scholarly journals Adaptation of a mobile health platform to the needs of cystic fibrosis patients, caregivers, and clinicians in the United States (Preprint)

2020 ◽  
Author(s):  
Sarah B. Rutland ◽  
Rikard Palmer Bergquist ◽  
Andreas Hager ◽  
Robin Geurs ◽  
Cathy Mims ◽  
...  
Keyword(s):  
United States ◽  
Cystic Fibrosis ◽  
Focus Groups ◽  
Mobile Health ◽  
Healthcare Providers ◽  
The United States ◽  
Standards Of Care ◽  
Healthcare Team ◽  
Daily Care ◽  
Clinic Visits

BACKGROUND Cystic fibrosis (CF) is an inherited chronic condition that requires extensive daily care and quarterly clinic visits with a multidisciplinary care team. The limited exchange of information outside of the quarterly clinic visits impedes optimal disease self-management, patient engagement, and shared decision-making. OBJECTIVE This study adapted a mobile health (mHealth) application originally developed in Sweden to the needs of people with CF, their caregivers, and healthcare providers in the United States, and tested it as a platform for sharing patient-generated health data (PGHD) with the CF healthcare team. METHODS Focus groups with CF healthcare providers, adolescents with CF, and caregivers of children and adolescents with CF were conducted to determine what modifications were necessary. Focus group data were analyzed using a thematic analysis, and emergent themes were ranked according to desirability and technical feasibility. The mHealth platform was then modified to meet the identified needs and preferences, and the flow of PGHD to a secure REDCap database was tested. Protocols for data management and clinical follow-up were also developed. RESULTS Five focus groups with 21 participants were conducted. Recommended modifications pertained to all functionalities of the mHealth platform, including tracking of symptoms, treatments, and activities of daily care; creating and organizing medication lists and setting up reminders; generating reports for the healthcare team; language and presentation; sharing and privacy; as well as settings and accounts. Overall, healthcare providers recommended changes to align the mHealth platform with U.S. standards of care, people with CF and their caregivers requested to track more disease symptoms and clinical outcomes, and both groups suggested the inclusion of a mental health tracker as well as more detailed response options and precise language. Beta-testers of the modified platform reported issues related to translatability to U.S. environment and various bugs. CONCLUSIONS This study demonstrated the importance of identifying the needs and preferences of target users and stakeholders before adopting existing mHealth solutions. All relevant perspectives, including those of clinicians, patients, and caregivers, should be thoroughly considered in order to meet both end-user needs and evidence-based practice recommendations. CLINICALTRIAL NCT03910881

Fiduciary Principles in Contemporary Common Law Systems

2019 ◽  
pp. 564-582
Author(s):  
Matthew Conaglen
Keyword(s):  
United States ◽  
Common Law ◽  
The United States ◽  
Good Faith ◽  
Fiduciary Duty ◽  
Standards Of Care ◽  
Duty Of Care ◽  
Fiduciary Duties ◽  
Similarities And Differences ◽  
Fiduciary Relationships

This chapter examines the principles of fiduciary doctrine that are found in contemporary common law systems. More specifically, it considers the current similarities and differences between various jurisdictions such as England, Australia, Canada, and the United States. The similarities focus on the duties of loyalty, care and skill, and good faith, as well as when fiduciary duties arise and the kinds of interests that are protected by recognition of fiduciary relationships. The chapter also discusses the issue of differences between various jurisdictions with regard to the duty of care and skill before concluding with an analysis of differences between remedies that are made available in the various contemporary common law jurisdictions when a breach of fiduciary duty arises. It shows that the regulation of fiduciaries appears to be reasonably consistent across common law jurisdictions and across various types of actors, even as such actors are expected to meet differing standards of care. Statute plays a key role in the regulation of various kinds of fiduciary actors, especially corporate directors.

scholarly journals Pre-Exposure Prophylaxis Training among Medical Schools in the United States

2021 ◽  
Vol 12 ◽  
pp. 215013272110287
Author(s):  
Robert L. Cooper ◽  
Mohammad Tabatabai ◽  
Paul D. Juarez ◽  
Aramandla Ramesh ◽  
Matthew C. Morris ◽  
...  
Keyword(s):  
United States ◽  
Hiv Prevention ◽  
Injection Drug Users ◽  
Drug Users ◽  
Healthcare Providers ◽  
Medical Schools ◽  
The United States ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Exposure Prophylaxis

