Table 3 Availability of medical services
From: Social and medical needs of rare metabolic patients: results from a MetabERN survey
Question and answer options | % |
|---|---|
Are there disorder-specific medical services, specialised in your disorder, available in your area? | |
 Yes | 34.9 |
 No | 61.1 |
 I do not know | 4.0 |
Are there emergency services, specialised in your disorder, in your area? | |
 Yes | 19.0 |
 No | 72.3 |
 I do not know | 8.7 |
In your country's health system, is there a particular pathway dedicated to your disorder area, in which a patient is assisted from diagnosis up to starting treatment, to follow-ups and annual tests, etc.? | |
 Yes | 66.5 |
 No | 23.0 |
 I do not know | 10.5 |
Is your metabolic consultant/specialist or a member of their team easily accessible? | |
 Yes | 69.5 |
 No | 30.5 |
Is home care necessary for the patient? | |
 Yes | 24.7 |
 No | 75.3 |
What is your level of satisfaction with medical home examinations/appointments? | |
 Satisfied | 31.6 |
 Neither satisfied nor dissatisfied | 36.2 |
 Dissatisfied | 32.2 |
What is your level of satisfaction with scheduled home visits? | |
 Satisfied | 27.7 |
 Neither satisfied nor dissatisfied | 37.8 |
 Dissatisfied | 34.5 |