Physician and patient perspectives on the management of hereditary angioedema: a survey on treatment burden and needs

2021 ◽  
Vol 42 (3) ◽  
pp. S17-S25 ◽  
Author(s):  
Marc A. Riedl ◽  
Timothy J. Craig ◽  
Aleena Banerji ◽  
Kavita Aggarwal ◽  
Jessica M. Best ◽  
...  
Keyword(s):  
United States ◽  
Hereditary Angioedema ◽  
Standard Of Care ◽  
The United States ◽  
The Body ◽  
Current Standard ◽  
Prescribing Trends ◽  
Individualized Approach ◽  
The Impact

Hereditary angioedema (HAE) is a rare disorder caused by genetic mutations that lead to recurrent episodes of swelling in various parts of the body. Prophylactic treatment is common for patients with HAE, and the therapeutic options have expanded in recent years. The current standard of care for prophylactic HAE therapies is subcutaneous treatment, which can be self-administered at home, greatly improving patient quality of life. As new therapies emerge, it is important for patients and physicians to discuss the risks and benefits associated with each treatment to develop an individualized approach to HAE management. We conducted surveys of patients with HAE and physicians who treat patients with HAE to identify prescribing trends for prophylactic HAE treatments and the impact that such treatments has on patients. Our results confirmed that newer, subcutaneous therapies are prescribed for HAE prophylaxis more frequently than other therapies in the United States and that treatment burdens still exist for patients with HAE. We found that physicians and patients were not always aligned on how treatment choices affect patients’ lives, which may mean that there are opportunities for enhanced patient‐physician dialog and shared decision-making in HAE management in the United States.

scholarly journals How do patients and physicians communicate about hereditary angioedema in the United States?

PLoS ONE ◽  
2021 ◽  
Vol 16 (12) ◽  
pp. e0260805
Author(s):  
Gagan Jain ◽  
Lauren Walter ◽  
Carolyn Reed ◽  
Patricia O’Donnell ◽  
Jeffrey Troy
Keyword(s):  
Quality Of Life ◽  
United States ◽  
Hereditary Angioedema ◽  
The United States ◽  
Telephone Interviews ◽  
Institutional Review ◽  
Communication Dynamics ◽  
The Impact

Background Hereditary angioedema (HAE) is a rare disease that manifests as recurrent and debilitating angioedema attacks, significantly impacting patients’ quality of life. Objective To assess communication dynamics between patients with HAE and treating physicians and the impact this has on the treatment of HAE in the United States. Methods This observational study used an institutional review board–approved protocol to collect four sources of patient–physician communication data from the period between January 2015 and May 2017: in-office conversations between patients aged ≥18 years with HAE and physicians, follow-up dictations with physicians, telephone interviews with patients and physicians, and publicly available social media posts from patients. Participant language was qualitatively assessed and key communication elements and communication gaps identified. Results Twenty-five in-office conversations, 14 follow-up physician dictations, and 17 telephone interviews were conducted with a total of 29 unique patients, 4 caregivers, and 14 physicians. In-office conversations were generally physician-driven and focused primarily on symptom frequency, location, and severity; lexicon from both parties centered on “episodes” and “swelling.” During visits, impact on quality of life was not routinely assessed by physicians nor discussed proactively by patients; however, during telephone interviews and online, patients frequently described the multifaceted burden of HAE. Patients highlighted the difficulties they experience by using repetition, emphasis, and metaphors; they also varied the descriptors used for attacks depending on the communication goal. Physicians used intensifiers to emphasize the necessity of rescue medication access, whereas prophylactic treatments were positioned as an option for frequent or laryngeal attacks. Conclusion Vocabulary differences suggest that the full impact of HAE is not consistently communicated by patients to physicians during clinical visits, indicating the potential for misaligned understanding of disease burden. A patient-driven, rather than physician-driven approach to the discussions may elicit valuable information that could help to optimize treatment approaches.

Mobilizing the Invisible: Power and Marginality in the Black LGBTQ Community

2020 ◽  
Author(s):  
Ravi K. Perry ◽  
Aaron D. Camp
Keyword(s):  
United States ◽  
Political Institutions ◽  
Public Discourse ◽  
White Supremacy ◽  
Body Politic ◽  
The United States ◽  
The Body ◽  
Coalition Building ◽  
Structural Inequities ◽  
The Impact

