Table 1.

Description of study variables

	Variable	Definition/Question
Background and clinical variables	Age	Age at January 1st of 1988, 2001 and 2012
	Number of bleeding episodes treated with factor	1988: 5 response categories 2001–2012: # of episodes
	Yearly factor usea	Units per year
	Severity of hemophiliab	Moderate; Severe
	Inhibitor (ever)a	Never; Current or previous
	Hepatitis B or C (ever)a	Never; Current or previous
	HIV Infectiona	Yes; No
	Joint mobility	Questions on range of motion in periods with no bleeds in the following joints: hips, knees, ancles, shoulders, and elbows
Social function	Education	Highest education completed
	Work	Questions on current employment, work hours and social benefits.
	Family type	Living with spouse or partner; Living alone; Other family type (e.g. living with parents or house sharing)
	Social activities	“Do you attend meeting, clubs, or other activities outside work or school, including sports, evening school or the like?”
Well-being	Life satisfaction	“All in all, how satisfied or dissatisfied are you with your life as it stands today?”
	Psychosomatic symptoms	cHeadache; cAnxiety, nervousness, unrest; cDepressed, in low spirit, unhappy; cTiredness.
	Worries	“Patients with hemophilia have a certain risk of developing life-threatening bleeds. Do you ever think about that?”
	Being alone	“Are you ever alone, but want to be together with other people?”
Stigma	Stigma	“How often have you felt like people look down upon you, avoid you or in any way react negatively about your HIV positive status?”
	Openness	“Who knows that you are HIV positive?”

^a1988 and 2012: Self-reported, 2001: Extracted from charts

^b1988: not recorded, 2001: Extracted from charts, 2012: Self-reported

^c “Have you, within the last 2 weeks, been bothered with following pain or discomforts.”