Development of a disease-specific quality of life questionnaire for adult patients with hereditary angioedema due to C1 inhibitor deficiency (HAE-QoL): Spanish multi-centre research project

Table 7 Examples of items on HAE-QoL v 1.0 and agreement rates in expert rating phase

Item no.	Subscale	Example (*)	A (%)	B (%)	C (%)	D (%)	Final Decision
29	Physical Role	How often has the disease prevented you from doing your work or studying properly?	100%	100%	0%	100%	Maintained
52	Symptoms	Have you been affected by not knowing how severe an episode of swelling would be?	75%	87.5%	37.5%	100%	Modified/Reassigned dimension (to Mental Health)
14	Physical functioning	How often has angioedema impeded your ability to carry out planned activities?	87.5%	87.5%	12.5%	75%	Reassigned dimension to Physical Role
56	Treatment	How often have you worried about the possibility that treatment would not be available when you needed it?	87.5%	100%	0%	100%	Maintained
13	Treatment	To what extent have you felt more at ease after having begun treatment?	62.5%	100%	50%	87.5%	Removed (QC, similar to and better wording in item 62)

A: Clarity and adequate wording – item was revised if agreement rate was below 80% or by consensus in qualitative comments. B: Relevant for HAE-C1-INH - item was removed if agreement rate was below 80% C: Need for rephrasing/modifying the item- item was reworded if agreement rate was over 20%. D: Correct domain- item was moved if agreement rate was below 80%. * These examples were translated from the Spanish to English for this paper. QC: Qualitative comments.