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Sökning: WFRF:(Gaspar de Matos M)

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  • Heard, J. M., et al. (författare)
  • 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
  • Ingår i: Orphanet Journal of Rare Diseases. - : Springer Science and Business Media LLC. - 1750-1172. ; 15:1
  • Tidskriftsartikel (refereegranskat)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.
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  • Kim, S. S., et al. (författare)
  • Bullying, Mental Health, and the Moderating Role of Supportive Adults : A Cross-National Analysis of Adolescents in 45 Countries
  • 2022
  • Ingår i: International Journal of Public Health. - : Frontiers Media S.A.. - 1661-8556 .- 1661-8564. ; 67
  • Tidskriftsartikel (refereegranskat)abstract
    • Objectives: Relationships with supportive adults during adolescence may be a protective factor that lowers the risks associated with bullying. The current study aimed to examine the moderating role of supportive adults in the associations between bullying involvement (in-person and cyber) and mental health problems (psychological symptoms and low life satisfaction). Methods: Data from 45 countries and regions taking part in the 2017/18 Health Behaviour in School-Aged Children study (N = 230,757) were used. Multivariable Poisson regression models were used to estimate relative risks of bullying on mental health. Effect estimates were compared across the number of supportive adults to examine a possible cumulative protective effect of relationships with supportive adults. Results: Bullying involvement was consistently associated with poor mental health across the 45 countries. Risk of mental health problems associated with bullying involvement was greatest among students reporting relationships with multiple supportive adults. This was true for all indicators of bullying involvement. Conclusion: Bullying remains a prevalent and harmful experience for youth worldwide. Merely having supportive adults is not sufficient in protecting youth from experiencing the mental health risks associated with bullying.
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