Pre-Exposure Prophylaxis (PrEP) has been shown to be an effective method of HIV prevention for men who have sex with-men (MSM) and -transgender women (MSTGWs), serodiscordant couples, and injection drug users; however fewer than 50 000 individuals currently take this regimen. Knowledge of PrEP is low among healthcare providers and much of this lack of knowledge stems from the lack or exposure to PrEP in medical school. We conducted a cross sectional survey of medical schools in the United States to assess the degree to which PrEP for HIV prevention is taught. The survey consisted Likert scale questions assessing how well the students were prepared to perform each skill associated with PrEP delivery, as well as how PrEP education was delivered to students. We contacted 141 medical schools and 71 responded to the survey (50.4%). PrEP education was only reported to be offered at 38% of schools, and only 15.4% reported specific training for Lesbian, Gay, Bisexual, and Transgender (LGBT) patients. The most common delivery methods of PrEP content were didactic sessions with 11 schools reporting this method followed by problem-based learning, direct patient contact, workshops, and small group discussions. Students were more prepared to provide PrEP to MSM compared to other high-risk patients. Few medical schools are preparing their students to prescribe PrEP upon graduation. Further, there is a need to increase the number of direct patient contacts or simulations for students to be better prepared.

scholarly journals Evaluation of pharmacists’ awareness of illegal online pharmacies and perceived impact on safe access to medicines

2021 ◽  
Vol 5 ◽  
pp. 239920262110056
Author(s):  
John B Hertig ◽  
Shannon M James ◽  
Connor J Hummel ◽  
Matthew J Rubin
Keyword(s):  
United States ◽  
Healthcare Providers ◽  
Access To Medicines ◽  
The United States ◽  
Pharmacy Education ◽  
Electronic Survey ◽  
Medication Therapy ◽  
Online Pharmacies ◽  
Effective Medication ◽  
Selection Of

Background: An estimated 95% of all online pharmacies operate unlawfully. Illegal online pharmacies distribute substandard and falsified medical products that may result in patient harm and suboptimal treatment, leading to an overall mistrust of medications, healthcare providers, and health systems. As medication experts, pharmacists are trusted to guide patients in selection of safe and effective medication therapy. Objective: The objective of this study was to determine gaps in knowledge and recognition of the negative clinical and safety impacts associated with illegal Internet pharmacies by licensed pharmacists. Methods: A 37-question electronic survey was developed and distributed to pharmacists across the United States by email via a database from the American Pharmacists Association. Descriptive statistics was utilized to analyze data. Results: A total of 347 pharmacists from across the United States responded to at least one question in the survey. In all, 58% of pharmacists reported a lack of confidence in their ability to counsel patients on the identification of illegal pharmacy websites. Fewer than 60% of pharmacists were able to accurately identify the legitimacy of a webpage based on visual characteristics. In addition, 75% of pharmacists reported being unfamiliar with resources available to help consumers identify safe and legitimate online pharmacies. Conclusion: Integration of the topic into pharmacy education curricula, training on available resources, and additional research into the prevalence and impact of illegal pharmacy websites are necessary to ensure that pharmacists and other healthcare professionals are adequately prepared to protect their communities from the threat of illegal online pharmacies.

scholarly journals Long-Term Impact of Ivacaftor on Healthcare Resource Utilization Among People with Cystic Fibrosis in the United States

2021 ◽  
Author(s):  
Teja Thorat ◽  
Lisa J. McGarry ◽  
Krutika Jariwala-Parikh ◽  
Brendan Limone ◽  
Machaon Bonafede ◽  
...  
Keyword(s):  
United States ◽  
Cystic Fibrosis ◽  
Resource Utilization ◽  
Healthcare Resource ◽  
The United States ◽  
Healthcare Resource Utilization ◽  
Long Term Impact

scholarly journals Mycobacterium talmoniae, a Potential Pulmonary Pathogen Isolated from Multiple Patients with Bronchiectasis in the United States, Including the First Case of Clinical Disease in a Patient with Cystic Fibrosis

2018 ◽  
Vol 57 (2) ◽  
Author(s):  
Ravikiran Vasireddy ◽  
Sruthi Vasireddy ◽  
Barbara A. Brown-Elliott ◽  
Alexander L. Greninger ◽  
Rebecca M. Davidson ◽  
...  
Keyword(s):  
United States ◽  
Cystic Fibrosis ◽  
16S Rrna ◽  
Type Strain ◽  
Gene Sequencing ◽  
The United States ◽  
Average Nucleotide Identity ◽  
Content Type ◽  
First Case ◽  
Multiple Patients

ABSTRACTWe characterize three respiratory isolates of the recently described speciesMycobacterium talmoniaerecovered in Texas, Louisiana, and Massachusetts, including the first case of disease in a patient with underlying cystic fibrosis. The three isolates had a 100% match toM. talmoniaeNE-TNMC-100812Tby complete 16S rRNA,rpoBregion V, andhsp65 gene sequencing. Core genomic comparisons between one isolate and the type strain revealed an average nucleotide identity of 99.8%. The isolates were susceptible to clarithromycin, amikacin, and rifabutin, while resistance was observed for tetracyclines, ciprofloxacin, and linezolid.M. talmoniaeshould be added to the list of potential pulmonary pathogens, including in the setting of cystic fibrosis.

