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, %) | Hospital | Primary care | p-value |
|---|---|---|---|
(n = 37)a | (n = 132)a | ||
Lack of diagnostic guidelines | 26 (70.3) | 78 (59.1) | 0.211 |
Lack of access to diagnostic tests | 12 (32.4) | 44 (33.3) | 0.918 |
Delay or inability to make a definitive diagnosis | 23 (62.2) | 89 (67.4) | 0.552 |
Lack of treatment or management guidelines | 21 (56.8) | 77 (58.3) | 0.864 |
Lack of available treatments | 29 (78.4) | 48 (36.4) | 0.001 |
Difficulty accessing new drugs or therapies currently available overseas, not yet licensed in Spain | 17 (45.9) | 20 (15.2) | 0.001 |
Uncertainty about where to refer patients to | 23 (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 testing | 12 (32.4) | 42 (31.8) | 0.944 |
Uncertainty about available peer support groups for the patient and family | 14 (37.8) | 59 (44.4) | 0.476 |