Concordance Between Haemo-QOL and the Hemophilia Activities List (HAL) in Assessing Hemophilia A Impact on Quality of Life
Author(s)
Lai L1, Nakagawa N2, Chiu CW3, Lu PT4, Chiou SS5
1Kaohsiung Medical University, Kaohsiung City, KHH, Taiwan, 2Ohu University, Koriyama, Japan, 3Kaohsiung Medical University, Kaohsiung, Taiwan, 4Kaohsiung Medical University Hospital, Kaohsiung, Taiwan, 5Division of Hematology and Oncology, Department of Pediatrics, Kaohsiung Medical University Hospital, Kaohsiung Medical University, KAOHSIUNG, KHH, Taiwan
Presentation Documents
OBJECTIVES: Hemophilia significantly impacts health-related quality of life (HRQoL). Two established instruments, the Haemo-QoL questionnaire and the Hemophilia Activities List (HAL), assess the impact of hemophilia on different aspects of life. However, the relationship between these instruments and their ability to capture specific domains remains unclear. This study aimed to evaluate the concordance between Haemo-QoL and HAL in assessing the impact of Hemophilia A on daily life.
METHODS: We analyzed data from a cohort of Hemophilia A patients (N=24) who completed both Haemo-QoL and HAL assessments. To assess the association between corresponding domain scores on the Haemo-QoL and HAL questionnaires, Kendall's tau-b correlation analysis was employed. Bland-Altman plots were then generated to visualize the agreement and identify any potential biases between the total scores and domain scores of these two instruments. Statistical significance was set at a p-value below 0.05.
RESULTS: The findings of our study indicate a significant relationship between the total HAL score and the total HaemoQol score. (p=0.000, tau_b= -0.502). Correlation coefficients between corresponding domains ranged from -0.294 to -0.624, with some domains showing stronger agreement than others. Bland-Altman plots and the calculated 95% limits of agreement range indicated that the findings support the moderate correlation coefficients observed between the corresponding domains of the two instruments.
CONCLUSIONS: Our results align with the moderate negative correlations found between the Haemo-QoL and HAL total scores. The concordance between Haemo-QoL and HAL varied across domains. While both instruments provide valuable information, understanding their strengths and limitations can inform clinical practice. Utilizing both assessments can offer a more comprehensive picture of a patient's experience with Hemophilia A, leading to more tailored treatment plans and improved patient management.
Conference/Value in Health Info
Value in Health, Volume 27, Issue 12, S2 (December 2024)
Code
MSR113
Topic
Clinical Outcomes, Methodological & Statistical Research, Patient-Centered Research
Topic Subcategory
Clinician Reported Outcomes, Confounding, Selection Bias Correction, Causal Inference, Instrument Development, Validation, & Translation, Patient-reported Outcomes & Quality of Life Outcomes
Disease
Rare & Orphan Diseases