Skip to main content

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”




Background and clinical variables


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


Highest education completed


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?”


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.


“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?”



“How often have you felt like people look down upon you, avoid you or in any way react negatively about your HIV positive status?”


“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.”