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1.
Perm J ; : 1-12, 2024 Sep 06.
Artículo en Inglés | MEDLINE | ID: mdl-39238323

RESUMEN

INTRODUCTION: Understanding the lived experience of illness is important for empowering patients and informing health care practitioners. This study investigated the impact of a book-length comic memoir, My Degeneration: A Journey Through Parkinson's, by Peter Dunlap-Shohl, on patients' mental health, knowledge, and attitudes about living with Parkinson's disease (PD). The authors further explored which patients found the book to be beneficial and why. METHODS: In this convergent mixed methods study, patients with PD were recruited from a multidisciplinary movement disorders clinic in 2019-2020 and were eligible if cognitively intact; English-speaking; had stage I, II, or III PD; and < 12 months had elapsed since diagnosis. Participants received My Degeneration to read at home, measures were obtained pre- and postintervention, and participants were interviewed within approximately 1 month. RESULTS: Thirty participants completed the study (13 males and 17 female; mean age = 59 years). Four qualitative themes emerged: Reading My Degeneration 1) validated the experience of living with PD, 2) reinforced practical behaviors that support well-being, 3) provided insight about the illness experience, and 4) was emotionally and physically taxing. There were no statistically significant pre-/postintervention changes in knowledge, self-efficacy, hope, or emotional distress. Book "endorsers" appreciated Dunlap-Shohl's dark humor and resonated with his experience; "detractors" found the book to be blunt and sometimes frightening. DISCUSSION/CONCLUSION: Participants who liked the book-the "endorsers"-revealed that it deeply resonated with them and helped them realize they were not alone with the disease. Many commented that Dunlap-Shohl's story was in some ways their story-and that this was both practically and emotionally reassuring. My Degeneration has the potential to benefit patients who appreciate comics, enjoy dark humor, and are not overly pessimistic.

2.
Int J Mol Sci ; 25(13)2024 Jul 04.
Artículo en Inglés | MEDLINE | ID: mdl-39000452

RESUMEN

Childhood-onset Takayasu arteritis (TA) is a rare, heterogeneous disease with limited diagnostic markers. Our objective was to identify and classify all candidates for biomarkers of TA diagnosis in children reported in the literature. A systematic literature review (PRISMA) of MEDLINE, EMBASE, Wiley Cochrane Library, ClinicalTrias.gov, and WHO ICTRP for articles related to TA in the pediatric age group between January 2000 and August 2023 was performed. Data on demographics, clinical features, laboratory measurements, diagnostic imaging, and genetic analysis were extracted. We identified 2026 potential articles, of which 52 studies (81% case series) met inclusion criteria. A total of 1067 TA patients were included with a peak onset between 10 and 15 years. Childhood-onset TA predominantly presented with cardiovascular, constitutional, and neurological symptoms. Laboratory parameters exhibited a low sensitivity and specificity. Imaging predominantly revealed involvement of the abdominal aorta and renal arteries, with magnetic resonance angiography (MRA) being the preferred imaging modality. Our review confirms the heterogeneous presentation of childhood-onset TA, posing significant challenges to recognition and timely diagnosis. Collaborative, multinational efforts are essential to better understand the natural course of childhood-onset TA and to identify accurate biomarkers to enhance diagnosis and disease management, ultimately improving patient outcomes.


Asunto(s)
Biomarcadores , Arteritis de Takayasu , Arteritis de Takayasu/diagnóstico , Arteritis de Takayasu/diagnóstico por imagen , Arteritis de Takayasu/sangre , Humanos , Niño , Adolescente , Angiografía por Resonancia Magnética/métodos , Femenino , Masculino
3.
Pediatr Cardiol ; 45(3): 483-490, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-38214737

RESUMEN

Congenital heart disease (CHD) is one of the most common congenital birth defects. As surgical and interventional techniques have improved, the mortality has been greatly reduced and the focus has shifted to quality of life and long-term outcomes. The impact of CHD on development and cognition is becoming increasingly recognized. However, more research is needed to understand how children with CHD perform across various cognitive and intellectual domains. This study explored the performance of children with CHD on the newest version of the Wechsler Intelligence Scale for Children compared to normative controls. Children with CHD performed more poorly than normal controls across all indices and most subtests with large effect sizes. Additionally, we explored the patterns of impairment across indices and subtests, as well as the relationships between heard disease variables and WISC-V performance. Block design, Digit Span, and Similarities were the most commonly impaired scores in children with CHD, while Symbol Search, Picture Span, Figure Weights, and Vocabulary were least likely to be impaired.


