General Practice Care for Patients with Rare Diseases in Belgium. A Cross-Sectional Survey.

Abstract:

:There are almost no studies about rare diseases in general practice. This study examined care characteristics of active rare disease patients in the Belgian Network of Sentinel General Practices (SGP) and the importance of rare diseases in general practice by its caseload, general practitioner (GP)⁻patient encounter frequency and nationwide prevalence. The SGP reported data about: (i) the number of active rare disease patients in 2015; and (ii) characteristics of one to three most recently seen patients. Rare diseases were matched against Orphanet (www.orpha.net). GP encounter frequency and patients' age were compared to the total general practice population. Details from 121 active patients (median age: 44, interquartile range (IQR) 24⁻60) showed that for 36.9% the GP had been the first caregiver for the rare disease and for 35.8% the GP established a diagnostic referral. GPs rated their knowledge about their patients' disease as moderate and used Orphanet for 14.9% of patients. Any active rare disease patients (median: 1, IQR 0⁻2) were reported by 66 of 111 SGP. Compared to the total general practice population, the mean GP encounter frequency was higher (7.3; 95% confidence intervals (CI) 6.1⁻8.5 versus 5.4; 95% CI 5.4⁻5.4). The prevalence of rare diseases in the Belgian general practice population was estimated at 12.0 (95% CI 10.3⁻13.9) per 10,000. This study acknowledges the important role of GPs in rare disease care. Knowledge and use of Orphanet by GPs could be improved.

authors

Boffin N,Swinnen E,Wens J,Urbina M,Van der Heyden J,Van Casteren V

doi

10.3390/ijerph15061180

subject

Has Abstract

pub_date

2018-06-05 00:00:00

issue

6

eissn

1661-7827

issn

1660-4601

pii

ijerph15061180

journal_volume

15

pub_type

杂志文章
  • Association between chronic arsenic exposure and nutritional status among the women of child bearing age: a case-control study in Bangladesh.

    abstract::The role of nutritional factors in arsenic metabolism and toxicity is yet to be fully elucidated. A low protein diet results in decreased excretion of DMA and increased tissue retention of arsenic in experimental studies. Malnourished women carry a higher risk of adverse pregnancy outcomes. Chronic exposure to high ar...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph7072811

    authors: Milton AH,Shahidullah SM,Smith W,Hossain KS,Hasan Z,Ahmed KT

    更新日期:2010-07-01 00:00:00

  • An Assessment of Urban Park Access Using House-Level Data in Urban China: Through the Lens of Social Equity.

    abstract::The various benefits of urban green space are gaining increasing attention nowadays. Hence, the distribution of green space has become a scrutinized concern for spatial equity among local governments and the planning scholars. This study is the first quantitative evaluation of urban park accessibility using house-leve...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph17072349

    authors: Yu S,Zhu X,He Q

    更新日期:2020-03-31 00:00:00

  • Placement of Outdoor Exercise Equipment and Physical Activity: A Quasi-Experimental Study in Two Parks in Southern California.

    abstract::To reduce the burden of chronic disease, the Centers for Disease Control and Prevention (CDC) funded the Orange County Partnerships to Improve Health (OC-PICH) project in Orange County, California. One of the strategies included adding outdoor exercise equipment (OEE) in two parks in Garden Grove and Anaheim. Using a ...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph17072605

    authors: Sami M,Smith M,Ogunseitan OA

    更新日期:2020-04-10 00:00:00

  • Variations in the Rate of Infestations of Dogs with Zoonotic Nematodes and the Contamination of Soil in Different Environments.

    abstract::Companion animals are an important aspect in human life. However, they may also be considered a source of pathogens. An example of zoonotic parasitoses is toxocarosis or cutaneous larva migrans (CLM). The aim of the study was to detect zoonotic nematodes of dogs living in different areas and the intensity of contamina...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph14091003

    authors: Studzińska MB,Demkowska-Kutrzepa M,Borecka A,Meisner M,Tomczuk K,Roczeń-Karczmarz M,Kłapeć T,Abbass Z,Cholewa A

    更新日期:2017-09-01 00:00:00

  • Designing and Facilitating Collaborative Research Design and Data Analysis Workshops: Lessons Learned in the Healthy Neighborhoods Study.

    abstract::One impediment to expanding the prevalence and quality of community-engaged research is a shortage of instructive resources for collaboratively designing research instruments and analyzing data with community members. This article describes how a consortium of community residents, grassroots community organizations, a...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph16030324

    authors: Binet A,Gavin V,Carroll L,Arcaya M

    更新日期:2019-01-24 00:00:00

  • The Impact of Robotic Rehabilitation on the Motor System in Neurological Diseases. A Multimodal Neurophysiological Approach.

