scholarly journals A retrospective cohort study on European Reference Network for Rare Vascular Diseases 5 outcome measures for Hereditary Haemorrhagic Telangiectasia in Denmark

2022 ◽  
Vol 17 (1) ◽  
Author(s):  
Troels Hvelplund ◽  
Bibi Lange ◽  
Susanne Djernes Bird ◽  
Malene Korsholm ◽  
Anette Drøhse Kjeldsen
Keyword(s):  
Iron Deficiency ◽  
Outcome Measures ◽  
Health Care Providers ◽  
Clinical Symptoms ◽  
Vascular Diseases ◽  
Reference Network ◽  
Hereditary Haemorrhagic Telangiectasia ◽  
Care Providers ◽  
Autosomal Dominant Disorder ◽  
European Reference Network

Abstract Background Hereditary Haemorrhagic Telangiectasia (HHT) is an autosomal dominant disorder characterized by several clinical symptoms including epistaxis, arteriovenous malformations (AVM), and telangiectasia. In 2018, European Reference Network for Rare Vascular Diseases (VASCERN) recommended five outcome measures for HHT-patients to guide health care providers, some with limited experience in treating HHT, and thereby maximizing the number of HHT-patients receiving good care. The outcome measures cover the following aspects: (1) 90% of the patients should receive a pulmonary AVM (PAVM) screening; (2) 90% of the patients should receive written advice on nosebleed; (3) 70% should be assessed for iron deficiency; (4) 100% of the patients should receive written advice on antibiotic (AB) prophylaxis prior to dental and surgical procedures, and (5) 100% of relevant patients should receive written advice on pregnancy. We have introduced the outcome measures as Benchmarks in our HHT-centre and wanted to evaluate the extend of implementation we have achieved. We constantly struggle to secure the best possible treatment of our HHT-patients. Methods The study was a non-interventional retrospective study. Data was collected manually from patient records and from the Danish HHT-database. Results A total of 180 HHT-patients were included, all diagnosed in the period from January 1st, 2016, to December 31st, 2020. All patients were screened for PAVM. We could confirm that 66% of patients who had epistaxis received thoroughly advice. Assessment for iron deficiency was performed in 80% of the adult patients. Thoroughly advice on AB prophylaxis was documented in 75%. Thoroughly advice on pregnancy was documented in 80% of female patients 15–45 years of age. There were no significant differences over time for any of the outcome measures. Conclusions The Danish HHT-centre reached the target threshold for outcome measures 1 and 3. It could not be documented that the target thresholds for outcome measures 2, 4, and 5 were achieved. As information and education are a very important part of HHT care, focus on and documentation that all patients receive the relevant advice must be a priority in order to ensure best care.

scholarly journals A retrospective cohort study on European Reference Network for Rare Vascular Diseases 5 outcome measures for Hereditary Haemorrhagic Telangiectasia in Denmark

2021 ◽  
Author(s):  
Troels Hvelplund ◽  
Bibi Lange ◽  
Susanne Djernes Bird ◽  
Malene Korsholm ◽  
Anette Kjeldsen
Keyword(s):  
Iron Deficiency ◽  
Outcome Measures ◽  
Health Care Providers ◽  
Clinical Symptoms ◽  
Vascular Diseases ◽  
Reference Network ◽  
Hereditary Haemorrhagic Telangiectasia ◽  
Care Providers ◽  
Autosomal Dominant Disorder ◽  
European Reference Network

Abstract Background Hereditary Haemorrhagic Telangiectasia (HHT) is an autosomal dominant disorder characterized by several clinical symptoms including epistaxis, arteriovenous malformations (AVM), and telangiectasia. In 2018, European Reference Network for Rare Vascular Diseases (VASCERN) recommended five outcome measures for HHT-patients to guide health care providers, some with limited experience in treating HHT, and thereby maximizing the number of HHT-patients receiving good care. The outcome measures cover the following aspects: 1) 90% of the patients should receive a pulmonary AVM (PAVM) screening; 2) 90% of the patients should receive written advice on nosebleed; 3) 70% should be assessed for iron deficiency; 4) 100% of the patients should receive written advice on antibiotic (AB) prophylaxis prior to dental and surgical procedures, and; 5) 100% of relevant patients should receive written advice on pregnancy. We have introduced the outcome measures as Benchmarks in our HHT-centre and wanted to evaluate the extend of implementation we have achieved. We constantly struggle to secure the best possible treatment of our HHT-patients.Methods The study was a non-interventional retrospective study. All data was collected from medical journals and from the Danish HHT-database. Results A total of 180 HHT-patients were included, all diagnosed in the period from January 1st 2016 to December 31st 2020. All patients were screened for PAVM. We could confirm that 66% of patients who had epistaxis received thoroughly advice. Assessment for iron deficiency was performed in 80 % of the adult patients. Thoroughly advice on antibiotic prophylaxis was documented in 75%. Thoroughly advice on pregnancy was documented in 80% of female patients 15-45 years of age. There were no significant differences over time for any of the outcome measures. Conclusions The Danish HHT-centre reached the target threshold for outcome measures 1 and 3. We could not document reaching the target thresholds for outcome measures 2, 4, and 5. As information and education is a very important part of HHT care, we will focus on and document that all patients receive the relevant advice and as part of our care, we will in the near future implement an electronic solution with advice for HHT patients.

