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 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.

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.

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 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 Knowledge and attitudes of tuberculosis management in San Juan de Lurigancho district of Lima, Peru

2009 ◽  
Vol 3 (10) ◽  
pp. 783-788 ◽  
Author(s):  
Elizabeth M. Kiefer ◽  
Theresa Shao ◽  
Olveen Carrasquillo ◽  
Pamela Nabeta ◽  
Carlos Seas
Keyword(s):  
Health Care ◽  
Community Health ◽  
Community Health Workers ◽  
Health Care Providers ◽  
Health Workers ◽  
Knowledge Score ◽  
San Juan ◽  
Care Providers ◽  
Knowledge Gaps ◽  
Knowledge And Attitudes

Background: Expansion of the health care workforce in Peru to combat tuberculosis (TB) includes both professional health care providers (HCPs) such as doctors and nurses, and non-professional HCPs such as community health workers (CHWs). We describe the knowledge and attitudes of these HCPs, and identify modifiable barriers to appropriate anti-tuberculosis treatment.  Methodology: We surveyed HCPs practicing in 30 clinical settings (hospitals, community health centers, and health posts) in the San Juan de Lurigancho district of Eastern Lima, Peru. Multiple-choice questions were used to assess knowledge of TB. A five-item Likert scale was created to assess attitudes toward the community, patients, and clinics. Linear regression was used to identify predictors of mean knowledge score, and analysis of variance was used to test differences in HCP score.  Results: Of the 73 HCPs surveyed, 15% were professionals (doctors or nurses). The remaining 85% were health technicians, community health workers (CHWs) or students. The mean knowledge score was 10.0 ± 1.9 (maximum 14) with professional HCPs scoring higher than other HCPs (11.7 ± 1.1 vs. 9.7 ± 1.9), p < .01). Knowledge gaps included identification of patients at high risk for TB, assessment of treatment outcomes, and consequences of treatment failure. The most commonly cited modifiable barriers were structural, including laboratory facilities and staffing of TB clinics, with 52.1% and 62.5% of HCPs, respectively, citing these as problematic.  Conclusions: Efforts to improve knowledge of TB HCPs in Peru should focus on the specific gaps we have identified. Further research is needed to evaluate whether these knowledge gaps correlate with TB control.     

scholarly journals Increasing incidence of primary aldosteronism in Western Sweden during three decades – Yet an underdiagnosed disorder

2021 ◽  
Author(s):  
Eleftheria Gkaniatsa ◽  
Eva Ekerstad ◽  
Manuela Gavric ◽  
Andreas Muth ◽  
Penelope Trimpou ◽  
...  
Keyword(s):  
General Population ◽  
Health Care Providers ◽  
Primary Aldosteronism ◽  
Secondary Hypertension ◽  
Annual Incidence ◽  
Diagnostic Code ◽  
Care Providers ◽  
National Patient ◽  
Low Prevalence ◽  
Design And Methods

Abstract Context Primary aldosteronism (PA) is the most common cause of secondary hypertension. Yet, the incidence of PA in the general population has not been studied. Objective To estimate the incidence of PA in the general population. Design and methods Patients who had received a diagnostic code for PA between 1987 and 2016 were identified in the Swedish National Patient Registry. Assessment of clinical and biochemical data was used to validate the diagnosis. The annual incidence of PA was calculated by using the number of inhabitants in the Västra Götaland County as reference. Results Of 570 identified patients, 473 (83 %) had confirmed PA. Eligible for the incidence analysis were 416 patients, 248 (60%) men and 168 (40%) women, diagnosed with PA between 1987-2016. The mean (±standard deviation) age at diagnosis was 56±12 years. The median (interquartile range) annual incidence was 2 (1-2) cases per million between 1987 and 1996, 6 (4-9) cases per million between 1997 and 2006 and 17 (12-24) cases per million between 2007 and 2016. At the end of the study (December 31 st 2016), 386 patients with confirmed PA were alive and living in the Västra Götaland County, giving a prevalence of 231 cases per million (0.022%). Conclusions Despite increasing incidence, the proportion of patients identified with PA is lower than expected. Given the serious consequences of untreated PA, the noticeably low prevalence at the end of the study stresses the need to increase the awareness of PA among health care providers.

scholarly journals A multidimensional approach to inform family planning needs, preferences and behaviours amongst women in South Africa through body mapping

2019 ◽  
Vol 16 (1) ◽  
Author(s):  
Jane Harries ◽  
Deborah Constant ◽  
Vanessa Wright ◽  
Chelsea Morroni ◽  
Alex Müller ◽  
...  
Keyword(s):  
South Africa ◽  
Reproductive Health ◽  
Health Care Providers ◽  
Sexual And Reproductive Health ◽  
Care Providers ◽  
Contraceptive Methods ◽  
Knowledge Gaps ◽  
Body Mapping ◽  
Reproductive Anatomy ◽  
Contraceptive Prevalence

