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.

Refugee and Immigrant Women’s Experience of Postpartum Depression: A Meta-Synthesis

2017 ◽  
Vol 29 (1) ◽  
pp. 84-100 ◽  
Author(s):  
Carolyn L. Tobin ◽  
Pam Di Napoli ◽  
Cheryl Tatano Beck
Keyword(s):  
Health Care ◽  
Postpartum Depression ◽  
Health Care Providers ◽  
Help Seeking ◽  
Immigrant Women ◽  
Care Providers ◽  
Policy Makers ◽  
Raising Awareness ◽  
Effective Care ◽  
Insight Into

The aim of this work is to synthesize qualitative research on refugee and immigrant women’s experiences of postpartum depression (PPD) to gain insight into the unique needs of this group of women. This population is more at risk of developing PPD due to a complexity of issues including pre- and postmigratory stressors; however, there is currently little research on this topic available to health care providers and policy makers. Thirteen articles met inclusion criteria, and five themes emerged from the meta-synthesis: (a) suffering in solitude, (b) the invisible illness, (c) cultural conceptualizations, (d) barriers to help seeking, and (e) facilitators of help seeking. Conclusions suggest immigrant women with PPD may lack understanding of their condition, are often isolated, are alone, fear stigmatization, and risk being considered an unfit mother. Raising awareness with health care providers of the meaning of PPD for immigrant women is key to the provision of effective care.

scholarly journals Raising awareness of health care providers in Nara for patients' care through multidisciplinary workshop “MAHOLOBA”

2015 ◽  
Vol 26 ◽  
pp. vii87
Author(s):  
Teruhisa Azuma ◽  
Yusaku Akashi ◽  
Masatoshi Kannno ◽  
Shinnya Kobayashi ◽  
Koyama Hiroshi ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Care Providers ◽  
Raising Awareness

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 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 Raising awareness of health care providers about MERSCoV infection in public hospitals in Mecca, Saudi Arabia

2017 ◽  
Vol 23 (8) ◽  
pp. 534-542 ◽  
Author(s):  
Mohamed O. Nour ◽  
Ahmed O. Babalghith ◽  
Hatim A. Natto ◽  
Sallahaldeen M. Alawneh ◽  
Fowzi O. Elamin
Keyword(s):  
Health Care ◽  
Saudi Arabia ◽  
Health Care Providers ◽  
Public Hospitals ◽  
Care Providers ◽  
Raising Awareness

scholarly journals Availability, accessibility and delivery to patients of the 28 orphan medicines approved by the European Medicine Agency for hereditary metabolic diseases in the MetabERN network

2020 ◽  
Vol 15 (1) ◽  
Author(s):  
Jean-Michel Heard ◽  
◽  
Charlotte Vrinten ◽  
Michael Schlander ◽  
Cinzia Maria Bellettato ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
European Medicine Agency ◽  
Metabolic Diseases ◽  
Reference Network ◽  
Care Providers ◽  
Medicinal Products ◽  
Stage Of Development ◽  
Orphan Medicinal Products ◽  
Hereditary Metabolic Diseases

Abstract Background The European Medicine Agency granted marketing approval to 164 orphan medicinal products for rare diseases, among which 28 products intended for the treatment of hereditary metabolic diseases. Taking advantage of its privileged connection with 69 healthcare centres of excellence in this field, MetabERN, the European Reference Network for hereditary metabolic diseases, performed a survey asking health care providers from 18 European countries whether these products are available on the market, reimbursed and therefore accessible for prescription, and actually delivered in their centre. Results Responses received from 52 centres (75%) concerned the design of treatment plans, the access to marketed products, and the barriers to delivery. Treatment options are always discussed with patients, who are often involved in their treatment plan. Most products (26/28) are available in most countries (15/18). Among the 15 broadly accessible products (88.5% of the centres), 9 are delivered to most patients (mean 70.1%), and the others to only few (16.5%). Among the 10 less accessible products (40.2% of the centres), 6 are delivered to many patients (66.7%), and 4 are rarely used (6.3%). Information was missing for 3 products. Delay between prescription and delivery is on average one month. Beside the lack of availability or accessibility, the most frequent reasons for not prescribing a treatment are patients’ clinical status, characteristic, and personal choice. Conclusions Data collected from health care providers in the MetabERN network indicate that two-third of the orphan medicines approved by EMA for the treatment of hereditary metabolic diseases are accessible to treating patients, although often less than one-half of the patients with the relevant conditions actually received the approved product to treat their disease. Thus, in spite of the remarkable achievement of many products, patients concerned by EMA-approved orphan medicinal products have persistent unmet needs, which deserve consideration. The enormous investments made by the companies to develop products, and the high financial burden for the Member States to purchase these products emphasize the importance of a scrupulous appreciation of treatment value involving all stakeholders at early stage of development, before marketing authorization, and during follow up.

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 DEVELOPMENT OF A TAILORED EDUCATIONAL PROGRAM TO ASSESS FALL RISK AND PREVENT FALLS FOR DIVERSE OLDER ADULTS.

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S854-S855
Author(s):  
Ladda Thiamwong ◽  
Norma E Conner
Keyword(s):  
Older Adults ◽  
Risk Assessment ◽  
Health Care ◽  
Health Care Providers ◽  
Race And Ethnicity ◽  
Fall Risk ◽  
Educational Program ◽  
Risk Awareness ◽  
Care Providers ◽  
Raising Awareness

Abstract Background: There is limited data on personal use fall prevention programs, and the relationship of race and ethnicity on fall risk awareness, personal beliefs, behavior change, and response to intervention. Objective: The aim of this study was to develop an educational program to prevent falls for ethnically diverse older adults. This program will be a culturally attuned program that values diversity and seeks to eliminate words and behaviors that might be discriminatory based on racial/ethnic or cultural identity. Methods: Three steps were used to develop the program: 1) constructing content domains; 2) generating the program draft; and 3) judging the program domain and content. The content domains were constructed based on data from a conventional content analysis of four focus groups from older participants (n=28) and their family caregivers (n=4), and individual in-depth interviews from health care providers (n=8). We generated the program outline with three response choices. Eight older participants and two health care providers rated it. Results: The program consisted of risk assessment, outreaching and raising awareness and knowledge. Risk assessment: all participants suggested that risk assessment should consists of objective and subjective measures. Outreaching: participants agreed that group-teaching and individual learning by peer coaching based on their culture, new blasts, brochures, and family-based approaches were the best outreaching methods that they preferred. They identified that raising awareness and knowledge should include the following topics: performing physical activity with fall risk awareness, medication management, visual care, behavioral adaptation with appropriate accessories /equipment, and environmental safety.

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