In 2003 we carried out a survey among 900 people suffering from rare disorders. It investigated the scope of health care offered to patients with disorders and their overall satisfaction with their course of treatment.
Specialised hospital treatment
Specialised treatment outside hospitals
DiagnosticsAccording to the survey, 47%[1] of the people suffering from rare diseases have waited more than one year to be diagnosed.
Figure 1: Indicate the period of time passed between discovering the first sign of illness till you were given a diagnosis:
(N= 521) Less than 30 days 1-12 Months More than a year Total 28% 25% 47% 100%
Figure 2 shows the time of diagnostics for children with rare disorders born after 1990. It is worth noting, however, that 1/3 still wait more than a year to be diagnosed.
Figure 2: Indicate the period of time passed between discovering the first sign of illness till you were given a diagnosis:
|
(N=180) |
Less than 30 days |
1-12 Months |
More than a year |
Total |
|
Children with rare disorders born after 1990 |
36% |
30% |
34% |
100% |
Specialised hospital treatment
The Danish health care system is highly decentralised. The 15 regional counties are economically responsible for hospitals and primary care, although certain highly specialised treatments and functions are assigned to the larger university hospitals.
In the late 90s two specialised treatment centres for rare disorders were established in Denmark – one at the university hospital in Copenhagen and one at the university hospital in Aarhus, in the western part of the country. However, as the KMS survey reveals county hospitals are still reluctant to refer patients with rare diseases to the centres.
Figure 3: Have you been in contact with one of the national treatment centres for rare disorders within the last 24 months? Yes No Total
(N=639)
Contact with national treatment centre
33%
67%
100%
As the figure reveals, only one third of the “rare” patients are in contact with one of the two centres. This is due to many factors: Among others, little awareness of rare disorders and the many levels of referral in the Danish health care system.
Specialised treatment outside hospitals
People with rare disorders are frequent users of specialist care. The survey shows that 79% of people with rare disorders see physiotherapists, dental surgeons, audiologists or special practitioners each year. Actually, 43% see these specialists more than five times a year.
Figure 4: How often have you been in contact with specialists outside the hospitals (that is physiotherapists, dental surgeons, audiologists or special practitioners) within the last 12months?
|
|
More than 5 times |
1-5 times |
No contact |
Total |
|
Specialists outside the hospitals |
|
|
|
|
People suffering from rare disorders generally see many different health care professionals at many different levels of the health care system. As a consequence, many experience a lack of coordination in their treatment.
Figure 5: Indicate to what degree you experience that your treatment is being coordinated?
Low degree/no coordination High/certain degree of coordination Total
(N=639)
43%
57%
100%
However, some groups experience more coherence and satisfaction in their treatment than others.
The survey shows for example that the sense of coherence increases for patients treated at one of the two national treatment centres for rare disorders. All in all, being in contact with one of the national treatment centres improves patient satisfaction.
Figure 6: Is it your impression that you get a better treatment now (at the national treatment centre) than you did before you were referred to the centre?
(N=206)
Yes
No
I don´t know
Total
43%
10%
18%
100%
Moreover, patients with rare disorders are generally more satisfied with their treatment if an individual action plan has been sketched out for them.
The survey shows that 91% of those who are given an individual action plan experience a well-coordinated course of treatment (see Figure 7).
Figure 7: Indicate to what degree you experience that your treatment is being coordinated?
|
|
High/certain degree of coordination |
|
Total |
|
Patients with an individual action plan |
|
|
|
|
Patients without an individual action plan |
|
|
|
Unfortunately, only 27% of people with rare disorders know for sure that an individual action plan has been sketched out for them.
[1] Excluded from this survey are four groups of patients: Patients with Apert syndrome, congenital Bladderectopia, dysmelia and patients without a diagnosis.