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. 2019 Dec 29;9(12):e033353. doi: 10.1136/bmjopen-2019-033353

Table 5.

Interpersonal problems and number of mentions (total and by diagnostic group)

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.