780 research outputs found

    The development and initial validation of an outcome measure for children and young people with life-limiting and life-threatening conditions

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    BackgroundThere is no validated outcome measure for use in children's palliative care outside of sub-Saharan Africa. Development of such a measure is required to realise the benefits of patient-centred outcome measure use that has been demonstrated in adult palliative care. Previous research into what is important to children and young people with life-limiting and life-threatening conditions has primarily focused on those with a cancer diagnosis. Much of this pre-existing research focuses on the perspectives of proxies, rather than those of the child or young person.AimTo develop an outcome measure, the children's palliative outcome scale (C-POS), for use by children and young people with life-limiting and life-threatening conditions and their families, and to establish face and content validity, comprehensiveness, comprehensibility, feasibility, and acceptability of use.MethodsA sequential mixed-methods study was conducted in three phases, following the principles of patient-reported outcome measurement design described by Rothrock and the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN).Phase 1 - gathering inputA systematic review was conducted with the aim of appraising the evidence on optimal recall period, response format and mode of administration to enable children and young people to participate in self-reporting on their health outcomes. A young person's advisory group was also consulted on the same topic.To inform face and content validity of C-POS a semi-structured qualitative interview study was conducted to seek the perspectives of children and young people, their parents/carers and siblings, health care professionals and NHS commissioners on priority symptoms, concerns, and care priorities. Participants were also asked to identify their preferences for the design of C-POS, in terms of recall period, response scale format and administration mode.Phase 2 - item generationPart 1: Parents and professionals with experience in caring for a child or young person with a life-limiting or life-threatening condition participated in a three-round modified ranking-type Delphi survey with the aim of establishing which outcomes identified in phase 1 of this thesis should be included in C-POS.Part 2: The young person’s advisory group were asked to select their priority outcomes from the items ranked in rounds 2 and 3 of the Delphi survey.Part 3: An item generation meeting was conducted with key stakeholders to develop initial C-POS versions based on the evidence collected so far.Phase 3 - item improvementCross-sectional cognitive interview study to establish acceptability, comprehensiveness, and comprehension of the initial C-POS versions within the target population.ResultsPhase 1 - gathering inputSystematic review: Findings showed that children under five years old cannot validly and reliably self-report health outcomes. Face scales demonstrated better psychometric properties than visual analogue or Likert scales. Computerised and paper scales generally show equivalent construct validity and children prefer computerised measures. Children seven years old and younger often think dichotomously so may need two response options. Those over eight years old can reliably use a three-point scale.Qualitative interview study: 106 participants were recruited: 26 children, 40 parents, 13 siblings, 15 health care professionals and 12 commissioners. Children found a short recall period and a visually appealing measure with 10 questions or fewer most acceptable. Children with life-limiting conditions were more familiar with using rating scales such as numeric and Likert than their healthy siblings and emphasised the importance of completing the measure alongside interactions with a healthcare professional. Parents assumed that electronic completion methods would be most feasible and acceptable but a small number of children preferred paper measures.Participants described many inter-related symptoms, concerns and care priorities impacting on all aspects of life. Data revealed an overarching theme of pursuing ‘normality’, described as children’s desire to undertake usual childhood activities. Parents need support with practical aspects of care to help realise this desire for normality.Phase 2 - item generationPart 1: Delphi survey (n=82). Ranking agreement between participants increased over the rounds, indicating movement towards consensus. Agreement between professional and parent ranking was poor. Professionals prioritised physical symptoms, whereas parents prioritised psychosocial and practical concerns.Part 2: 22 children and young people attended the young person's advisory group. They prioritised items related to living a ‘normal life’ such as seeing friends and attending school, in addition to items prioritised by the adult participants in the Delphi survey.Part 3: 22 participants attended the item generation meeting. Fiveage/developmental stage appropriPhase 3 - item improvementForty-eight individuals participated (36 parents; 12 children) in cognitive testing of the C-POS versions. This revealed challenges in the acceptability of some items for parents of non-verbal children and refinements were made. C-POS content and length were acceptable, and all questions were considered important. Parents reported that completing a measure that asks about what matters may be distressing but this is anticipated and acceptable.ConclusionsThis thesis demonstrates the development of the first UK patient-centred outcome measure for use with children and young people with life-limiting and life-threatening conditions and their families. By following established methodological criteria for patient-centred outcome measure development this thesis demonstrates that CPOS has robust face and content validity and is feasible and acceptable for use within the target population.</div

    Reshaping Higher Education for a Post-COVID-19 World: Lessons Learned and Moving Forward

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    The Effect of an American Heart Association–Approved Exercise Regimen on Burnout in Nurse Practitioners and Physician Assistants Working in Emergency Departments