Symbolic and structural inequities that seek to maintain White supremacy have sought to render Black LGBTQ Americans invisible in the body politic of powerful institutions that govern society. In the face of centuries-long oppression at the hands of the state, Black LGBTQ Americans have effectively mobilized to establish visibility on the national policymaking agenda. Members of this community have demonstrated a fierce resilience while confronting a violent anti-Black and anti-LGBTQ mainstream agenda narrative in media and politics. This sociopolitical marginalization—from members of their shared demographic, or not, is often framed in partisan or ideological terms in public discourse and in the halls of American political institutions. Secondary marginalization theory and opinion polling frame how personal identity and social experience shape the Black LGBTQ political movement’s expression of what participation in politics in the United States ought to earn them in return. Double-consciousness theory contextualizes the development of Black LGBTQ sociopolitical marginalization in the United States and the community’s responsive mobilization over time—revealing the impact of coalition building and self-identification toward establishing political visibility necessary to improve the lived conditions of the multiply oppressed.

Quality of Child Care as an Aspect of Family and Child Care Policy in the United States

PEDIATRICS ◽  
1993 ◽  
Vol 91 (1) ◽  
pp. 182-188
Author(s):  
Sandra Scarr ◽  
Deborah Phillips ◽  
Kathleen McCartney ◽  
Martha Abbott-Shim
Keyword(s):  
United States ◽  
Child Care ◽  
Low Income ◽  
The United States ◽  
Child Care Policy ◽  
Care Policy ◽  
Working Families ◽  
Low Income Families ◽  
The Impact

The quality of child care services in the United States should be understood within a context of child care policy at the federal and state levels. Similarly, child care policy needs to be examined within the larger context of family-support policies that do or do not include parental leaves to care for infants (and other dependent family members) and family allowances that spread the financial burdens of parenthood. Maynard and McGinnis1 presented a comprehensive look at the current and predictable policies that, at federal and state levels, affect working families and their children. They note the many problems in our "patchwork" system of child care—problems of insufficient attention to quality and insufficient supply for low-income families. Recent legislation is a step toward improving the ability of low-income families to pay for child care (by subsidizing that part of the cost of such care which exceeds 15% rather than 20% of the family income) and some steps toward training caregivers and improving regulations. They note the seeming political impasse over parental leaves, even unpaid leaves, and the impact of this lack of policy on the unmet need for early infant care. We should step back from the current morass of family and child care policies in the United States and look at what other nations have done and continue to do for their working families. By comparison with other industrialized countries in the world, the United States neglects essential provisions that make it possible for parents in other countries to afford to rear children and to find and afford quality child care for their children.

The Impact of Universal Suffrage: A Comparison of Popular and Property Voting

1967 ◽  
Vol 61 (4) ◽  
pp. 1078-1087 ◽  
Author(s):  
Kenneth N. Vines ◽  
Henry Robert Glick
Keyword(s):  
United States ◽  
The United States ◽  
Democratic Institutions ◽  
Policy Decisions ◽  
Crucial Element ◽  
The Past ◽  
The Poor ◽  
Universal Suffrage ◽  
The Impact

The attainment of universal suffrage over various forms of voting restrictions has been one of the major accomplishments in the development of modern democratic institutions. Struggles for the vote have had to overcome restrictions based on factors such as sex, race and tenure of property. While gaps in the exercise of the franchise still remain, formal restrictions on voting in the United States have been largely removed.However, an important question, largely uninvestigated, concerns the “costs” of the universal franchise in terms of the quality of government and its impact upon policy decisions. Do the disadvantages of universal suffrage offset advantages said to be gained, particularly in Western nations, such as increased legitimization of decisions and stability of regimes? Many of the past and present opponents of the extension of voting have argued that the poor results to be expected from the impact of universal suffrage far outweigh the advantages. Clearly, the problem of “costs” is important, for it is a crucial element in the argument over democracy and the vote.

scholarly journals The Effect of Drug Pricing on Outpatient Payments and Treatment for Three Soil-Transmitted Helminth Infections in the United States, 2010–2017

2021 ◽  
Author(s):  
Heesoo Joo ◽  
Junsoo Lee ◽  
Brian A. Maskery ◽  
Chanhyun Park ◽  
Jonathan D. Alpern ◽  
...  
Keyword(s):  
Quality Of Care ◽  
Prescription Drug ◽  
Parasitic Infection ◽  
Standard Of Care ◽  
The United States ◽  
Parasitic Infections ◽  
Treatment Pathways ◽  
Drug Prices ◽  
The Impact

