Rarely mentioned: how we arrived at the quantitative definition of a rare disease.

Patients' difficulty obtaining medications for rare diseases and the advocacy of mothers led to a compelling and convoluted story of the development of the Orphan Drug Act (ODA) of 1983. While valid criticisms of the ODA remain, articles continue to be published on its ongoing beneficent influence. As hoped, ODA tax incentives stimulated research to develop pharmaceutical interventions for rare diseases. The initial ODA defined rare diseases qualitatively, but the 1984 Amendments established that <200,000 American citizens afflicted with a specific disease would be the numerical starting point. Considerable sleuthing was required to determine not only the source of this iconic number, but the reason this number was proposed. A coalition of Food and Drug Administration representatives, pharmaceutical executives, academic researchers, and members of rare disease advocacy organizations met in Washington, DC, and helped formulate the nuts and bolts of the ODA. As it turns out, two women at the conference brokered a deal in the restroom during a break and finalized this number. Paradoxically, rare diseases are not rare. Collectively, about 5000 to 7000 rare diseases are recognized and affect over 300,000 million people worldwide. Physicians should recognize that the collaboration of patient advocacy groups is an increasingly socially and politically effective force, bringing cohesion and recognition to associations such as the National Organization for Rare Disorders.

Non-hospitalized Adults with COVID-19 Differ Noticeably from Hospitalized Adults in Their Demographic, Clinical, and Social Characteristics.

The characteristics of patients with coronavirus disease 2019 (COVID-19) have primarily been described in hospitalized adults. Characterization of COVID-19 in ambulatory care is needed for a better understanding of its evolving epidemiology. Our aim is to provide a description of the demographics, comorbidities, clinical presentation, and social factors in confirmed SARS-CoV-2-positive non-hospitalized adults. We conducted a retrospective medical record review of 208 confirmed SARS-CoV-2-positive patients treated in a COVID-19 virtual outpatient management clinic established in an academic health system in Georgia. The mean age was 47.8 (range 21-88) and 69.2% were female. By race/ethnicity, 49.5% were non-Hispanic African American, 25.5% other/unknown, 22.6% non-Hispanic white, and 2.4% Hispanic. Nearly 70% had at least one preexisting medical condition. The most common presenting symptoms were cough (75.5%), loss of smell or taste (63%), headache (62%), and body aches (54.3%). Physician or advanced practice provider assessed symptom severity ranged from 51.9% mild, 30.3% moderate, and 1.4% severe. Only eight reported limitations to home care (3.8%), 55.3% had a caregiver available, and 93.3% reported initiating self-isolation. Care needs were met for 83.2%. Our results suggest the demographic and clinical characteristics of COVID-19 illness in non-hospitalized adults differ considerably from hospitalized patients and warrant greater awareness of risk among younger and healthier individuals and consideration of testing and recommending self-isolation for a wider spectrum of clinical symptoms by clinicians. Social factors may also influence the efficacy of preventive strategies and allocation of resources toward the SARS-CoV-2 pandemic.

Collaborative patient- and family-centered care for hospitalized individuals: Best practices for hospitalist care teams.

Traditionally, hospital medicine services have been dominated by the physician and hospital team, with significant barriers to patient- and family-centered care. This article offers principles and associated strategies to reduce those barriers and guide implementation of systemically informed, collaborative, and culturally responsive patient- and family-centered care provided by hospitalist care teams, especially regarding collaborative decision-making for treatment and discharge planning. Such an approach is associated with reduced lengths of stay and hospital costs and lowered rates of medical errors and mortality. It also is linked to improved patient and family cooperation and adherence; enhanced quality of care and clinical outcomes; and increased levels of satisfaction among health care professionals, patients, and families. Such care uses resources wisely and is effective and ethical. We hope articulating and illustrating these principles and strategies will facilitate efforts to shift the health care culture from being physician-centered to truly team-, patient-, and family-centered. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Peace, love, music, health care, and irony at the 1969 Woodstock Music Festival.

