Optimized care in Patients with Rare Diseases: TSC at the Center for Rare Diseases (ZSEUKS) at Saarland University Medical Center, Germany

2017 ◽  
Vol 229 (06) ◽  
pp. 311-315
Author(s):  
Daniel Ebrahimi-Fakhari ◽  
Martin Poryo ◽  
Norbert Graf ◽  
Michael Zemlin ◽  
Marina Flotats-Bastardas ◽  
...  
Keyword(s):  
Medical Care ◽  
Rare Diseases ◽  
Medical Center ◽  
Short Summary ◽  
Medical Issues ◽  
Center For Rare Diseases

AbstractProviding comprehensive medical care for patients with rare diseases is both challenging and rewarding. We will give a short summary of the most relevant medical issues pertinent to this subject, and will illustrate some of these issues by sharing our experience in the care of patients with TSC disease.

Clinical and epidemicological characteristics of acute rinosinusite by medical document recommended by multidisciplinary polyclinics

2018 ◽  
pp. 24-31
Author(s):  
Al Hariri Mahmoud Jomaa ◽  
S Semenenko ◽  
A Semenenko ◽  
Sergey Zaikov
Keyword(s):  
Statistical Analysis ◽  
Medical Care ◽  
Disease Duration ◽  
Inflammatory Diseases ◽  
Medical Center ◽  
Duration Of Treatment ◽  
Acute Rhinosinusitis ◽  
Diagnostic Center ◽  
Gender And Age ◽  
Clinical Variant

Introduction. Despite the world practice, the problem of inflammatory diseases of the paranasal sinuses is still relevant and has an important social meaning. Despite the fact that rhinosinusitis is one of the most common diseases, the reisvery little accurate data on its epidemiology. Therefore, our goal was to conduct a clinical epidemiological analysis with the establishment of the role of rhinosinusitis in the structure of requests for medical care in multidisciplinary polyclinics. Materials and methods. The data on the prevalence of various forms of sinusitis in the structure of ambulatory-polyclinic patients in the period 2011-2015 have been studied. In patients with acute rhinosinusitis, the following parameters were analyzed: gender and age of patients, duration, clinical variant of the disease, duration of treatment. Results. A clinical and statistical analysis of medical aid appeals at the level of the multidisciplinary outpatient clinic of the Vinnytsia City Clinical Hospital of ambulatory care and the Communal Medical Center "City Medical and Diagnostic Center" of Vinnytsia during 2011-2015. A statistical analysis based on the criterion approach included 896 patients with rinosunsitis. The following parameters have been analyzed: gender and age of patients, duration, clinical variant of the disease, duration of treatment. The conducted researches indicate that in the structure of appeals to the otolaryngologist rhinosinusitis is dominated by acute rhinosinusitis, the frequency of which remained relatively stable for five consecutive years: 133 cases - in 2011, 143 in 2012, 168 in 2013, 150 and 151 in 2014 and 2015, respectively. Among ambulatory polyclinic patients with different clinical variants of sinusitis prevailing persons of young working age. In general, patients with acute bacterial rhinosinusitis in the age group up to 60 years old make up 90.6%, which emphasizes the socioeconomic significance of this pathology. The frequency of treatment with rhinosinusitis is dominated by maxillary sinus lesions. The median duration of treatment was greatest in the case of hemi-sinusitis and polysynytes – 11.27±3.69 and 11.23±3.99 days, respectively, and the lowest in patients with frontal lobe was 9.48±3,76 days (p=0.032). A reduction in the mean duration of treatment for patients during the last three years of observation was observed (p<0.001). Conclusions: The study of the main clinical and epidemiological indicators of rhinosinusitis in the Ukrainian population can be the basis for the in for medplanning of medical care and social activities for this category of otolaryngological patients.

