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

Table 3.

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.