Table 2 Demographic details of the participants

Female (n, %)

6 (67%)

Age in years (mean, range)

52 (40 to 68)

Married or living with partner (n, %)

6 (67%)

Number of children (mean, range)

2.1 (0 to 6)

Health care use (n, %)

 Outpatient clinic

5 (56%)

 Day care and outpatient clinic

3 (33%)

 Assisted living facility and outpatient clinic

1 (11%)

Familiar with HD before they were diagnosed (n, %)

6 (67%)

 Chose to undergo predictive genetic testing (n, %)

4 (44%)

 Time since predictive genetic testing (according to patient) in years (mean, range)

14 (10 to 25)

Diagnosed with HD (according to patient) (n, %)*

8 (89%)

 Time since diagnosis (according to patient) in years (mean, range)

6.8 (0.2 to 15)

Number of interviews (total, range)

35 (1 to 6)

Duration in minutes (mean, range)

52 (16 to 82)

Euthanasia (in first interview)

 Drawn up an AED

6 (67%)

 Thinking about drawing up an AED

3 (33%)