PRIMARY MEDICAL CARE AND MEDICAL RESEARCH TRAINING

PEDIATRICS ◽  
1973 ◽  
Vol 52 (6) ◽  
pp. 768-772
Author(s):  
David G. Nathan
Keyword(s):  
Child Health ◽  
Medical Research ◽  
Medical Care ◽  
Maternal And Child Health ◽  
Medical Literature ◽  
Research Training ◽  
Medical Center ◽  
Academic Programs ◽  
Primary Medical Care ◽  
And Child Health

Dr. Cicely Williams delivered a challenging Blackfan Lecture, reproduced elsewhere in this issue of the Journal,1 at the Children's Hospital Medical Center on May 30, 1973. It should be carefully studied by all pediatricians, and particularly by pediatricians involved in academic programs. Dr. Williams speaks with the experience and wisdom gathered during more than 50 years of service to the field of maternal and child health and with unimpeachable academic credentials. She first described kwashiorkor in the Western medical literature in 1931. Dr. Williams' message to academic pediatrics is loud and clear. It may be paraphrased in the following manner: "Be off," she states, "with your ultrascience, your superspecialists and your rapt attention to the few with so called interesting illnesses.

THE ROAD AHEAD TO BETTER MEDICAL CARE FOR CHILDREN

PEDIATRICS ◽  
1950 ◽  
Vol 6 (3) ◽  
pp. 553-556
Keyword(s):  
Child Health ◽  
Medical Care ◽  
Medical Center ◽  
Point Of View ◽  
Medical Services ◽  
High Quality ◽  
The Road ◽  
Provide Child Care ◽  
Ultimate Objective ◽  
The Many

THE road to better child health has been discussed in relation to the doctor and his training, health services and their distribution. We have dealt with the unavoidable question of costs. Particular attention has been given to some of the advantages and dangers of decentralization of pediatric education and services. Each of the various subjects has been discussed from the point of view of its bearing on the ultimate objective of better health for all children and the steps necessary to attain this goal. Now, we may stand back from the many details of the picture, view the whole objectively and note its most outstanding features. First is the fact that the improvement of child health depends primarily upon better training for all doctors who provide child care, general practitioners as well as specialists. This is the foundation without which the rest of the structure cannot stand. The second dominant fact is the need for extending to outlying and isolated areas the high quality medical care of the medical centers, without at the same time diluting the service or training at the center. The road to better medical care, therefore, begins at the medical center and extends outward through a network of integrated community hospitals and health centers, finally reaching the remote and heretofore isolated areas. Inherent in all medical schools is a unique potential for rendering medical services as well as actually training physicians. The very nature of medical education—whereby doctors in training work under the tutelage of able specialists in the clinic, hospital ward, and out-patient department—provides medical services of high quality to people in the neighboring communities.

scholarly journals Implemented Interventionsat the Naef K. Basile Cancer Institute to Protect Patients and Medical Personnel From COVID Infections: Effectiveness and Patient Satisfaction

2021 ◽  
Vol 11 ◽  
Author(s):  
Jean El Cheikh ◽  
Samantha El Warrak ◽  
Nohra Ghaoui ◽  
Farouk Al Chami ◽  
Maya Shahbaz ◽  
...  
Keyword(s):  
Patient Satisfaction ◽  
Medical Care ◽  
Medical Center ◽  
Treatment Protocol ◽  
Patient Centered ◽  
Oncology Patients ◽  
Oncology Patient ◽  
Safety Measures ◽  
Viral Spread ◽  
First Case

