General knowledge and opinion of future health care and non-health care professionals on rare diseases

  1. Ramalle-Gõmara, E. 1
  2. Ruiz, E. 1
  3. Quiñones, C. 1
  4. Andrés, S. 2
  5. Iruzubieta, J. 2
  6. Gil-De-Gõmez, J. 3
  1. 1 Department of Epidemiology (SpainRDR Project), La Rioja Regional Authority, Direcciõn General de Salud Pública y Consumo, Calle Vara de Rey 8, 1a Planta, Logroño-La-Rioja, Spain
  2. 2 Universidad de La Rioja
    info

    Universidad de La Rioja

    Logroño, España

    ROR https://ror.org/0553yr311

  3. 3 Teaching Unit, Healthcare System of la Rioja, La-Rioja-Logroño, Spain
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Revista:
Journal of Evaluation in Clinical Practice

ISSN: 1356-1294

Any de publicació: 2015

Volum: 21

Número: 2

Pàgines: 198

Tipus: Article

DOI: 10.1111/JEP.12281 SCOPUS: 2-s2.0-84925455501 WoS: WOS:000351871200004 GOOGLE SCHOLAR

Altres publicacions en: Journal of Evaluation in Clinical Practice

Resum

Rationale, aims and objectivesThe debate about whether to dedicate funds to rare diseases (RD) may hinge on the existence of a societal preference for prioritizing rarity. There are scarce studies about the interest of doctors and general society in RD.MethodFour groups of future health and non-health professionals were surveyed in a region of Spain to evaluate their opinion on RD. Questions of the study were organized into four groups: general knowledge on RD, prioritization of research of RD, willingness to assign resources to RD and real distribution of resources to RD.ResultsA total of 234 students were surveyed. The mean age of the whole study population was 24.0 years and the 83.3% were female. Only around 25% of the survey sample knew the definitions of RD and orphan drugs. Questions related to willingness to assign resources to RD did not reveal statistically significant differences between study groups. Seventy-three per cent considered that the majority of the budget should be used to treat common diseases. However, resident doctors recognized that they have neither experience nor time to diagnose and treat RD.ConclusionAlthough resident doctors have a little more general knowledge on RD than other surveyed groups, health and non-health future professionals have a low general knowledge on this topic and none of them prioritized the assignment of funds to RD.