The price of certain antiparasitic drugs (e.g., albendazole and mebendazole) has dramatically increased since 2010. The effect of these rising prices on treatment costs and use of standard of care (SOC) drugs is unknown. To measure the impact of drug prices on overall outpatient cost and quality of care, we identified outpatient visits associated with ascariasis, hookworm, and trichuriasis infections from the 2010 to 2017 MarketScan Commercial Claims and Encounters and Multi-state Medicaid databases using Truven Health MarketScan Treatment Pathways. Evaluation was limited to members with continuous enrollment in non-capitated plans 30 days prior, and 90 days following, the first diagnosis. The utilization of SOC prescriptions was considered a marker for quality of care. The impact of drug price on the outpatient expenses was measured by comparing the changes in drug and nondrug outpatient payments per patient through Welch’s two sample t-tests. The total outpatient payments per patient (drug and nondrug), for the three parasitic infections, increased between 2010 and 2017. The increase was driven primarily by prescription drug payments, which increased 20.6–137.0 times, as compared with nondrug outpatient payments, which increased 0.3–2.2 times. As prices of mebendazole and albendazole increased, a shift to alternative SOC and non-SOC drug utilization was observed. Using parasitic infection treatment as a model, increases in prescription drug prices can act as the primary driver of increasing outpatient care costs. Simultaneously, there was a shift to alternative SOC, but also to non-SOC drug treatment, suggesting a decrease in quality of care.

scholarly journals Path to diagnosis and women’s perspectives on the impact of endometriosis pain

2020 ◽  
Vol 12 (1) ◽  
pp. 16-25 ◽  
Author(s):  
Georgine Lamvu ◽  
Oscar Antunez-Flores ◽  
Mona Orady ◽  
Beth Schneider
Keyword(s):  
Quality Of Life ◽  
United States ◽  
Social Life ◽  
Online Survey ◽  
The United States ◽  
Disease State ◽  
Management Options ◽  
Significant Impairment ◽  
The Impact

Introduction: Endometriosis is a burdensome chronic disease that can be difficult to diagnose, yet few studies examine experiences along the continuum of disease state. We sought to explore women’s journeys to an endometriosis diagnosis, experience with endometriosis pain, and interactions with healthcare practitioners. Methods: An anonymous 23-question online survey was distributed to women (aged >19 years) who self-identified as having a surgical or nonsurgical diagnosis of endometriosis and living in seven English-speaking countries through the social media network MyEndometriosisTeam.com . Results: From January through April 2018, 317 women in the United States and 134 women outside the United States completed the survey. More than 50% of the women waited 6 or more years for a diagnosis of endometriosis. Overall, 54.3% experienced endometriosis-related pain daily. Respondents (US/non-US) reported a significant impairment in quality of life that interfered with their family (45.7%/45.5%) and social life (40.1%/44.0%), education/career (42.9%/46.3%), and sexual function (68.1%/70.1%). Women reported their disease led to other conditions, including fatigue (93.6%), gastrointestinal issues (91.8%), and difficulty sleeping (87.4%). Many women were not satisfied with their practitioner’s ability to listen to concerns and felt that their practitioner’s treatment recommendations lacked consistency with their own goals/needs. Conclusion: Women still experience long delays and difficult journeys to an endometriosis diagnosis. Disease-associated pain is pervasive and has direct and indirect impacts on quality of life. Women are frequently not satisfied with disease-management options presented to them by their practitioners. These results suggest a need for improved medical education on disease state for both patients and practitioners.

scholarly journals CICERO AND THE US POLITICAL CULTURE OF THE 18TH–19TH CENTURIES

2018 ◽  
pp. 62-65
Author(s):  
A. Protsiuk
Keyword(s):  
United States ◽  
Political Culture ◽  
Private Property ◽  
The United States ◽  
The Body ◽  
American Democracy ◽  
Marcus Tullius Cicero ◽  
General Importance ◽  
The Us ◽  
The Impact

This article covers the role of Ancient Roman statesman and intellectual Marcus Tullius Cicero in the culture of the United States of America during the 18th and 19th centuries, particularly his influence on the formation of democracy in the US. While the recent decades have witnessed the increasing scholarly attention to the impact of Cicero on the early political culture of the US, the body of historical research, especially the Ukrainian one, lacks general analyses of Cicero’s role in the American political system during the emergence of the American state and its existence on the early stages of its history. After a general overview of the historical context of Cicero’s biography and legacy, this article pays a particular attention to his impact on the creation of United States democracy. A significant number of Cicero’s ideas, more or less, had been reflected in the concepts which defined the newly created American democracy. The most important concepts in this regard are the ideas of a republic government, private property, just laws, and forms of state structure. Apart from the general importance of Cicero’s ideas for the early American democracy, Marcus Tullius Cicero himself was a notable example for some Founding Fathers of the US, especially for the 2nd President John Adams. During the 19th century, Cicero continued to play a significant role in the American society, specially in the fields of education and public speaking.

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