scholarly journals Introduction to Endo-ERN–scope and mission

Endocrine ◽  
2021 ◽  
Author(s):  
Alberto M. Pereira ◽  
Olaf Hiort
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Governance Structure ◽  
Reference Network ◽  
Care Providers ◽  
European Reference Network ◽  
Raising Awareness ◽  
European Reference Networks ◽  
Patient Representatives ◽  
Low Prevalence

AbstractThe official installation of the European Reference Networks in 2017 formed the foundation to improve quality and safety and access to highly specialized health care across the EU for patients affected by rare or low prevalence and complex conditions. The European Reference Network on Rare Endocrine Conditions (Endo-ERN) covers specific expertise from birth to senescence with a specific governance structure characterized by both a pediatric and an adult chair, and equal responsibilities for patient representatives and health care providers. The introduction on the scope and mission of Endo describes the complexity of the Endo-ERN mission and will thrive toward the ultimate aim and mission of the network of reducing health care inequalities across Europe. Specific knowledge and medical expertise of the existing rare endocrine condition is urgently needed, and therefore, raising awareness for Rare Disease Day from the Endo-ERN perspective is imperative.

Exploring patient education unmet needs for rare and complex connective tissue and musculoskeletal diseases: A survey of health care providers’ and patients’ expectations in Europe

2020 ◽  
pp. 174239532096861
Author(s):  
Meryem-Maud Farhat ◽  
Alain Cornet ◽  
Charissa Frank ◽  
Ilaria Galetti ◽  
Juergen Grunert ◽  
...  
Keyword(s):  
Health Care ◽  
Patient Education ◽  
Connective Tissue ◽  
Health Care Providers ◽  
Unmet Needs ◽  
Musculoskeletal Diseases ◽  
Connective Tissue Diseases ◽  
Reference Network ◽  
Care Providers ◽  
European Reference Network

Objective The European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases involves health care providers (HCPs) from 8 European countries and 7 patients’ representatives of European Patient Advocacy Groups. The objective was to evaluate current practice and unmet needs for patient education (PE) in Europe. Methods A questionnaire was sent to HCP members asking about the PE practices and another, to enquire about their needs, was sent to patients’ associations in the different countries. Results The questionnaire was completed by 33 HCPs. Half had no specific staff members dedicated to PE. For HCPs with dedicated staff, 83.3% (n = 11) considered that care providers were insufficient to meet patients’ needs. Most of HCPs would like to see the practice of PE standardized. Sixty eight percent (n = 1093) of patients suffering from connective tissue diseases completed the questionnaire had never heard about PE. Most of them were interested in taking part in a PE program. Discussion Our survey revealed a strong interest in PE among patients and HCP and heterogeneity of practice. PE appeared important for both HCPs and patients. An online course for medical students in Europe will be developed in partnership with EULAR to respond to these unmet needs.

scholarly journals Educational and knowledge gaps within the European Reference Network on Rare Endocrine Conditions

2020 ◽  
Author(s):  
Violeta Iotova ◽  
Camilla Schalin-Jantti ◽  
Petra Bruegman ◽  
Manuela Broesamle ◽  
Natasa Bratina ◽  
...  
Keyword(s):  
Health Care Providers ◽  
National Language ◽  
Reference Network ◽  
Endocrine Disorders ◽  
Care Providers ◽  
Knowledge Gaps ◽  
Eu Member States ◽  
European Reference Network ◽  
On Line ◽  
Design And Methods