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    Burnout is a widely known state of physical and emotional fatigue previously noted to affect as many as 60% of healthcare providers, but one that is understudied in nurse practitioners and physician assistants working in emergency departments. It is imperative that the providers of healthcare recognize in themselves signs of burnout and have resources available to mitigate the condition. A pretest–posttest, quasi-experimental, nonequivalent control group, descriptive research design with descriptive statistics analysis was used to analyze answers to an email-based survey sent to nurse practitioners and physician assistants working for one large emergency medicine staffing company. The intent of this quasi-experimental DNP project was to (a) determine burnout in nurse practitioners and physician assistants working in emergency departments and (b) determine if meeting the minimum exercise standards set by the American Heart Association and the U.S. Department of Health and Human Services decreased burnout in the population being studied. The 2-Question Summative Score was used to determine burnout, and the Exercise Vital Sign questionnaire was used to determine exercise requirements. Findings included 88% of the population being studied suffered from burnout before the study intervention. Of those who participated in the exercise intervention, 75% experienced a decrease in burnout score. After study participation, there was a 10% overall total reduction from the burnout category to the nonburnout category, and 58% of all participants had improvement in burnout scores during the study period

    Full Issue: Volume 19, Number 1 - Summer 2023

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    A publication for friends and colleagues of Jefferson’s Department of Surgery In This Issue Cover StoryNicoletti Kidney Transplant Center Takes Swift Action to Address Equity in Transplantation - Page 1 OverviewHealth Care Worker: Burnout Versus Moral Injury - Page 2 Please WelcomeOur Categorical Interns - Page 2 Education‘General Residency Survival Guide’ Offers Practical Advice - Page 2 Changing Lives Through ResearchJefferson Breast Surgeon Selected for Second Cohort of Robert A. Winn Career Development Award - Page 3 On the JobNew Faculty - Page 3 Giving OpportunityHonickman Center to Include Employee Wellness Space - Page 4 News in BriefNews in Brief - Page

    ENCOURAGING PREVENTIVE ACTION BY EMPLOYING EFFECTIVE RHETORIC IN PUBLIC COMMUNICATION OF THE ZIKA HAZARD AND ASSOCIATED RISKS

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    Threats from Zika and other emergent arboviruses (arthropod-borne viruses) often receive little scholarly attention across most disciplines thanks in no small part to the traditional view that most emergent disease discourse is only immediately relevant to those in medical and economic fields. The reality is that any time endemic threats pose risks to public welfare or become threats to national health and security, scholars from all fields should reevaluate how their current and developing skills and knowledge could be employed to help prevent and/or minimize negative outcomes when outbreaks seem likely. Scholars in the fields of rhetoric and technical communication have developed skills and knowledge that would render us particularly well suited to work with those in medical, economic, and public communication fields to develop or remediate tools and resources to alter potential outbreak outcomes in positive ways if we were offered or willing to claim a seat at their table. This study utilizes surveying of residents in Harlingen, Texas, regarding Zika as a springboard into research on public health communication failures as represented by technical documents designed to communicate health and safety information about Zika and validated by revision of those documents to increase their effectiveness in encouraging proactive prevention behaviors and retention of health knowledge

    Regulatory Reliance and Post-Marketing Surveillance Systems for Safe and Accelerated Introduction of New Medical Products in Low- and Middle-Income Countries

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    Though delayed access to medicines is still common, disease outbreaks in the past three decades has driven speedier introduction of innovative medical products. Yet, successful models for safe and accelerated introduction of new medical products in low- and middle-income countries are scarcely documented. Recent viral diseases outbreaks like Ebola, COVID-19, and Monkeypox has further highlighted the need for regulatory preparedness for health emergencies. Well-resourced countries have developed expedited regulatory pathways for such situations, while LMICs are not as prepared. They lack models for adopting best practices for implementing regulatory reliance and integrated post marketing surveillance (PMS). Experiences gained from our work strengthening regulatory systems for HIV/AIDS, Tb, and malaria may inform the development of best practices and models for accelerated introduction of future medical products. Chapter 1 of this thesis provides summary of research outputs which documents my published work on introduction of new medical products in global health. Chapter 2 is an integrative literature review of pharmaceutical access, regulatory reliance, and PMS, concluding that regulatory reliance and PMS are critical for safe and accelerated introduction of new medical products in LMICs. However, gaps and challenges exist, and they lead to delayed access which costs lives. To address those gaps, in Chapter 3 we developed Model Integrated Quality and Safety Review (IQSR) checklist, reliance-based review, and tools for integrated surveillance. Evolution in medicines regulation is typically predicated by access campaigns or mishaps. Stronger regulatory systems with well-established approaches for implementing reliance and post market surveillance have the capability to ensure safe and accelerated introduction of new medical products. To ensure that best practices are implemented, we recommended practical tools for the operationalization of reliance practices and post marketing surveillance systems. The tools identified will help regulators, industry, global health experts in advancing timely access to address unmet medical needs
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