Abstract Background In recent decades there have been great improvements in the reproductive health of women in low- and middle-income countries and increases in the use of modern contraceptive methods. Nonetheless, many women are not able to access information, contraceptive technologies and services that could facilitate preventing unintended pregnancies and planning the number and timing of desired pregnancies. In South Africa, the contraceptive prevalence rate is 64.6%. However, this relatively high contraceptive prevalence rate masks problems with quality contraceptive service delivery, equitable access, and women’s ability to correctly and consistently, use contraceptive methods of their choice. This study set out to understand the specific family planning and contraceptive needs and behaviours of women of reproductive age in South Africa, through a lived experience, multisensory approach. Methods Participatory qualitative research methods were used including body mapping workshops amongst reproductive aged women recruited from urban and peri urban areas in the Western Cape South Africa. Data including body map images were analysed using a thematic analysis approach. Results Women had limited biomedical knowledge of the female reproductive anatomy, conception, fertility and how contraceptives worked, compounded by a lack of contraceptive counseling and support from health care providers. Women’s preferences for different contraceptive methods were not based on a single, sensory or experiential factor. Rather, they were made up of a composite of sensory, physical, social and emotional experiences underscored by potential for threats to bodily harm. Conclusions This study highlighted the need to address communication and knowledge gaps around the female reproductive anatomy, different contraceptive methods and how contraception works to prevent a pregnancy. Women, including younger women, identified sexual and reproductive health knowledge gaps themselves and identified these gaps as important factors that influenced uptake and effective contraceptive use. These knowledge gaps were overwhelmingly linked to poor or absent communication and counseling provided by health care providers. Body mapping techniques could be used in education and communication strategies around sexual and reproductive health programmes in diverse settings.

Hepatitis C: Nutrition Care Canadian Guidelines for Health Care Providers

2003 ◽  
Vol 64 (3) ◽  
pp. 139-141 ◽  
Keyword(s):  
Health Care ◽  
Hepatitis C Virus ◽  
Hepatitis C ◽  
Health Care Providers ◽  
Scientific Evidence ◽  
Critical Role ◽  
Care Providers ◽  
Nutrition Care ◽  
On Line ◽  
Accepted Practice

Nutrition plays a critical role in the management of hepatitis C. Dietitians of Canada has developed comprehensive, evidencebased guidelines to familiarize health care providers with effective nutrition care for the growing number of Canadians infected with the hepatitis C virus. The complete guidelines and two supporting educational fact sheets are available for downloading from http://www.dietitians.ca/resources/HepatitisC_Guidelines.htm . The guidelines and fact sheets are available in both English and French. The guidelines contain the full text, practice essentials, references, and extensive appendices with practical tools to assist educators in promoting nutrition to persons infected with the hepatitis C virus. Reprinting or photocopying of the document is encouraged provided the source is acknowledged. In addition, an on-line education course is available for health care providers and is available on www.dieteticsatwork.ca . These guidelines are directed to all health care providers who are in a position to offer nutrition-related advice and guidance to persons infected with the hepatitis C virus, in all stages of the disease. A national advisory committee comprised of leading authorities in Canada steered the development of the guidelines. The guidelines are based on the best information available at the time of publication; where scientific evidence was not available, best-accepted practice is presented.

scholarly journals Iowa Dependent Adult Abuse Prosecutions From 2006 Through 2015: Health Care Providers’ Concern

2017 ◽  
Vol 8 (3) ◽  
pp. 153-162 ◽  
Author(s):  
Jeanette M. Daly ◽  
Yinghui Xu ◽  
Gerald J. Jogerst
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Care Providers ◽  
Protective Services ◽  
Department Of Agriculture ◽  
Adult Protective Services ◽  
The Us ◽  
State Association ◽  
Government Data ◽  
Design And Methods

Background: In most states, health care providers are required to report abuse. Some states provide investigation feedback/findings to the reporter. The reporters rarely know if the perpetrator is convicted. The purposes of this study are to determine the incidence of Iowa dependent adult abuse prosecutions from 2006 through 2015, the incidence of convictions, and the association between dependent adult abuse prosecutions with county census and government characteristics. Design and Methods: Through the Iowa Court Information Systems, dependent adult abuse prosecution data were purchased for a 10-year time period. County demographics were obtained through the US Census and government data were Iowa State Association of Counties and the US Department of Agriculture. Results: During 2006-2015, there were 368 dependent adult abuse prosecution cases accounting for 482 original charges. Exploitation greater than $100 was the dependent adult abuse charge most frequently cited. Within the 10 years, it accounted for 60% of the original charges. Of the 482 disposed charges, 251 (52%) of the charges were dismissed. A total of 122 (14%) counts resulted in probation, 73 resulted in prison, and 37 in jail. Conclusions: For the first time, information about dependent adult abuse prosecutions in Iowa is available. The latter 5 years, 2011 to 2015, of dependent adult abuse prosecutions are significantly higher than the first 5 years, 2006 to 2010. This project encourages health care providers to report dependent adult abuse to law enforcement if appropriate as well as adult protective services.

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