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Education and information needs for physicians about rare diseases in Spain.

ABSTRACT: BACKGROUND:Rare diseases are a priority objective for public health systems. Given its complexity, late and misdiagnoses occur very often which causes mental and physical burden for patients and family. This would be caused, in part, for unprepared clinicians in this field. The aim of this study was to report the training needs and the perceived shortcomings of Spanish physicians of the public health system in the diagnosis, treatment and monitoring of patients with rare diseases. METHODS:We used a descriptive cross-sectional study through an "ad hoc" survey of 26 questions was completed by 132 primary care physicians and 37 specialists during April and May 2018. RESULTS:Less than a third of the physicians had received training in rare disease during their undergraduate or postgraduate years, and for hospital professionals, they received more training in the postgraduate period. CONCLUSION:Primary care physicians and specialists showed low training level in rare diseases. An academical and continuous program on rare disease, as well as, multidisciplinary units and high quality practice guidelines are necessary to help to prevention and support clinical decisions and improve quality of care of patients and families.

SUBMITTER: Ramalle-Gomara E

PROVIDER: S-EPMC6969468 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

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Education and information needs for physicians about rare diseases in Spain.

Ramalle-Gómara Enrique E Domínguez-Garrido Elena E Gómez-Eguílaz María M Marzo-Sola María Eugenia ME Ramón-Trapero José Luis JL Gil-de-Gómez Josefa J

Orphanet journal of rare diseases 20200117 1

<h4>Background</h4>Rare diseases are a priority objective for public health systems. Given its complexity, late and misdiagnoses occur very often which causes mental and physical burden for patients and family. This would be caused, in part, for unprepared clinicians in this field. The aim of this study was to report the training needs and the perceived shortcomings of Spanish physicians of the public health system in the diagnosis, treatment and monitoring of patients with rare diseases.<h4>Met ...[more]

PMID: 31952528

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Project description:BackgroundLate and misdiagnoses of rare disease patients are common and often result in medical, physical and mental burden for the patient, and financial and emotional burden for the patient's family. Low rare disease awareness among physicians is believed to be one of the reasons for these late and misdiagnoses of rare disease patients. The aim of this study was to investigate how information and education could be tailored to the needs and preferences of physicians in Belgium to increase their rare disease awareness and support them in diagnosing patients with a rare disorder. Nine exploratory interviews with Belgian rare disease experts were performed in December 2016 to help the development of a questionnaire on information needs of physicians and their consulted information sources in rare disease awareness and diagnosis. This online questionnaire was then completed by Belgian physicians (n = 295), including general practitioners (GPs), pediatricians and other specialists (i.e. neurologists, pediatric neurologists, endocrinologists and pediatric endocrinologists) during January and February 2017.ResultsRare disease knowledge and awareness were the lowest among GPs and the highest among specialists. Interviewed experts indicated that physicians' academic and continuous medical education should be focused more on "red flags" to increase rare disease attentiveness in daily clinical practice. GPs scored their academic education on rare diseases as insufficient but pediatricians and other specialists scored it significantly better (p < 0.001). Even though GPs declared to only need information on rare diseases when having a rare disease patient in their practice, specialists indicated to need more rare disease information in general. Most physicians confirmed that they had specific information needs regarding rare diseases. Unlike specialists, the majority of GPs were unaware of information sources such as Orphanet.ConclusionIn order to effectively support physicians in Belgium to diagnose rare diseases early, the academic medical education on rare diseases should be revised. Teaching methods should be focused more on casuistry and "red flags". An Orphanet-like digital platform about rare disease symptoms, diagnostic tests and reference centers might be ideal to support correct and timely diagnosis.

Project description:A rare disease is generally defined as a condition which affects about 1 among 2000 people and currently, there are approximately 5000-8000 rare diseases (RDs) affecting over 400 million people world-wide. Although RDs may arise from different causes such as infections and environmental factors, about 80% are caused by genetic abnormalities. In Tanzania, there are no reports of the types of RDs, their incidence, distribution and numbers of individuals affected. In addition, there have been no strategies to map RDs in the country and develop a definition that fits the local context. Public awareness and understanding of RDs are very limited, and these lead to poor management and stigmatisation of patients. To address the ongoing problems, Tanzania joined other countries world-wide and global partners to commemorate the rare diseases day (RDD) for the first time in 2016 and subsequently every year. Unlike previous years where the RDD was organised by Ali Kimara Rare Diseases Foundation (AKRDF) with few partners, in 2020, a bigger event was co-hosted by Ali AKRDF and Tanzania Human Genetics Organization together with government representatives and other multiple partners. The organisers, government representatives and participants proposed a national "Call for Action" with the overall goal of improving the lives of patients/individuals with RDs. The call focuses and aims to address 17 strategic issues that are broadly categorised into four areas. These include generating demographic data of individuals with RDs; advocating for policies and guidelines for diagnosis, care, treatment and health financing; developing policies supporting public education, awareness and advocacy; and strengthening research, innovation and public-private partnerships. If adopted and implemented, the potential impacts of these recommendations will include improved access to adequate and high-quality health and education services, and policies and guidelines to address the current and future challenges facing individuals with RDs and their families.

Project description:BackgroundDigitalization and the increasing availability of online information have changed the way in which information is searched for and retrieved by the public and by health professionals. The technical developments in the last two decades have transformed the methods of information retrieval. Although systematic evidence exists on the general information needs of specialists, and in particular, family physicians (FPs), there have been no recent systematic reviews to specifically address the needs of FPs and any barriers that may exist to accessing online health information.ObjectiveThis review aims to provide an up-to-date perspective on the needs of FPs in searching, retrieving, and using online information.MethodsThis systematic review of qualitative and quantitative studies searched a multitude of databases spanning the years 2000 to 2020 (search date January 2020). Studies that analyzed the online information needs of FPs, any barriers to the accessibility of information, and their information-seeking behaviors were included. Two researchers independently scrutinized titles and abstracts, analyzing full-text papers for their eligibility, the studies therein, and the data obtained from them.ResultsThe initial search yielded 4541 studies for initial title and abstract screening. Of the 144 studies that were found to be eligible for full-text screening, 41 were finally included. A total of 20 themes were developed and summarized into 5 main categories: individual needs of FPs before the search; access needs, including factors that would facilitate or hinder information retrieval; quality needs of the information to hand; utilization needs of the information available; and implication needs for everyday practice.ConclusionsThis review suggests that searching, accessing, and using online information, as well as any pre-existing needs, barriers, or demands, should not be perceived as separate entities but rather be regarded as a sequential process. Apart from accessing information and evaluating its quality, FPs expressed concerns regarding the applicability of this information to their everyday practice and its subsequent relevance to patient care. Future online information resources should cater to the needs of the primary care setting and seek to address the way in which such resources may be adapted to these specific requirements.

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Education and information needs for physicians about rare diseases in Spain.

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Education and information needs for physicians about rare diseases in Spain.

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