Asunto(s)
Cardiopatías Congénitas , Calidad de Vida , Niño , Humanos , Escalas de Wechsler , Cardiopatías Congénitas/cirugía
5.
6.
Ann Intern Med ; 175(4): 616, 2022 04.
Artículo en Inglés | MEDLINE | ID: mdl-35436435
7.
JAMA ; 327(7): 688, 2022 02 15.
Artículo en Inglés | MEDLINE | ID: mdl-35166798
9.
Geobiology ; 20(1): 137-155, 2022 01.
Artículo en Inglés | MEDLINE | ID: mdl-34590770

RESUMEN

In silica-rich hot spring environments, internally laminated, digitate sinter deposits are often interpreted as bio-mediated structures. The organic components of microbial communities (cell surfaces, sheaths and extracellular polymeric substances) can act as templates for silica precipitation, therefore influencing digitate sinter morphogenesis. In addition to biologic surface-templating effects, various microenvironmental factors (hydrodynamics, local pH and fluctuating wind patterns) can also influence silica precipitation, and therefore the morphology of resulting digitate sinters. Digitate sinter morphology thus depends on the dynamic interplay between microenvironmentally driven silica precipitation and microbial growth, but the relative contributions of both factors are a topic of continuing research. Here we present a detailed study of digitate silica sinters in distal, low-temperature regimes of the El Tatio geothermal field, Chile. This high-altitude geothermal field is extremely arid and windy, and has one of the highest silica precipitation rates found in the world. We find that digitate silica sinters at El Tatio always accrete into the prevailing eastward wind direction and exhibit laminar growth patterns coinciding with day-night cycles of wind- and thermally driven evaporation and rewetting. Subaerial parts of digitate sinters lack preserved organics and sinter textures that would indicate past microbial colonization, while filamentous cyanobacteria with resistant, silicified sheaths only inhabit subaqueous cavities that crosscut the primary laminations. We conclude that, although fragile biofilms of extremophile micro-organisms may have initially been present and templated silica precipitation at the tips of these digitate sinters, the saltation of sand grains and precipitation of silica by recurrent wind- and thermally driven environmental forcing at El Tatio are important, if not dominant factors shaping the morphology of these digitate structures. Our study sheds light on the relative contributions of biogenic and abiogenic factors in sinter formation in geothermal systems, with geobiological implications for the cautious interpretation of stromatolite-like features in ancient silica deposits on Earth and Mars.


Asunto(s)
Cianobacterias , Manantiales de Aguas Termales , Chile , Manantiales de Aguas Termales/microbiología , Morfogénesis , Dióxido de Silicio/química
10.
Geobiology ; 20(2): 310-330, 2022 03.
Artículo en Inglés | MEDLINE | ID: mdl-34676677

RESUMEN

Microbial mats floating within multiple hydrothermally sourced streams in El Tatio, Chile, frequently exhibit brittle siliceous crusts (~1 mm thick) above the air-water interface. The partially silicified mats contain a diverse assemblage of microbial clades and metabolisms, including cyanobacteria performing oxygenic photosynthesis. Surficial crusts are composed of several amorphous silica layers containing well-preserved filaments (most likely cyanobacteria) and other cellular textures overlying EPS-rich unsilicified mats. Environmental logs, silica crust distribution, and microbial preservation patterns provide evidence for crust formation via repeated cycles of evaporation and silica precipitation. Within the mats, in situ microelectrode profiling reveals that daytime oxygen concentrations and pH values are diminished beneath silica crusts compared with adjacent unencrusted communities, indicating localized inhibition of oxygenic photosynthesis due to light attenuation. As a result, aqueous conditions under encrusted mats have a higher saturation state with regard to amorphous silica compared with adjacent, more active mats where high pH increases silica solubility, likely forming a modest feedback loop between diminished photosynthesis and crust precipitation. However, no fully lithified sinters are associated with floating encrusted mats in El Tatio streams, as both subaqueous and subaerial silica precipitation are limited by undersaturated, low-SiO2 (<150 ppm) stream waters. By contrast, well-cemented sinters can form by evaporation in silica-undersaturated solutions above 200 ppm SiO2 . Floating mats in El Tatio therefore represent a specific sinter preservation window, where evaporation in silica-undersaturated microbial mats produces crusts, which preserve cells and affect mat chemistry, but low-silica concentrations prevent the formation of lasting sinter deposits. Patterns of silica precipitation in El Tatio microbial communities show that the preservation potential of silicifying mats in the rock record is strongly dependent on aqueous silica concentrations.


