Table 4 Descriptive statistics, reliability scores and correlations for the validation sample

QoL-HHT scores

Physical limitations (PL)

–

0.86

Social relationships (SR)

0.05

–

0.77

Concern about bleeding (CAB)

0.45***

0.12

–

0.87

Relationship with medical profession (RMP)

− 0.12

0.43***

− 0.08

–

0.76

Experience of symptoms (ES)

− 0.37***

0.08

− 0.43***

0.33***

–

0.80

Concern about the evolution of the disease (ED)

0.31***

0.14*

0.45***

0.01

− 0.39***

–

0.73

SF36 scores

Physical health score

Physical functioning

− 0.62***

− 0.08

− 0.26***

0.02

0.23***

− 0.19**

0.92

Role-physical

− 0.71***

− 0.08

− 0.34***

0.10

0.31***

− 0.28***

0.82

Bodily pain

− 0.55***

0.02

− 0.31***

0.09

0.17*

− 0.15*

0.86

General health

− 0.61***

− 0.02

− 0.34***

0.14*

0.44***

− 0.41***

0.85

Psychological health score

Social functioning

− 0.50***

− 0.05

− 0.28***

0.11

0.36***

− 0.21**

0.66

Role-emotional

− 0.52***

− 0.01

− 0.26***

0.11

0.28***

− 0.22**

0.84

Mental Health

− 0.41***

0.09

− 0.27***

0.23***

0.27***

− 0.20**

0.80

Vitality

− 0.66***

0.08

− 0.38***

0.27***

0.31***

− 0.18**

0.84

SSQ6 scores

Social availability

− 0.23***

0.18**

− 0.14*

0.11

0.08

0.01

0.88

Social satisfaction

− 0.12

0.08

− 0.03

0.16*

0.12

− 0.04

0.96

CERQ scores

Self-blame

0.04

− 0.09

0.02

− 0.14*

− 0.04

0.14*

0.70

Acceptance

0.15*

0.09

− 0.01

0.11

0.03

0.08

0.72

Rumination

0.26***

0.10

0.14*

− 0.08

− 0.18**

0.15*

0.74

Positive focus

− 0.04

0.25***

− 0.05

0.33***

0.19**

− 0.10

0.88

Focus on action

− 0.13

0.17*

0.03

0.25***

0.14*

− 0.03

0.83

Positive reappraisal

− 0.21**

0.20**

− 0.16*

0.20**

0.25***

− 0.15*

0.84

Putting it into perspective

− 0.10

0.20**

− 0.05

0.24***

0.19**

− 0.05

0.77

Dramatization

0.36***

0.05

0.17*

− 0.08

− 0.15*

0.26***

0.72

Blame others

0.09

0.03

0.01

− 0.09

0.03

0.13

0.69

HAD scores

Anxiety

0.20**

− 0.06

0.14*

− 0.25***

− 0.16*

0.13

0.70

Depression

0.55***

− 0.09

0.27***

− 0.31***

− 0.28***

0.12

0.81

Mean

2.99

3.42

3.82

3.58

3.23

3.89

Standard Deviation

1.20

0.88

1.12

0.74

1.02

0.84

ρ values

0.86

0.79

0.86

0.76

0.81

0.73