    abstract::Motor disability is a key feature of many neurological diseases, influencing the social roles of affected patients and their ability to perform daily life activities. Current rehabilitation capacities are overwhelmed by the age-related increase of motor dysfunctions seen, for example, in stroke, extrapyramidal or neur...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph17186557

    authors: Major ZZ,Vaida C,Major KA,Tucan P,Simori G,Banica A,Brusturean E,Burz A,Craciunas R,Ulinici I,Carbone G,Gherman B,Birlescu I,Pisla D

    更新日期:2020-09-09 00:00:00

  • A Systematic Review of Access to General Healthcare Services for People with Disabilities in Low and Middle Income Countries.

    abstract::Background: A systematic review was undertaken to explore access to general healthcare services for people with disabilities in low and middle-income countries (LMICs). Methods: Six electronic databases were searched in February 2017. Studies comparing access to general healthcare services by people with disabilities ...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph15091879

    authors: Bright T,Kuper H

    更新日期:2018-08-30 00:00:00

  • An Integrated Approach to Determining Rural Tourist Satisfaction Factors Using the IPA and Conjoint Analysis.

    abstract::Rural tourists satisfaction has a pivotal role in the development of sustainable rural tourism. As a method of identifying critical satisfaction factors, an importance and performance analysis (IPA) technique has attracted growing interest from academics due to it being able to deliver the importance and performance o...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph16203848

    authors: Jin Y,Park Y

    更新日期:2019-10-11 00:00:00

  • The Relationship between Daily Concentration of Fine Particulate Matter in Ambient Air and Exacerbation of Respiratory Diseases in Silesian Agglomeration, Poland.

    abstract::The relationship between the worsening of air quality during the colder season of the year and respiratory health problems among the exposed population in many countries located in cold climates has been well documented in numerous studies. Silesian Voivodeship, a region located in southern Poland, is one of the most ...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph16071131

    authors: Kowalska M,Skrzypek M,Kowalski M,Cyrys J,Ewa N,Czech E

    更新日期:2019-03-29 00:00:00

  • Identification of Barriers to Stroke Awareness and Risk Factor Management Unique to Hispanics.

    abstract::Barriers to risk factor control may differ by race/ethnicity. The goal of this study was to identify barriers to stroke awareness and risk factor management unique to Hispanics as compared to non-Hispanic whites (NHWs). We performed a prospective study of stroke patients from an academic Stroke Center in Arizona and s...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph13010023

    authors: Martinez M,Prabhakar N,Drake K,Coull B,Chong J,Ritter L,Kidwell C

    更新日期:2015-12-22 00:00:00

  • Factors Influencing Weight Loss Practices in Italian Boxers: A Cluster Analysis.

    abstract::It is common practice in combat sports that athletes rapidly lose body weight before a match, by applying different practices-some safer and others possibly dangerous. The factors behind the choice of practices utilised have not been fully studied. This study aimed to investigate the weight loss strategies used by Ita...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph17238727

    authors: Amatori S,Barley OR,Gobbi E,Vergoni D,Carraro A,Baldari C,Guidetti L,Rocchi MBL,Perroni F,Sisti D

    更新日期:2020-11-24 00:00:00

  • Patterns of Signs That Telephone Crisis Support Workers Associate with Suicide Risk in Telephone Crisis Line Callers.

    abstract::Signs of suicide are commonly used in suicide intervention training to assist the identification of those at imminent risk for suicide. Signs of suicide may be particularly important to telephone crisis-line workers (TCWs), who have little background information to identify the presence of suicidality if the caller is...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph15020235

    authors: Hunt T,Wilson C,Caputi P,Wilson I,Woodward A

    更新日期:2018-01-30 00:00:00

  • Barriers and Willingness to Accept Re-Employment among Unemployed Senior Workers: The SeniorWorkingLife Study.

    abstract::Labor market participation has a positive impact on social inclusion and is linked to financial security. This study identifies barriers and willingness to accept re-employment among unemployed seniors that could highlight opportunities for societal action. From the first wave of SeniorWorkingLife in 2018 combined wit...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph17155358

    authors: Thomassen K,Sundstrup E,Skovlund SV,Andersen LL

    更新日期:2020-07-25 00:00:00

  • Menopausal Age and Chronic Diseases in Elderly Women: A Cross-Sectional Study in Northeast China.

    abstract::Many factors affect menopausal age, and early or late onset of menopause may be associated with many chronic health problems. However, limited data are available regarding this phenomenon in the Northeast China population. For this study, 2011 elderly women were selected as a sample from participants in a cross-sectio...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph13100936

    authors: Fu Y,Yu Y,Wang S,Kanu JS,You Y,Liu Y,Zhang Y,Liu Y,Li B,Tao Y,Kou C

    更新日期:2016-09-22 00:00:00

  • Personal and Lifestyle Determinants of HIV Transmission Risk in Spanish University Students.

