Table 2.

Psychological burdens and number of mentions (total and by diagnostic group)

Psychological burden	NF1	PSC	PAH	MFS	Total N
Aspects related to specific diagnoses
Rumination		3			3
Avolition		2			2
Suicidal thoughts				2	2
Using disease as excuse for other problems	2				2
Shared aspects named by two diagnostic groups
Worries/anxiety		8		3	11
Shame	3			2	5
Problems with the patient role		1		3	4
Loss of control			1	1	2
Shared aspects named by three diagnostic groups
Self-doubts, feelings of insufficiency	1	1		5	7
Cognitive impairments	3	1	2		6
Diagnosis perceived as life-changing experience		1	2	2	5
Loss of quality of life	1	1	1		3
Shared aspects named by all four diagnostic groups
Depressive mood	1	2	1	8	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.