Objective: The European Reference Network on Rare Endocrine Conditions (Endo-ERN), operational since 2017, consists of 71 health care providers (HCPs) in 19 EU member states. Our objective was to assess education and knowledge on rare endocrine conditions. Design and Methods: A survey was developed and sent through the DIGIT-EUROSURVEY system to all Endo-ERN HCPs. Results: Response rate was 55% (n=146), 95% physicians, 58% >20 years of experience, 96% academics. Largest knowledge gaps were reported for the transition and neonatal ages, and for the GPs. Less than 50% of HCPs had structured educational rare diseases (RD) plans, while 86% used RD specific guidelines. HCPs would share educational materials within Endo-ERN (74%), and participate in an accreditation model (85%). E-learning portals of the endocrine scientific societies used 58% (ESPE) and 64% (ESE). Most participants (90%) regarded Endo-ERN coordinated educational activities (annual meetings slots, webinars, etc.) as highly important and supported a common educational platform. Social media was perceived as important for educating patients (86%) but not for physicians (36%). Seventy-five % had developed patient education materials; only 31% had specific children’s materials, and by-country availability varied from 0% to 100%. Respondents provided newly diagnosed patients with own material in the national language (81%); referred to advocacy groups (68%), and relevant on-line sources (50%). Respondents believed European Commission should fund education through Endo-ERN. Conclusion: Identified knowledge gaps in rare endocrine disorders set the basis for fast catch-up through collaboration, alignment with patients’ needs, and further development of existing and newly developed educational resources.

scholarly journals eHealth for patients with rare diseases: the eHealth Working Group of the European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN)

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Alessia Paglialonga ◽  
Raffaella Gaetano ◽  
Leema Robert ◽  
Marine Hurard ◽  
Luisa Maria Botella ◽  
...  
Keyword(s):  
Rare Diseases ◽  
Working Group ◽  
Vascular Diseases ◽  
Mobile App ◽  
Reference Network ◽  
Training And Education ◽  
Digital Platforms ◽  
Patient Organizations ◽  
European Reference Network ◽  
Strategic Assets

Abstract Background The European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN) was launched in 2017 and involves, to date, 35 highly specialised multidisciplinary expert centres (from the 30 full Healthcare Provider members) coming from 11 countries and more than 70 patient organizations from 16 countries. The eHealth Working Group (WG) of VASCERN was set up to develop practical, patient-centred solutions and strategies for effective use of eHealth tools to answer the needs of patients with multisystemic vascular rare diseases. The eHealth WG Following the identified patients’ needs and following the guiding principles of collaboration and patient-centredness, the eHealth WG was created with the following aims: to develop a mobile app to help patients find expert centres and patient organizations, and to develop resources (Pills of Knowledge, PoK) for training and education via digital platforms (eLearning). The mobile app includes, to date, functionalities that allow users to find expert centres and patient organizations across Europe in the area of rare multisystemic vascular diseases. Discussed app developments include personalized digital patient passports, educational material, emergency management guidelines and remote consultations. Regarding training and education, a variety of PoK have been developed. The PoK cover several topics, target several user groups, and are delivered in various formats so that they are easy-to-use, easy-to-understand, informative, and viable for delivery and sharing through digital platforms (eLearning) including, e.g., the VASCERN YouTube™ channel. Conclusion Overall, the work carried out by the eHealth WG of VASCERN can be seen as a pilot experience that may serve as a basis to for collaborative development of patient-centred eHealth tools that answer the needs of patients with various rare diseases, not limited to rare multisystemic vascular diseases. By expanding the multidisciplinary approach here described, clinical and research networks can take advantage of eHealth services and use them as strategic assets in achieving the ultimate goal of ensuring equity of access to prevention programs, timely and accurate diagnosis and specialized care for patients with rare diseases throughout Europe.

scholarly journals Pre and Post Test Clinical Study to Assess the Combined Effect of Brihatyadi Ksheera Kashaya, Chandraprabhavati and Shweta Parpati in Urinary Tract Infection

2021 ◽  
pp. 21-26
Author(s):  
Anjana.S ◽  
Mahesh.C.Kundagol ◽  
Devipriya Soman ◽  
James Chacko
Keyword(s):  
Urinary Tract ◽  
Health Care Providers ◽  
Urine Analysis ◽  
Clinical Symptoms ◽  
Urine Culture ◽  
Combined Effect ◽  
Rank Test ◽  
P Value ◽  
Care Providers ◽  
Post Test

