Protocol - Disease-specific Health-related Quality of Life in Hemophilia
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).
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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Protocol Name from Source:
Personnel and Training Required
|Specialized requirements for biospecimen collection||No|
|Average time of greater than 15 minutes in an unaffected individual||No|
Mode of Administration
Adults, ages 18 and older
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.
|Common Data Elements (CDE)||Hemophilia Adult Quality of Life Questionnaire assessment score||6706617||CDE Browser|
Process and Review
The Expert Review Panel has not reviewed this measure yet.
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.
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.
|Variable Name||Variable ID||Variable Description||Version||dbGaP Mapping|
Disease-specific Health-related Quality of Life in Hemophilia
May 7, 2019
Repeated bleeding episodes have a negative impact on those suffering from hemophilia that goes beyond the direct effects on joint health. Health-related quality of life measures characterize multiple health-related domains to provide an overall picture of the impact of disease on an individual’s life.
Health-related quality of life is an important and relevant health outcome measure in hemophilia research. Health-related quality-of-life assessments can be used to determine how different life aspects are affected by hemophilia and can help guide future decision-making. Additionally, this measure may be useful for evaluating the effectiveness of a specific hemophilia treatment. In some cases, the measure is also able to detect changes in clinical status related to treatment and measure change over time.
Quality of life, hemophilia, haemophilia, Haem-A-QoL©