Myron Gittell's 2009 book, Woodstock '69: Three Days of Peace, Music, and Medical Care, is a compelling treatise referencing health care at Woodstock. Gittell's work partially informs this article about the iconic 1969 Woodstock Music Festival. About 400,000 people attended the concert, though organizers had initially planned for only 50,000. Helicopter surveillance preceding the festival revealed that thousands of spectators had already arrived. Directors realized they had the potential for one of the "greatest human tragedies in modern times" and marshaled local authorities, health care providers, local townspeople, the US Army, and an eccentric outfit from New Mexico known as the Hog Farmers, whose extraordinary efforts averted public health disaster. Drug overdoses presented problems but humane management by the Hog Farmers was exquisitely successful. Two deaths occurred and 3000 first aid visits were recorded. One captivating aspect of Woodstock was a film interview with the gentleman who cleaned the portable toilets. This 3-minute dialogue portrayed, unexpectedly and in unusual fashion, Woodstock's sociological complexities. The release, in 2018, of yet another high-profile film depicting Woodstock, and the bountiful journalistic efforts that ensued in the summer of 2019 reminiscing upon Woodstock's 50th anniversary, remind us of society's abiding fascination with this event.

The Oslerian legacy in the Southern states.

In the pages of The Southern Medical Journal, in 1919, William Osler's colleague Lewellys Barker published a piece entitled "Osler and the South." Using glowing terms but with startling inaccuracy, Barker described Osler's relationship with the South and Southerners. Essentially, the brief communication was a happy birthday letter. If Osler had any thoughts on the Civil War, Reconstruction, or the Southern agrarian mindset, he never wrote them down, and a paucity of published information is available to support Barker's comments. Even though William Osler lived in Baltimore when he worked at Johns Hopkins, he was never particularly fond of that city. He rarely traveled further south. When Osler departed Baltimore for the Regius Professorship in England in 1905, H. L. Mencken eventually published an exquisitely written and fond remembrance of Osler. On several occasions when Osler did venture south, he left a momentous literary or academic footprint. He gave his famous address, "The Fevers of the South," at the American Medical Association meeting in Atlanta in 1896. From this oratory comes the iconic and oft-quoted line: "Humanity has but three great enemies: fever, famine, and war; of these by far the greatest, by far the most terrible, is fever." On another excursion, he and two colleagues traveled to the Dismal Swamp, in Old Comfort Point, Virginia. Osler's fascination with Thomas Moore's poem "The Lake of the Dismal Swamp" inspired the outing. During their lunch break, Osler composed a whimsical tale, intended for his son Revere, about the swamp. Osler wrote the story on blank pages in the back of a copy of The Anatomy of Melancholy. That particular volume came to rest in a library in Christ Church and, when discovered, the "added contents" were quite a philological mystery until a letter, written by T. B. Futcher, describing the visit to the swamp, illuminated the activities of that outing. Despite Osler's limited travels in the South, he left an Oslerian legacy there.

The prevalence and impact of psychiatric symptoms in an undiagnosed diseases clinical program.

In 2008, the NIH launched an undiagnosed diseases program to investigate difficult to diagnose, and typically, multi-system diseases. The objective of this study was to evaluate the presence of psychiatric symptoms or psychiatric diagnoses in a cohort of patients seeking care at the Emory Special Diagnostic Service clinic. We hypothesized that psychiatric symptoms would be prevalent and associated with trauma exposure, and a decreased quality of life and functioning. This is a cross-sectional, retrospective analysis of 247 patients seen between February 7, 2014 and May 31, 2017. The sources for data included the Emory Health History Questionnaire (HHQ) that had the work and social adjustment and quality of life enjoyment and satisfaction questionnaire-short form (QLSQ) embedded in it; medical records, and the comprehensive standardized special diagnostic clinic forms. Primary outcomes were presence of any psychiatric symptom, based on report of the symptom on the HHQ or medical record, or presence of a confirmed preexisting psychiatric disorder. Seventy-two percent of patients had at least one psychiatric symptom while 24.3% of patients had a pre-existing psychiatric diagnosis. Patients with any psychiatric symptom had significantly diminished Q-LES-Q scores (45.27 ± 18.63) versus patients with no psychiatric symptoms (62.01 ± 21.57, t = 5.60, df = 225, p<0.0001) and they had significantly greater functional disability. Patients with a psychiatric disorder also had significantly diminished Q-LES-Q scores (45.16 ± 17.28) versus those without a psychiatric diagnosis (51.85 ± 21.54, t = 2.11, df = 225, p = 0.036) but did not have significantly increased functional impairment. Both patients with psychiatric symptoms and ones with psychiatric disorders had an increased prevalence of trauma. Psychiatric symptoms are prevalent in patients evaluated for undiagnosed disorders. The presence of any psychiatric symptom, with or without a formal psychiatric diagnosis, significantly decreases quality of life and functioning. This suggests that assessment for psychiatric symptoms should be part of the evaluation of individuals with undiagnosed disorders and may have important diagnostic and treatment implications.

Vulnus sclopetarium (gunshot wound).

