Problems related to the healthcare system and number of mentions (total and by diagnostic group)
| 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.