BackgroundThe Coronavirus Disease 2019 (COVID-19) was declared a pandemic by WHO in March 2020. The first case of COVID-19 was identified in Lebanon on the 21st of February 2020, amid a national economic crisis. As the numbers of cases increased, ICU admissions and mortality rose, which led hospitals across Lebanon to take certain safety measures to contain the virus. The Naef K. Basile Cancer Institute (NKBCI) at the American University of Beirut Medical Center handles oncology outpatient visits and outpatient treatment protocol infusions. The aim of this study is to evaluate the efficacy of the safety measures put forth by the NKBCI early in the pandemic.MethodsOncology patients are amongst the immunosuppressed population, who are at greatest risk of contracting COVID-19 and consequently suffering its complications. In this manuscript, we evaluated the precautionary measures implemented at the NKBCI of AUBMC from March 1st to May 31st of 2020, by surveying oncology patients on the telephone who had live and virtual appointments in both the oncology outpatient clinics and infusion unit. We conducted a prospective study of 670 oncology patients who had appointments at the NKBCI during this period and used their answers to draw responses about patient satisfaction towards those safety measures.ResultsOur results involved 387 responses of oncology patients who visited the NKBCI during the period of March 1st to May 31st of 2020. 99% of our respondents gave a rating of good to excellent with these new measures. The option of online consultation was given to 35% in the hematology group compared to 19% in those with solid tumors (p=0.001). From the total, 15% of patients opted for the telemedicine experience as a new implemented strategy to provide patient-centered medical care. Of this group of patients, 22% faced problems with connectivity and 19% faced problems with online payment.ConclusionNKBCI was competent in following the WHO guidelines in protecting the oncology patient population. Feedback collected from the surveys will be taken into account by the committee of the NKBCI to develop new safety measures that can better control viral spread while providing patient-centered medical care.

scholarly journals Potentials and current shortcomings in the cooperation between German centers for rare diseases and primary care physicians: results from the project TRANSLATE-NAMSE

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
D. Druschke ◽  
F. Krause ◽  
G. Müller ◽  
J. Scharfe ◽  
G. F. Hoffmann ◽  
...  
Keyword(s):  
Primary Care ◽  
Rare Disease ◽  
Rare Diseases ◽  
Primary Care Physicians ◽  
Postal Survey ◽  
National Plan ◽  
Major Step ◽  
Interface Management ◽  
Telephone Interviews ◽  
Center For Rare Diseases

Abstract Background The TRANSLATE-NAMSE project with the strengthening of the centers for rare diseases with their affiliation to the European Reference Networks was a major step towards the implementation of the German National Plan of Action for People with Rare Diseases establishing better care structures. As primary care physicians, general practitioners and pediatricians play a central role in the diagnosis of patients with rare disease, as it is usually them referring to specialists and rare disease centers. Therefore, the interface management between primary care physicians and the centers for rare diseases is of particular importance. Methods In a mixed-method-approach an anonymous postal survey of 1,500 randomly selected primary care physicians in Germany was conducted with focus on (1) knowledge about a center for rare diseases and how it works, (2) in case of cooperation, satisfaction with the services provided by centers, and (3) expectations and needs they have with regard to the centers. In addition, in-depth telephone interviews were conducted with physicians who had already referred patients to a center. Results In total, 248 physicians responded to the survey, and 15 primary care physicians were interviewed. We observed a wide lack of knowledge about the existence of (45.6% confirmed to know at least one center) about how to access rare disease centers (50.4% of those who know a center confirmed knowledge) and what the center specializes in. In case of cooperation the evaluation was mostly positive. Conclusion To improve medical care, the interplay between primary care physicians and rare disease centers needs to be strengthened. (1) To improve the communication, the objectives and functioning of the rare disease centers should become more visible. (2) Other projects dealing with the analysis and improvement of interface management between centers and primary care physicians, as described in the National Plan of Action for People with Rare Diseases, need to be implemented immediately. (3) If the project is evaluated positively, the structures of TRANSLATE-NAMSE should be introduced nationwide into the German health care system to ensure comprehensive, quality-assured care for people with rare diseases with special consideration of the key role of primary care physicians—also taking into account the financial expenditures of this new care model.