Purpose: UTI is the broad term used to describe infection of any part of urinary tract and is a problem frequently encountered by health care providers today. E.coli is found to be the main causative agent for causing UTI (80%). The prevalence of UTI are increasing and the present standard of care includes the usage of antibiotics. The alarming and exponential use of nonspecific antibiotics, increased resistance and the high cost of prescribed medications for the management of the infective microorganisms will raise the need for alternate and safe medication. The signs and symptoms of Mutrakruchra and UTI are similar in nature. The combination of Brihatyadi Ksheera Kashaya, Chandraprabhavati and Shweta Parpati is widely practiced in Mutrakruchra. The present study was aimed at exploring the combined effect of the above combination in UTI. Materials and Methods: The present study was a single group study with pre and post test study design. 20 diagnosed cases of UTI based on ICD10N39.0 diagnostic criteria and proper exclusion were selected from IPD and OPD of Amrita Ayurveda Hospital. They were administered Brihatyadi Ksheera Kashaya, Chadraprabhavati and Shweta Parpati for 15 days. Result: The obtained data were analyzed statistically with symptoms of UTI, Urine analysis and urine culture by using Wilcoxon signed rank test done on the 0th and 16th day. There was significant change with 100% of improvement in clinical symptoms of UTI after treatment. Statistically significant result was obtained in reduction of WBC with p value 0.001, Epithelial cells with p value 0.005, and Nitrites, Leucocyte esterase, Bacteria with p value 0.0001. There was reduction in growth of E.coli in urine culture with statistically significant p value 0.0001. Conclusion: The combination of Brihatyadi Ksheera Kashaya, Chandraprabhavari and Shwetaparpati is effective in UTI.

scholarly journals Evaluation of Quality Assurance of Activity against Accreditation Norms of the Imaging Services in a Tertiary Care Teaching Hospital

2021 ◽  
Vol 11 (9) ◽  
pp. 172-177
Author(s):  
Padmini Kumari B ◽  
G Vijay Kumar ◽  
K. Ravi Babu
Keyword(s):  
Quality Assurance ◽  
Outcome Measures ◽  
Health Care Providers ◽  
Quality Care ◽  
Tertiary Care ◽  
Care Providers ◽  
Quality Assurance Programme ◽  
College Hospital ◽  
Cross Sectional ◽  
Process And Outcome

Purpose of Study: To study the radiological and imaging services in terms of Quality Assurance in relation to accreditation norms. Methods: We performed cross sectional evaluation of the data obtained from the participants in the study Semi structured both open and closed ended questionnaire were administered among the participants who were agreed to participate in the study. The questionnaire was formulated to evaluate different parameters of Quality Assurance Programme (QAP). The parameters were divided into structure, process and outcome measures and were derived from literature [National Accreditation Board for Hospitals and Health care Providers during accreditation of healthcare institutions]. Results: The radiology and imaging services of Vydehi Medical College Hospital was established in the year 2002, and was approved by AERB (Atomic Energy Regulatory Board) in the year 2007. The department was renewed by AERB in the year 2012. Checklist was formulated which includes several parameters in terms of structure, process and outcome measures. Conclusion: Quality assurance programme is to provide good patient timely care and the policies adopted by the department of radiology and imaging service in terms of quality are on par with standard guidelines in our study. Safe and sustainable quality care is the need of the hour and it can be practically achieved by regular monitoring of the quality assurance programme. Key words: Quality assurance; Imaging services; Utilisation; Guidelines; Healthcare

New Challenges for Public Health Care: Biological and Chemical Weapons Awareness, Surveillance, and Response

2003 ◽  
Vol 4 (4) ◽  
pp. 244-250 ◽  
Author(s):  
Joseph P. Dudley
Keyword(s):  
Public Health ◽  
Health Care ◽  
Health Care Providers ◽  
Clinical Symptoms ◽  
The United States ◽  
Public Health Care ◽  
Surveillance Systems ◽  
Care Providers ◽  
First Line ◽  
Nursing Professionals

Recent events in the United States have demonstrated a critical need for recognizing nurses and emergency health care providers as important elements of the nation’s first line of defense and response against terrorist attacks involving biological, chemical, or radiological weapons. The anthrax letter attacks of September/October 2001 demonstrate the importance of vigilance and attention to detail while interviewing and attending patients and when entering, reviewing, and cataloging patient records. Nursing professionals, emergency care responders, and physicians can perform a crucial role in our first-line defense against terrorism by detecting and reporting unusual or anomalous illness(es) consistent with possible exposure to biological or chemical agents. Nursing professionals should become more familiar with the etiology and clinical symptoms of biological agents of greatest current concern (smallpox, anthrax, tularemia, plague) and be alert for potentially anomalous or unfamiliar combinations of symptoms that could point to unwitting exposure to biological toxins, toxic chemicals, or cryptic radiological agents. Public health surveillance systems must be developed that encourage and facilitate the rapid reporting and follow-up investigation of suspect illnesses and potential disease outbreaks that will ensure early identification and response for covert attacks involving biological, chemical, or radiological weapons.

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