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Protocol - Disease-specific Health-related Quality of Life in Hemophilia

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Description:

The Haem-A-QoL is a 46-item, self-administered questionnaire with 10 domains that measure physical health, feelings, view of self, sport and leisure, work and school, dealing with hemophilia, treatment, future, family planning, and relationship and sexuality.

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).

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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Protocol Name from Source:

Haem-A-QoL©

Availability:

Publicly available

Personnel and Training Required

None

Equipment Needs
None
Requirements
Requirement CategoryRequired
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

Life Stage:

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, Italian

Standards
StandardNameIDSource
Common Data Elements (CDE) Hemophilia Adult Quality of Life Questionnaire assessment score 6706617 CDE Browser
Derived Variables

None

Process and Review

Not applicable.

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 NameVariable IDVariable DescriptionVersiondbGaP Mapping
PX910701000000 Protocol 910701 - proprietary. Check DCW for more
contact. show less
N/A
Hemophilia Inhibitor Research
Measure Name:

Disease-specific Health-related Quality of Life in Hemophilia

Release Date:

May 7, 2019

Definition

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.

Purpose

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.

Keywords

Quality of life, hemophilia, haemophilia, Haem-A-QoL©