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Table 3 Likert questions about training for the management and knowledge of rare diseases.(Based in Esteban Bueno et al. 2015)

From: Education and information needs for physicians about rare diseases in Spain

Questions

Hospital

(n = 37)

Mean (SD)

Primary care

(n = 132)

Mean (SD)

p-value

I consider that the medical training (clinical aspects) that I have received on rare diseases is adequate

2.29 (0.94)

1.72 (0.96)

0.001

I believe that the training I have received on the psychosocial impact of rare diseases is adequate

1.77 (0,81)

1.71 (0.93)

0.730

I consider myself qualified to coordinate the health care of a patient with a rare disease

2.40 (1.17)

1.82 (1.02)

0.002

I know the protocol of action that I must follow with a patient with a rare disease

2.19 (1.12)

1.58 (0.83)

0.002

I feel qualified to give genetic counselling to my patients with rare diseases

2.02 (1.01)

1.41 (0,74)

0.001

I know the existence of some of the registries of rare diseases existing in our country

2.33 (1.29)

2.10 (1.26)

0.305

I have enough information about the operation of rare disease registries

1.79 (0.99)

1.58 (0.84)

0.154

I know what the Reference Units for rare diseases are

2.40 (1.22)

1.97 (1.11)

0.029

I know the role of these Reference Units in the monitoring of these diseases

2.38 (1.29)

1.87 (1.07)

0.009

I know the existence of the State Reference Center for People with rare diseases and their families

2.09 (1.23)

1.87 (1.14)

0.272

I know how to refer patients to Reference Units

2.47 (1.32)

1.53 (0.77)

0.001

I know the functions performed by the State Reference Center for People with Rare Diseases and their Families

1.95 (1.07)

1.53 (0.78)

0.019

I know the global / national organizations / associations working in the field of rare disease

2.26 (1.09)

1.58 (0.85)

0.001

Overall

28.16 (10.55)

22.19 (8.77)

0.001

  1. *Significant difference p < 0.05
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Orphanet Journal of Rare Diseases

ISSN: 1750-1172