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Table 2 Difficulties encountered by physicians while caring for patients with rare diseases (Based in Zurynski et al.2017)

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

Variable (N, %)HospitalPrimary carep-value
(n = 37)a(n = 132)a
Lack of diagnostic guidelines26 (70.3)78 (59.1)0.211
Lack of access to diagnostic tests12 (32.4)44 (33.3)0.918
Delay or inability to make a definitive diagnosis23 (62.2)89 (67.4)0.552
Lack of treatment or management guidelines21 (56.8)77 (58.3)0.864
Lack of available treatments29 (78.4)48 (36.4)0.001
Difficulty accessing new drugs or therapies currently available overseas, not yet licensed in Spain17 (45.9)20 (15.2)0.001
Uncertainty about where to refer patients to23 (62.2)88 (66.7)0.612
Difficulties in accessing allied health services (Physiotherapy, psychology,...)9 (24.3)41 (31.1)0.421
Difficulties in accessing genetic testing12 (32.4)42 (31.8)0.944
Uncertainty about available peer support groups for the patient and family14 (37.8)59 (44.4)0.476
  1. aSignificant difference p < 0.05