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Table 3 Standardized Factor Loadings (λ) and Uniqueness (δ) of CFA and ESEM models for the validation sample for the questionnaire with 24 items (items have been translated in English for a better understanding of this table)

From: Development and validation of a quality of life measurement scale specific to hereditary hemorrhagic telangiectasia: the QoL-HHT

 

Confirmatory factor analysis

Exploratory structural equation modelling

Items a

λ

δ

PL (λ)

SR (λ)

CAB (λ)

RMP (λ)

ES (λ)

ED (λ)

δ

Factor 1: physical limitations (PL)

1. I feel like I'm running in slow motiona

0.79

0.38

0.77

− 0.02

0.16

− 0.17

− 0.07

0.12

0.33

6. Hereditary Hemorrhagic Telangiectasia disease limits my movements (walking, mobility…)

0.78

0.39

0.70

0.09

0.22

0.12

− 0.25

0.06

0.37

12. Because of the disease, I am limited in my intense physical activities (running, heavy lifting, sports, etc.)

0.78

0.39

0.71

0.09

0.26

0.05

− 0.22

− 0.04

0.37

17. I am often physically tired

0.76

0.43

0.80

− 0.06

0.09

− .12

0.02

0.22

0.29

Factor 2: social relationships (SR)

2. Being able to talk about the disease with my family helps me cope better

0.58

0.67

− 0.09

0.58

0.06

0.11

− 0.08

0.07

0.64

7. I can cope better with the disease thanks to the support of my friends

0.55

0.70

0.05

0.49

0.07

0.27

− 0.02

− 0.02

0.68

13. The fact that my family understands what I need improves my daily life

0.83

0.31

0.04

0.75

0.07

0.25

0.10

0.09

0.34

18. The fact that my family understands what I am going through makes my life better

0.81

0.34

0.06

0.83

0.07

0.14

0.07

0.03

0.28

Factor 3: concern about bleeding (CAB)

3. I am bothered by the sudden and unpredictable nature of the bleeding

0.63

0.60

0.20

0.03

0.54

0.01

− 0.13

0.22

0.60

8. The frequency, duration and/or intensity of bleeding is very disturbing to me

0.60

0.64

0.37

− 0.03

0.50

0.01

− 0.21

0.12

0.56

14. I am often apprehensive about bleeding in public

0.92

0.16

0.17

0.14

0.85

− 0.06

− 0.18

0.13

0.19

19. I am very embarrassed to bleed in public

0.94

0.12

0.10

0.06

0.94

− 0.04

− 0.12

0.19

0.05

Factor 4: Relationship with the medical profession (RMP)

4. Thanks to the medical advice offered to me, my quality of life is preserved

0.74

0.46

− 0.14

0.30

− 0.05

0.63

0.17

0.07

0.47

9. Thanks to medical recommendations, I can limit the impact of symptoms on my daily life

0.74

0.45

− 0.01

0.17

− 0.06

0.81

0.08

− 0.01

0.31

20. The quality of the relationships I have with the caregivers allows me to be serene

0.58

0.67

0.02

0.17

− 0.04

0.45

0.28

− 0.02

v.68

24. Thanks to the information given by the caregivers I can learn about the disease and get involved in the care

0.61

0.63

− 0.05

0.18

0.03

0.54

0.13

0.06

0.66

Factor 5: experience of symptoms (ES)

10. The symptoms of the disease do not bother me too much because I have learned to manage them

0.60

0.64

− 0.18

0.03

− 0.18

0.24

0.45

− 0.18

0.64

15. Hereditary Hemorrhagic Telangiectasia disease seems so familiar to me that I don't feel like I'm sick

0.79

0.37

− 0.22

0.04

− 0.18

0.14

0.69

− 0.20

0.38

21. I don't feel embarrassed by the disease because I feel like I have always lived with it

0.82

0.33

− 0.10

0.05

− 0.21

0.16

0.75

− 0.19

0.32

23. Even though I often have nosebleeds, I don't pay much attention to it because it has become a habit

0.64

0.59

− 0.10

0.00

− 0.13

0.07

0.64

− 0.07

0.56

Factor 6: Evolution of the disease (ED)

5. I fear that the disease will worsen with age

0.69

0.52

0.18

− 0.04

0.24

0.00

− 0.20

0.59

0.52

11. I am concerned about the health of other family members who have Hereditary Hemorrhagic Telangiectasia disease

0.48

0.77

− 0.01

0.18

0.15

0.03

− 0.19

0.43

0.73

16. I worry about my health when I see others around me who have Hereditary Hemorrhagic Telangiectasia disease

0.57

0.68

0.06

0.18

0.18

0.05

− 0.13

0.53

0.63

22. I am concerned about the evolution of the disease in the future

0.78

0.39

0.22

− 0.04

0.24

0.02

− 0.19

0.68

0.40

  1. Boldface indicates representative factor loadings (p < .05)
  2. CFA Confirmatory factor analysis; ESEM Exploratory structural equation modeling
  3. a English version of the items is provided for informational purposes and has not been subject to validation