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Table 1 Overview of selected PRO instruments.

From: Content comparison of haemophilia specific patient-rated outcome measures with the international classification of functioning, disability and health (ICF, ICF-CY)

Age Group

Type of Measures*

Name of questionnaire

Instrument

Dimension/subscales

N.°of Items**

Way of administration

Reliability

Validity in Haemophilia Examined

N° of languages

Use in haemophilia Research

Children

HRQoL

Haemo-QoL

Haemophilia -specific QoL Questionnaire for children patients and parents

8-12 (physical health, feeling, view of yourself, family, friends, perceived support, others, sports and school, dealing with haemophilia, treatment, future, relationships, global health)

I: 21 for children aged 4-7 II: 64 for children aged 8-12 III: 77 for adolescents aged 13-16

Self/Proxy

α = 0.85-0.91 (for the different age group versions)

yes

40

Epidemiological study (describing the quality of life of patients with reference to other chronic conditions), Clinical trials (to evaluate the potential benefits of different treatment regimes), Quality assurance (identifying the quality of care perceived by patients, e.g., in Haemophilia Comprehensive Care Centres (HCCC), Health-economic studies (assessing costs and benefits of haemophilia treatment with regard to economic indicators) and Routine treatment

Adults

 

Haem-A-QoL

Disease-specific questionnaire for adults patients

10 (physical health, feelings, view of yourself, sport and leisure, work and school, dealing with haemophilia, treatment, future, family planning, partnership and sexuality)

46

Self

α = 0.74-0.88

yes

32

 
  

Medtap (Haemo-QoL-A)

Haemophilia-specific QoL questionnaire for adults

4 (day-to-day activities, mood and feelings, work or school life, family life -social life, haemophilia treatment)

41

Self

α = 0.75-0.95

yes

20

 
 

TS

Hemo-SatA

Haemophilia Treatment satisfaction Question- naire

6 (Ease and convenience, Efficacy Burden, Specialist/nurses, Centre/Hospital, General satisfaction with your treatment

34

Self

α = 0.71-0.95

yes

24

To evaluate patients' therapy and experience, in follow-up analysis

 

Functioning

HEP-Test Q

Subjective assessment questionnaire of the effects of physical functioning in adult with haemophilia

5 (physical status, mobility strength-coordination, endurance, body perception)

25 + 1

Self

α = 0.70-0.90

yes

3

Evaluation of patients' daily activities or functioning, Follow-up analysis, Rehabilitation Programs