Protocol - Disease-specific Health-related Quality of Life in Hemophilia
- Activities of Daily Living (ADLs)
- Physical, Social, and Mental Health Functioning (SF-36V2)
- Quality of Life - Adult
- Quality of Life - Pediatric
- Quality of Life Enjoyment and Satisfaction - Adult
- Quality of Life Enjoyment and Satisfaction - Children
Description
The Haem-A-QoL
Specific Instructions
In comparison to generic (non-disease specific) health-related quality of life (HRQoL) measures, the Haem-A-QoL© may be more relevant when a more specific assessment of HRQoL issues related to hemophilia is required. A disease-specific measure may in some cases have increased ability to demonstrate differences between groups of patients with hemophilia (e.g., those on prophylactic factor infusions vs. those not on prophylactic infusions) compared to a generic measure. The PROMIS Profile 29 or EQ-5D-5L may be useful when assessment of generic HRQoL is appropriate (e.g., for those with less severe symptoms and when comparing to non-hemophilia populations).
Availability
This protocol has limited availability; permission required for use.
Protocol
Summary of the Haem-A-QoL
The Haem-A-QoL© is a 46-item self-administered questionnaire with 10 domains that measure physical health (5 items), feelings (4 items), view of self (5 items), sport and leisure (5 items), work and school (4 items), dealing with hemophilia (3 items), treatment (8 items), future (5 items), family planning (4 items), and relationship and sexuality (3 items).
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Personnel and Training Required
None
Equipment Needs
NoneRequirements
| Requirement Category | Required |
|---|---|
| Major equipment | No |
| Specialized training | No |
| Specialized requirements for biospecimen collection | No |
| Average time of greater than 15 minutes in an unaffected individual | No |
Mode of Administration
Self-administered questionnaire
Lifestage
Adult
Participants
Adults, ages 18 and older
Selection Rationale
The Haem-A-QoL© is an extensively tested and well-established self-administered protocol that is easy to administer, score, and interpret. It has been used world-wide in clinical trials and other research.
Language
English, Other languages available at source
Standards
| Standard | Name | ID | Source |
|---|
Derived Variables
None
Process and Review
Not applicable.
Protocol Name from Source
Haem-A-QoL
Source
Von Mackensen, S., Scalone, L., Ravera, S., Mantovani, L. G., & Gringeri, A. (2005). Assessment of health-related quality of life in patients with haemophilia with the newly developed haemophilia-specific instrument Haem-A-QoL. Value in Health, 8(6), A127.
General References
Von Mackensen, S., Eldar-Lissai, A., Auguste, P., Krishnan, S., von Maltzahn, R., Yu, R., & Wyrwich, K. W. (2017). Measurement properties of the Haem-A-QoL in haemophilia clinical trials. Haemophilia, 23(3), 383-391.
Von Mackensen, S., & Gringeri, A. (2010). Quality of life in hemophilia. In V. R. Preedy & R. R. Watson (Eds.), Handbook of disease burdens and quality of life measures (pp. 401-408). New York, NY: Springer.
Von Mackensen, S., & Gringeri, A.; Haem-A-QoL Study Group. (2005). Health-related quality of life in adult patients with haemophilia<97>Assessment with a new disease-specific questionnaire (Haem-A-QoL). Journal of Thrombosis and Haemostasis, 3(Suppl. 1), P0813.
Protocol ID
910701
Variables
Export Variables| Variable Name | Variable ID | Variable Description | dbGaP Mapping | |
|---|---|---|---|---|
| PX910701000000 | Protocol 910701 - proprietary. Check DCW for more | N/A | ||