Asunto(s)
Cianobacterias , Dióxido de Silicio , Chile , Oxígeno , Ríos
12.
Astrobiology ; 20(4): 500-524, 2020 04.
Artículo en Inglés | MEDLINE | ID: mdl-31663774

RESUMEN

Palisade fabric is a ubiquitous texture of silica sinter found in low temperature (<40°C) regimes of hot spring environments, and it is formed when populations of filamentous microorganisms act as templates for silica polymerization. Although it is known that postdepositional processes such as biological degradation and dewatering can strongly affect preservation of these fabrics, the impact of extreme aridity has so far not been studied in detail. Here, we report a detailed analysis of recently silicified palisade fabrics from a geyser in El Tatio, Chile, tracing the progressive degradation of microorganisms within the silica matrix. This is complemented by heating experiments of natural sinter samples to assess the role of diagenesis. Sheathed cyanobacteria, identified as Leptolyngbya sp., were found to be incorporated into silica sinter by irregular cycles of wetting, evaporation, and mineral precipitation. Transmission electron microscopy analyses revealed that nanometer-sized silica particles are filling the pore space within individual cyanobacterial sheaths, giving rise to their structural rigidity to sustain a palisade fabric framework. Diagenesis experiments further show that the sheaths of the filaments are preferentially preserved relative to the trichomes, and that the amount of water present within the sinter is an important factor for overall preservation during burial. This study confirms that palisade fabrics are efficiently generated in a highly evaporative geothermal field, and that these biosignatures can be most effectively preserved under dry diagenetic conditions.


Asunto(s)
Cianobacterias/ultraestructura , Sedimentos Geológicos/química , Manantiales de Aguas Termales , Dióxido de Silicio/análisis , Carbono/análisis , Chile , Sedimentos Geológicos/microbiología , Microscopía Confocal , Microscopía Electrónica de Rastreo , Microscopía Electrónica de Transmisión , Nitrógeno/análisis , ARN Ribosómico 16S/análisis , Análisis de Secuencia de ADN , Agua
13.
Ann Intern Med ; 172(1): W29-W35, 2020 01 07.
Artículo en Inglés | MEDLINE | ID: mdl-31869835
14.
Perm J ; 242019.
Artículo en Inglés | MEDLINE | ID: mdl-31710837

RESUMEN

CONTEXT: Parkinson disease (PD) can be physically, emotionally, and financially burdensome. Understanding its impact from the patient's perspective is an important way to sensitize clinicians to the challenges of living with PD. OBJECTIVE: To evaluate whether a book-length graphic memoir (an illness story in comic form) can help clinicians appreciate PD from the patient's perspective. DESIGN: A convergent mixed-methods study of clinicians working in a multidisciplinary movement disorders clinic. Participants read My Degeneration and completed preintervention and post-intervention questionnaires. They also attended a book group discussion. Quantitative findings were compared before and after the intervention, and qualitative data were analyzed for themes. MAIN OUTCOME MEASURES: Clinicians': 1) confidence in understanding patients' experiences with PD, 2) knowledge about PD, and 3) empathy toward patients and families. RESULTS: After reading the book, participants' confidence in understanding patients' experiences with PD increased significantly in the areas of stigma and disease impact on patients and families. Clinical knowledge was unchanged. Qualitative analysis revealed 3 main themes: 1) the book provides a meaningful way for clinicians to learn about the experience of living with PD; 2) the medium of comics engages clinicians in ways different from other mediums; and 3) benefits of the book may extend beyond the clinical team. CONCLUSION: Clinicians who read My Degeneration gained insight into the psychosocial effects of PD on patients and their loved ones. The book helped facilitate deeper understanding of patients' experiences living with PD and fostered greater empathy and self-reflection.