    abstract::The increase in human immunodeficiency virus (HIV) transmission cases poses a serious public health concern. Although several previous studies have been conducted with the aim of identifying the risk factors for HIV transmission, the number of cases has been increasing, especially in youth. The present study is aimed ...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph17228332

    authors: Alcocer-Bruno C,Ferrer-Cascales R,Ruiz-Robledillo N,Sánchez-SanSegundo M,Zaragoza-Martí A

    更新日期:2020-11-11 00:00:00

  • Accuracy of Implant Casts Generated with Conventional and Digital Impressions-An In Vitro Study.

    abstract:PURPOSE:The aim of this study was to compare the accuracy of digital dental impressions with the accuracy of impressions obtained via conventional techniques. METHODS:Two different master models were created, one with parallel implants (model 1) and the other with non-parallel implants (model 2). These reference maste...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph15081599

    authors: Ribeiro P,Herrero-Climent M,Díaz-Castro C,Ríos-Santos JV,Padrós R,Mur JG,Falcão C

    更新日期:2018-07-27 00:00:00

  • Monetary Valuation of PM10-Related Health Risks in Beijing China: The Necessity for PM10 Pollution Indemnity.

    abstract::Severe health risks caused by PM10 (particulate matter with an aerodynamic diameter ≤10 μm) pollution have induced inevitable economic losses and have rendered pressure on the sustainable development of society as a whole. In China, with the "Polluters Pay Principle", polluters should pay for the pollution they have c...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph120809967

    authors: Yin H,Xu L,Cai Y

    更新日期:2015-08-21 00:00:00

  • Role of Parenting Styles in Adolescent Substance Use Cessation: Results from a Brazilian Prospective Study.

    abstract:BACKGROUND:This study aims to identify the association between parenting styles and behavioral changes among adolescents regarding the consumption of alcohol, tobacco, cannabis, cocaine/crack. METHODS:A group of ninety-nine adolescents (39 girls and 60 boys), aged 14 to 19 years (17.05 ± 1.51), who called in to a call...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph16183432

    authors: Benchaya MC,Moreira TC,Constant HMRM,Pereira NM,Freese L,Ferigolo M,Barros HMT

    更新日期:2019-09-16 00:00:00

  • Dental Challenges and the Needs of the Population during the Covid-19 Pandemic Period. Real-Time Surveillance Using Google Trends.

    abstract:BACKGROUND:The outbreak of the COVID-19 pandemic may lead to changes in the dental needs of the population and new challenges concerning oral health care. METHODS:The Google Trends tool was used to collect data on the Internet search interest. The investigated material was collected from 1 January 2020 to 23 August 20...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph17238999

    authors: Sycinska-Dziarnowska M,Paradowska-Stankiewicz I

    更新日期:2020-12-03 00:00:00

  • Designing Electric Field Responsive Ultrafiltration Membranes by Controlled Grafting of Poly (Ionic Liquid) Brush.

    abstract::Electric responsive membranes have been prepared by controlled surface grafting of poly (ionic liquid) (PIL) on the commercially available regenerated cellulose ultrafiltration membrane. The incorporation of imidazolium ring on membrane surface was evidenced by FTIR (Fourier transformed infra-red) and EDX (energy-disp...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph17010271

    authors: Tripathi T,Kamaz M,Wickramasinghe SR,Sengupta A

    更新日期:2019-12-30 00:00:00

  • Arsenic Concentration in the Surface Water of a Former Mining Area: The La Junta Creek, Baja California Sur, Mexico.

    abstract::The mining activity in the San Antonio-El Triunfo district, located in a mountainous region at 60 km southeast of La Paz, occured for more than 250 years and left behind severe contamination of soils and riverbed sediments which led to elevated concentrations of arsenic and other trace elements in the surface- and gro...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph15030437

    authors: Wurl J,Lamadrid MI,Mendez-Rodriguez L,Vargas BA

    更新日期:2018-03-02 00:00:00

  • The Urban-Rural Disparity in the Status and Risk Factors of Health Literacy: A Cross-Sectional Survey in Central China.

    abstract::Health literacy is the ability of individuals to access, process, and understand health information to make decisions regarding treatment and their health on the whole; it is critical to maintain and improve public health. However, the health literacy of urban and rural populations in China has been little known. Thus...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph17113848

    authors: Wang W,Zhang Y,Lin B,Mei Y,Ping Z,Zhang Z

    更新日期:2020-05-29 00:00:00

  • Resilience to the health risks of extreme weather events in a changing climate in the United States.

