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Table 1 Description of study variables

From: “Development in well-being and social function among Danish hemophilia patients with HIV: a three-wave panel study spanning 24 years”

 VariableDefinition/Question
Background and clinical variablesAgeAge at January 1st of 1988, 2001 and 2012
Number of bleeding episodes treated with factor1988: 5 response categories
2001–2012: # of episodes
Yearly factor useaUnits per year
Severity of hemophiliabModerate; Severe
Inhibitor (ever)aNever; Current or previous
Hepatitis B or C (ever)aNever; Current or previous
HIV InfectionaYes; No
Joint mobilityQuestions on range of motion in periods with no bleeds in the following joints: hips, knees, ancles, shoulders, and elbows
Social functionEducationHighest education completed
WorkQuestions on current employment, work hours and social benefits.
Family typeLiving 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-beingLife satisfaction“All in all, how satisfied or dissatisfied are you with your life as it stands today?”
Psychosomatic symptomscHeadache; 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?”
StigmaStigma“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?”
  1. a1988 and 2012: Self-reported, 2001: Extracted from charts
  2. b1988: not recorded, 2001: Extracted from charts, 2012: Self-reported
  3. c “Have you, within the last 2 weeks, been bothered with following pain or discomforts.”