scholarly journals The Association of Mobile Health Applications with Self-Management Behaviors among Adults with Chronic Conditions in the United States

2021 ◽  
Vol 18 (19) ◽  
pp. 10351
Author(s):  
Hao Wang ◽  
Amy F. Ho ◽  
R. Constance Wiener ◽  
Usha Sambamoorthi
Keyword(s):  
United States ◽  
Chronic Conditions ◽  
Healthcare Providers ◽  
The United States ◽  
Personal Health Records ◽  
Self Management ◽  
Personal Health ◽  
Health Records ◽  
Mhealth Apps ◽  
Management Behaviors

Background: Mobile applications related to health and wellness (mHealth apps) are widely used to self-manage chronic conditions. However, research on whether mHealth apps facilitate self-management behaviors of individuals with chronic conditions is sparse. We aimed to evaluate the association of mHealth apps with different types of self-management behaviors among patients with chronic diseases in the United States. Methods: This is a cross-sectional observational study. We used data from adult participants (unweighted n = 2340) of the Health Information National Trends Survey in 2018 and 2019. We identified three self-management behaviors: (1) resource utilization using electronic personal health records; (2) treatment discussions with healthcare providers; and (3) making healthcare decisions. We analyzed the association of mHealth apps to self-management behaviors with multivariable logistic and ordinal regressions. Results: Overall, 59.8% of adults (unweighted number = 1327) used mHealth apps. Adults using mHealth apps were more likely to use personal health records (AOR = 3.11, 95% CI 2.26–4.28), contact healthcare providers using technology (AOR = 2.70, 95% CI 1.93–3.78), and make decisions on chronic disease management (AOR = 2.59, 95% CI 1.93–3.49). The mHealth apps were associated with higher levels of self-management involvement (AOR = 3.53, 95% CI 2.63–4.72). Conclusion: Among individuals with chronic conditions, having mHealth apps was associated with positive self-management behaviors.

scholarly journals Managing Uncertainty in Chronic Illness From Patient Perspectives

2020 ◽  
Vol 2 (1) ◽  
Author(s):  
Amanda Brown ◽  
Susan Hayden ◽  
Karen Klingman ◽  
Leslie C Hussey
Keyword(s):  
Chronic Illness ◽  
Phenomenological Study ◽  
Management Strategies ◽  
Healthcare Providers ◽  
The United States ◽  
Healthcare Team ◽  
Control And Prevention ◽  
Qualitative Phenomenological ◽  
Almost All ◽  
Qualitative Phenomenological Study

Chronic illness is an increasing concern in the United States as the Centers for Disease Control and Prevention reports that 50% of adults have at least one chronic illness. When individuals must adjust to chronic illness, they may experience uncertainty regarding the illness, prognosis, and symptoms. The purpose of this qualitative, phenomenological study was to explore the management strategies of uncertainty in chronic illness from patients’ perspectives. Merle Mishel’s uncertainty in illness theory was the framework used to explore the lives of individuals diagnosed and living with chronic illness. In-depth interviews were conducted with eight individuals who have chronic disease. Results revealed themes that individuals with chronic illness do experience uncertainty and that it impacts almost all aspects of their lives. Some of the themes identified were chronic illness, uncertainty, impact of uncertainty on daily living, coping or managing uncertainty, and communication from the healthcare team about uncertainty. The individuals expressed changes in daily activities and retraining their minds to accept their new normal. This study offers coping and management strategies that healthcare professionals can implement into treatment plans to improve the quality of life for individuals with uncertainty in chronic illness. The information produced from this study will aid healthcare providers in understanding the need to address the uncertainty at diagnoses and offer ways to assist patients in coping and managing uncertainty

Cross Cultural Perceptions on Privacy in the United States, Vietnam, Indonesia, and Taiwan

2009 ◽  
pp. 284-299 ◽  
Author(s):  
Andy Chiou
Keyword(s):  
United States ◽  
Focus Groups ◽  
The United States ◽  
Cross Cultural ◽  
Future Research ◽  
The Internet ◽  
Single System ◽  
Cultural Perceptions ◽  
Internet Privacy ◽  
Different Cultures

In this chapter, the authors will briefly discuss some cross cultural concerns regarding Internet privacy. The authors believe that due to the cross cultural nature of the Internet itself, different cultures will tend to result in different concerns regarding Internet privacy. As such, there is no single system of protecting Internet privacy that may be suitable for all cultures. The authors also utilize focus groups from various countries spanning Asia and the United States to discover the differences between cultures. Hopefully an understanding of such differences will aid in future research on Internet privacy to take a more culture sensitive approach.

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