Asunto(s)
Libros , Empatía , Conocimientos, Actitudes y Práctica en Salud , Enfermedad de Parkinson/psicología , Adulto , Actitud del Personal de Salud , Competencia Clínica , Femenino , Humanos , Masculino , Persona de Mediana Edad , Autoeficacia , Centros de Atención Terciaria
16.
MedEdPublish (2016) ; 8: 199, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-38089354

RESUMEN

This article was migrated. The article was marked as recommended. In 2018, anonymous online provocative comments were submitted to student leaders of a Syrian Refugee Initiative (SRI) at the Penn State College of Medicine. This triggered a series of actions with students and medical school leaders aimed at identifying the person who submitted the comments, trying to understand mutual perspectives, and managing the impact of the event on the student body. We describe the history of our college's commitment to humanism and how the SRI was a direct outgrowth of that culture. Voices of the student leaders who were directly impacted by the provocative comments and educational leaders who worked to resolve the crisis are presented. We also describe a collaborative process that involved engaging cybersecurity experts to identify the perpetrator, and share how the students and educational leaders were able to develop trust despite initial skepticism by students over the leadership's avowed commitment to taking the hate speech seriously. While the perpetrator was never identified and opportunities for improvement were identified along the way, by including student leaders in the process, students and administrators were able to develop trust and reach reasonable closure on this disturbing event. Take home messages are presented to guide other institutions in navigating instances of provocative comments or speech.

17.
18.
AMA J Ethics ; 20(1): 158-166, 2018 Feb 01.
Artículo en Inglés | MEDLINE | ID: mdl-29460769

RESUMEN

Graphic medicine is a swiftly growing movement that explores, theoretically and practically, the use of comics in medical education and patient care. At the heart of graphic medicine are graphic pathographies, stories of illness conveyed in comic form. These stories are helpful tools for health care professionals who seek new insight into the personal, lived experience of illness and for patients who want to learn more about their disease from others who have actually experienced it. Featuring excerpts from five graphic pathographies, this essay illustrates how the medium can be used to educate patients and enhance empathy in health care professionals, particularly with regard to informed consent and end-of-life issues.


Asunto(s)
Recursos Audiovisuales , Empatía , Personal de Salud/educación , Ilustración Médica , Narración , Educación del Paciente como Asunto , Relaciones Médico-Paciente , Personal de Salud/ética , Personal de Salud/psicología , Humanos , Consentimiento Informado , Relaciones Médico-Paciente/ética , Cuidado Terminal
19.
Med Sci Sports Exerc ; 50(6): 1249-1257, 2018 06.
Artículo en Inglés | MEDLINE | ID: mdl-29381651

RESUMEN

Poor suppression of lipolysis and blunted increase in blood flow after meal ingestion in obese adults may indicate resistance to the antilipolytic action of insulin. Exercise may be used to normalize lipolytic responses to food intake by increasing insulin sensitivity. PURPOSE: To determine if acute bouts of aerobic exercise and/or excise training alter lipolytic and blood flow responses to food intake in lean (LN) and obese (OB) children. METHODS: Sixty-five children (9-11 yr) were randomized into acute exercise (EX: 16 LN and 28 OB) or control (CON: 9 LN and 12 OB) groups that exercised (EX), or rested (CON) between standardized breakfast and lunch. Microdialysis probes were inserted into the subcutaneous abdominal adipose tissue to monitor interstitial glycerol (lipolysis) and blood flow. Changes in interstitial glycerol and nutritive flow were calculated from dialysate samples before and after each meal. A subgroup (OB = 15 and LN = 9) from the acute exercise group underwent 16 wk of aerobic exercise training. RESULTS: Poor suppression of lipolysis and a blunted increase in adipose tissue nutritive blood flow in response to breakfast was associated with BMI percentile (r = 0.3, P < 0.05). These responses were normalized at lunch in the OB in the EX (P < 0.05), but not in OB in the CON. Sixteen weeks of exercise training did not improve meal-induced blood flow and marginally altered the antilipolytic response to the two meals (P = 0.06). CONCLUSIONS: Daily bouts of acute aerobic exercise should be used to improve the antilipolytic and nutritive blood flow response to a subsequent meal in obese children.


Asunto(s)
Tejido Adiposo/metabolismo , Ejercicio Físico/fisiología , Lipólisis , Tejido Adiposo/irrigación sanguínea , Niño , Femenino , Glicerol/análisis , Humanos , Masculino , Comidas , Microdiálisis , Obesidad Infantil/fisiopatología , Periodo Posprandial , Flujo Sanguíneo Regional
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