Fading from the vernacular, the Latin phrase vulnus sclopetarium is a quaint, mystifying, and fascinating term that is translated as gunshot wound. There is a fulminating paucity of published information regarding the meaning of this term and the etymology. Trauma surgeons, military surgeons, and scholars of the medical aspects of the civil war may be familiar with the term. Vulnus is easily deciphered from ancient Latin as wound, whereas the origin of sclopetarium proves more difficult to discern. No guns were present in ancient Rome because guns were not invented until around the 13th century; hence, no Latin word for them existed. Thus, sclopetarium is classified as neo-Latin, and deconstruction of the word reveals that sclopeta means gun, but that destination was arrived at via a convoluted path. The suffix -arium implies a place. Remarriage of the two parts suggests that the gun is an instrument of injury, which is typically incurred on a battlefield. An alternative explanation may be that -arium may also refer to the anatomical location of the wound.

A tale of Congress, continuing medical education, and the history of medicine.

Well-intentioned attempts by the Senate Finance Committee to improve the content and quality of continuing medical education (CME) offerings had the unanticipated consequence of decimating academically oriented history of medicine conferences. New guidelines intended to keep CME courses free of commercial bias from the pharmaceutical industry were worded in a fashion that caused CME officials at academic institutions to be reluctant to offer CME credit for history of medicine gatherings. At the 2013 annual conference of the American Association for the History of Medicine, we offered a novel solution for determining CME credit in line with current guidelines. We asked attendees to provide narrative critiques for each presentation for which they desired CME credit. In this essay, we evaluate the efficacy of this approach.

Mentoring: A tale of two poems, filling graveyards, and learning the art of medicine.

Polar approaches to mentoring are reflected in this pair of poems, which on first inspection appear to be unrelated. Mentoring comes in different forms, and combining medicine, mentoring, and poetry in one essay is an opportunity to explore the vital role mentoring plays in medical education. A nod toward the humanistic side of medicine is also illuminated by the selected poetry and associated discussion.

The Osler Societies: a qualitative and quantitative portrait.

Over 700 presentations have been given at the meetings of the American Osler Society (AOS) since its inception in 1970. Fully half of these have treated various aspects of Osler's personal and professional life. Many have dealt with Osler's specific contributions to an array of medical specialties. Other national/international Osler Societies including the Osler Club of London and the Japan Osler Society have treated similar topics but in different proportions historically. As the societies have matured, the foci of their talks have broadened from Osler and more bio-medical historical topics to include more of the contemporary ethical, ideological and socioeconomic issues facing the medical profession. Osler himself tended to speak more frequently on such topics in his later life. For Oslerians, Osler has had such a profound influence upon the history of medicine that, at least for them, to study Osler is to study the history of medicine. A description of the culture of the AOS meetings is ventured.

Prevalence of and risk factors for colonization with methicillin-resistant Staphylococcus aureus in an outpatient clinic population.

OBJECTIVES: To determine the prevalence of methicillin-resistant Staphylococcus aureus (MRSA) colonization in an outpatient population and to identify risk factors for MRSA colonization. DESIGN: Surveillance cultures were performed during outpatient visits to identify S. aureus colonization. A case-control study was performed to identify risk factors for MRSA colonization. SETTING: Primary care internal medicine clinic. PATIENTS: Adults presenting for non-acute primary care (N = 494). RESULTS: S. aureus was isolated from 122 (24.7%) of the patients for whom cultures were performed. Methicillin-susceptible S. aureus was isolated from 107 (21.7%) of the patients, whereas MRSA was isolated from 15 (3.0%) of the patients. All MRSA isolates were resistant to multiple non-beta-lactam antimicrobial agents. In multivariate analyses, MRSA colonization was independently associated with admission to a nursing home (adjusted odds ratio [OR], 103; 95% confidence interval [CI95], 7 to 999) or hospital in the previous year, although the association with hospital admission was observed only among those without chronic illness (adjusted OR, 7.1; CI95, 1.3 to 38.1). In addition, MRSA colonization was associated with the presence of at least one underlying chronic illness, although this association was observed only among those who had not been hospitalized in the previous year (adjusted OR, 5.1; CI95, 1.2 to 21.9). CONCLUSIONS: We found a low prevalence of MRSA colonization in an adult outpatient population. MRSA carriers most likely acquired the organism through contact with healthcare facilities rather than in the community. These data show that care must be taken when attributing MRSA colonization to the community if detected in outpatients or during the first 24 to 48 hours of hospitalization.