Millennials Seeking Healthcare: Examining the Degree to Which Patients Utilize Online Resources (Preprint)

2021 ◽  
Author(s):  
Landon Arensberg ◽  
Jessica Kalender-Rich ◽  
Jaehoon Lee ◽  
Cheryl Gibson
Keyword(s):  
Medical Care ◽  
Baby Boomers ◽  
Medical Center ◽  
Academic Medical Center ◽  
Age Groups ◽  
Online Reviews ◽  
Online Resources ◽  
Cross Sectional ◽  
Academic Medical ◽  
Us Census

BACKGROUND According to the 2020 US Census, a Silver Tsunami is looming with more than 75.4 million persons aged 57-75 (known as “Baby Boomers”) expected to need more costly medical care. Future estimates, however, indicate a much larger wave of individuals is imminent, given the 83.1 million Millennials approaching adulthood who will be seeking medical care. Because Millennials differ from Baby Boomers in several ways, it is important to understand how this population finds their physician to gain insight into what might influence this decision. OBJECTIVE To determine the extent and influence online resources and reviews have on the younger generation as compared to elder generations. METHODS Between the months of May and July 2020 a cross-sectional paper-based survey was conducted at primary care and geriatric clinics located within a large urban academic medical center in the Midwest. RESULTS A sample of 284 patients completed the survey (44.35 ± 17.54 yrs old [range=18-90], 60.6% female, 57.4% white). Of Millennials (respondents aged 22-38 yrs), 67.2% read online reviews before choosing a physician. Millennials were significantly more likely to read online reviews before choosing a physician (P=0.004) and utilize online resources to search for a new physician (P<.001) than older patients. The majority of millennials were likely to be influenced by both negative reviews (59%) and positive reviews (71.3%). Female patients were more likely to read online reviews and use online resources compared to men, but the differences were not significant. CONCLUSIONS Overall, Millennials are much more likely to research online reviews before choosing a physician. Other generations also use online resources to an extent but tend to use personal referrals. Across all age groups, negative online reviews were less influential in decision-making compared to positive ones. Therefore, a presence on review websites and search engines seems to only benefit one’s medical practice to capture the new wave of patients.

scholarly journals Interviews with experts in rare diseases for the development of clinical decision support system software - a qualitative study

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Jannik Schaaf ◽  
Hans-Ulrich Prokosch ◽  
Martin Boeker ◽  
Johanna Schaefer ◽  
Jessica Vasseur ◽  
...  
Keyword(s):  
Decision Support ◽  
Qualitative Study ◽  
Medical Informatics ◽  
Clinical Decision Support ◽  
Rare Diseases ◽  
Qualitative Content Analysis ◽  
Medical Center ◽  
Clinical Decision ◽  
Diagnostic Process ◽  
University Hospitals

Abstract Background Patients with rare diseases (RDs) are often diagnosed too late or not at all. Clinical decision support systems (CDSSs) could support the diagnosis in RDs. The MIRACUM (Medical Informatics in Research and Medicine) consortium, which is one of four funded consortia in the German Medical Informatics Initiative, will develop a CDSS for RDs based on distributed clinical data from ten university hospitals. This qualitative study aims to investigate (1) the relevant organizational conditions for the operation of a CDSS for RDs when diagnose patients (e.g. the diagnosis workflow), (2) which data is necessary for decision support, and (3) the appropriate user group for such a CDSS. Methods Interviews were carried out with RDs experts. Participants were recruited from staff physicians at the Rare Disease Centers (RDCs) at the MIRACUM locations, which offer diagnosis and treatment of RDs. An interview guide was developed with a category-guided deductive approach. The interviews were recorded on an audio device and then transcribed into written form. We continued data collection until all interviews were completed. Afterwards, data analysis was performed using Mayring’s qualitative content analysis approach. Results A total of seven experts were included in the study. The results show that medical center guides and physicians from RDC B-centers (with a focus on different RDs) are involved in the diagnostic process. Furthermore, interdisciplinary case discussions between physicians are conducted. The experts explained that RDs exist which cannot be fully differentiated, but rather described only by their overall symptoms or findings: diagnosis is dependent on the disease or disease group. At the end of the diagnostic process, most centers prepare a summary of the patient case. Furthermore, the experts considered both physicians and experts from the B-centers to be potential users of a CDSS. The experts also have different experiences with CDSS for RDs. Conclusions This qualitative study is a first step towards establishing the requirements for the development of a CDSS for RDs. Further research is necessary to create solutions by also including the experts on RDs.

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