    abstract::Current public health strategies, policies, and measures are being modified to enhance current health protection to climate-sensitive health outcomes. These modifications are critical to decrease vulnerability to climate variability, but do not necessarily increase resilience to future (and different) weather patterns...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph8124582

    authors: Ebi KL

    更新日期:2011-12-01 00:00:00

  • Evaluating Short-Term Musculoskeletal Pain Changes in Desk-Based Workers Receiving a Workplace Sitting-Reduction Intervention.

    abstract::This paper explores changes in musculoskeletal pain among desk-based workers over three months of a workplace-delivered, sitting-reduction intervention. Participants (n = 153, 46% female; mean ± SD aged 38.9 ± 8.0 years) were cluster-randomized (n = 18 work teams) to receive an organizational change intervention, with...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章,随机对照试验

    doi:10.3390/ijerph15091975

    authors: Brakenridge CL,Chong YY,Winkler EAH,Hadgraft NT,Fjeldsoe BS,Johnston V,Straker LM,Healy GN,Clark BK

    更新日期:2018-09-10 00:00:00

  • Ecological and Health Effects of Lubricant Oils Emitted into the Environment.

    abstract::Lubricating oils used in machines with an open cutting system, such as a saw or harvester, are applied in forest areas, gardening, in the household, and in urban greenery. During the operation of the device with an open cutting system, the lubricating oil is emitted into the environment. Therefore, the use of an oil b...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章,评审

    doi:10.3390/ijerph16163002

    authors: Nowak P,Kucharska K,Kamiński M

    更新日期:2019-08-20 00:00:00

  • Knowledge, Attitude, and Practices of Healthcare Professionals on COVID-19 and Risk Assessment to Prevent the Epidemic Spread: A Multicenter Cross-Sectional Study from Punjab, Pakistan.

    abstract::In the current outbreak of novel coronavirus (COVID-19), healthcare professionals (HCPs) have a primary role in combating the epidemic threat. HCPs are at high risk of not only contracting the infection but also spreading it unknowingly. It is of utmost importance to evaluate their knowledge, attitudes, and practices ...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章,多中心研究

    doi:10.3390/ijerph17176395

    authors: Malik UR,Atif N,Hashmi FK,Saleem F,Saeed H,Islam M,Jiang M,Zhao M,Yang C,Fang Y

    更新日期:2020-09-02 00:00:00

  • Community Perceptions of a Multilevel Sanitation Behavior Change Intervention in Rural Odisha, India.

    abstract::While latrine coverage is increasing in India, not all household members use their latrines. Cost-effective, culturally appropriate, and theory-informed behavior change interventions are necessary to encourage sustained latrine use by all household members. We qualitatively examined community perceptions of sanitation...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph17124472

    authors: De Shay R,Comeau DL,Sclar GD,Routray P,Caruso BA

    更新日期:2020-06-22 00:00:00

  • Assessment of Knowledge of Critical Cardiovascular Risk Indicators among College Students: Does Stage of Education Matter?

    abstract::The health risk of college students in the United States (US) is on the rise, with a significant increase in the prevalence of cardiovascular risk factors. Cardiovascular disease is the leading cause of death in the US, costing approximately $475.3 billion yearly. The goals of this "Know Your Numbers" study were to: (...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph14030250

    authors: Sarpong DF,Curry IY,Williams M

    更新日期:2017-03-02 00:00:00

  • Gamified M-Health Attention Bias Modification Intervention for Individuals with Opioid Use Disorder: Protocol for a Pilot Randomised Study.

    abstract::Introduction: Globally, there is an epidemic of opioid use disorders. Locally, in Singapore, there is an increase in the number of individuals abusing opioids. The advances in experimental psychology have highlighted the need to modify unconscious, automatic biases. These automatic, unconscious biases result in indivi...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章,随机对照试验

    doi:10.3390/ijerph17030752

    authors: Zhang MWB,Heng S,Amron SB,Mahreen Z,Song G,Fung DSS,Smith HE

    更新日期:2020-01-24 00:00:00

  • Association between Knowledge of Zika Transmission and Preventative Measures among Latinas of Childbearing Age in Farm-Working Communities in South Florida.

    abstract::Zika infection, an otherwise usually mild disease, is of serious public health concern due to the potential teratogenic effects of the virus. The incidence of Zika infection is difficult to document since it is mostly asymptomatic and detection of those carrying Zika is usually not possible. Currently, there is no vac...

    journal_title:International journal of environmental research and public health

    pub_type: 杂志文章

    doi:10.3390/ijerph16071257

    authors: Patel N,Anees M,Kola R,Acuña J,Rodriguez de la Vega P,Castro G,Ruiz JG,Rojas P

    更新日期:2019-04-09 00:00:00