Table 5.
Interpersonal problems | NF1 | PSC | PAH | MFS | Total N |
Shared aspects named by two diagnostic groups | |||||
Burden for close others | 1 | 6 | 7 | ||
Problems setting boundaries | 2 | 4 | 6 | ||
Shared aspects named by three diagnostic groups | |||||
Stigmatisation/discrimination | 13 | 1 | 2 | 16 | |
Lack of social/emotional/psychological support | 1 | 3 | 4 | 8 | |
The way others deal with the disease is perceived as counterproductive | 1 | 4 | 3 | 8 | |
Illness is invisible for others | 1 | 1 | 1 | 3 | |
Shared aspects named by all four diagnostic groups | |||||
Others lack understanding of the disease | 6 | 5 | 5 | 6 | 22 |
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.