Table 3.
Problems related to the healthcare system | NF1 | PSC | PAH | MFS | Total N |
Shared aspects named by three diagnostic groups | |||||
Problems with payers/denial of cost assumption/resistance of the pension office | 6 | 1 | 5 | 12 | |
Burden because of doctor appointments/treatments | 3 | 5 | 8 | ||
Financial burden because of additional expenditure | 1 | 3 | 2 | 6 | |
Shared aspects named by all four diagnostic groups | |||||
Dissatisfaction with the professional competence of caregivers | 11 | 6 | 6 | 4 | 27 |
Dissatisfaction with the patient–physician interaction | 7 | 4 | 2 | 8 | 21 |
Limited access to adequate treatment | 8 | 7 | 3 | 2 | 20 |
Patient feels insufficiently informed | 1 | 5 | 3 | 3 | 12 |
Numbers represent the total number of mentions and are displayed for each diagnosis individually as well as across all diagnostic groups; grey cells represent categories, which were mentioned at least once in a diagnostic group.
MFS, Marfan syndrome; NF1, neurofibromatosis type 1; PAH, pulmonary arterial hypertension; PSC, primary sclerosing cholangitis.