected during normal school and sport operations in the years 2016–2018. Results: A total of 3,243 (58% female, Age = 16.1+1.2 yrs., grades 9 – 12) participated in the study. May 2020 participants reported higher (worse) PHQ-9 scores than the HD participants (mean: 8.0 (95%CI: 7.8, 8.2) vs 3.3 (3.1, 3.5), p < 0.001) as well as a higher prevalence of moderate to severe levels of depression (32.9% vs 9.7%, p < 0.001). May 2020 Participants also reported lower (worse) PFABS scores (mean: 12.2 (95%CI: 11.9, 12.5) vs 24.7 (24.5, 24.9) p < 0.001) and lower (worse) PedsQL total scores compared to athletes in the HD group (78.4 (78.0, 78.8) vs. 90.9 (90.5, 91.3) p < 0.001). Females in May 2020 reported increased moderate and severe anxiety percentages than the males in May 2020 (27.7% vs 22.3%, p < 0.001). Conclusions: COVID-19 related school closures and sport cancellations in Wisconsin were associated with increased anxiety and depression as well as decreased physical activity and quality of life in adolescent athletes. The potential negative health impacts of prolonged school closures and sport cancellations should be taken into account when evaluating steps to limit the spread of COVID-19.

scholarly journals High School Sports During the CoVID-19 Pandemic: The Impact of Sport Participation on the Health of Adolescents

2021 ◽  
Author(s):  
Timothy A. McGuine ◽  
Kevin Biese ◽  
Scott J. Hetzel ◽  
Alison Schwarz ◽  
Stephanie Kliethermes ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
High School ◽  
High Schools ◽  
Online Survey ◽  
Sport Participation ◽  
Outcome Measure ◽  
Teaching Method ◽  
The Impact

ABSTRACT Context: During the fall of 2020, some high schools across the US allowed their students to participate in interscholastic sports while others cancelled or postponed their sport programs due to concerns regarding COVID-19 transmission. It is unknown what effect this has had on the physical and mental health of adolescents. Objective: Identify the impact of playing a sport during the COVID-19 pandemic on the health of student athletes. Design: Cross-sectional study. Setting: Sample recruited via email. Patients or Other Participants: 559 STATE-XXX high school athletes (age=15.7±1.2 yrs., female=44%) from 44 high schools completed an online survey in October 2020. A total of 171 (31%) athletes played (PLY) a fall sport, while 388 (69%) did not play (DNP). Main Outcome Measure(s): Demographics included: sex, grade and sports played. Assessments included the General Anxiety Disorder-7 Item (GAD-7) for anxiety, Patient Health Questionnaire-9 Item (PHQ-9) for depression, the Pediatric Functional Activity Brief Scale (PFABS) for physical activity, and the Pediatric Quality of Life Inventory 4.0 (PedsQL) for quality of life. Univariable comparisons between the two groups were made via t-tests or chi-square tests. Means for each continuous outcome measure were compared between the groups by ANOVA models that controlled for Age, Sex, Teaching method (Virtual, Hybrid, or In-person), and the % of students eligible for free lunch. RESULTS: PLY group participants were less likely to report moderate to severe symptoms of anxiety (PLY=6.6%, DNP=44.1%, p&lt;0.001) and depression (PLY=18.2%, DNP=40.4%, p&lt;0.001). PLY athletes reported higher (better) PFABS scores (mean: [95%CI]), (PLY=23.2[22.0,24.5], DNP=16.4[15.0,17.8], p &lt;0.001) and higher (better) PedsQL total scores (PLY=88.4[85.9,90.9], DNP=79.6[76.8,82.4], p &lt;0.001). CONCLUSIONS: Adolescents who played a sport during the COVID-19 pandemic reported fewer symptoms of anxiety and depression, as well as higher physical activity and quality of life scores compared to adolescent athletes who did not play a sport.

scholarly journals Relationship between Mindfulness and Quality of Life in Early Adulthood during the COVID-19 Pandemic

2021 ◽  
Vol 2 ◽  
pp. 13-16
Author(s):  
Marchelina Febe
Keyword(s):  
Quality Of Life ◽  
Quantitative Research ◽  
Early Adulthood ◽  
Primary Data ◽  
The Public ◽  
Corona Virus ◽  
Life Itself ◽  
Almost All ◽  
The Impact

This study aims to see whether awareness impacts the quality of life in early adulthood, especially during the Covid 19 pandemic. This research was conducted because Indonesia is currently experiencing the Corona Virus, better known as Covid 19, which is known to be known. This pandemic has a carom effect on many aspects. The public has started to feel the impact of the Corona Virus more than recently. Many people feel bored, cannot be productive, and even feel sad because of this situation. So that began to be done various ways to overcome this effect so as not to spread more widely. One of them is mindfulness, which is expected to affect how a person thinks and later will impact the quality of one’s life. The quality of life itself is very influential in a person’s life because it is related/covers almost all aspects of life, starting from emotional, social, and even physical in one’s life. If the quality of life is good, it cannot make someone feel prosperous and impact happiness, creativity, productivity, etc. Therefore, researchers want to see whether one’s awareness can affect aspects of the quality of life with this pandemic. This quantitative research uses a questionnaire as the primary data technique and uses SPSS ver.26 for data processing. The results showed that mindfulness has a relationship or can affect a person’s quality of life, especially individuals in early adulthood.

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