PB0269 - Health-related quality of life of, and burden of caring for, Thai patients with hemophilia using the Canadian Hemophilia Outcomes–Kids’ Life Assessment Tool v3.0 and Hemophilia Family Impact Tool

Sunday, June 25, 2023

18:30 – 19:30 ET

Room: Exhibition

Presenting Author(s)

Rungrote Natesirinilkul, MD

Associate Professor
Department of Pediatrics, Faculty of Medicine, Chiang Mai University, Chiang Mai, Thailand
Chiang Mai, Chiang Mai, Thailand

Co-Author(s)

RO

Roxy H. O'Rourke, MSc, PhD(c)

Clinical Research Project Coordinator
Hospital for Sick Children
Toronto, Ontario, Canada
Nongnuch Sirachainan, MD

Prof.
Faculty of Medicine Ramathibodi hospital, Mahidol University, Bangkok, Thailand
Bangkok, Krung Thep, Thailand
Natsaruth Songthawee, MD

Instructor
Department of Pediatrics, Faculty of Medicine, Prince of Songkla University, Songkhla, Thailand
Hat Yai, Songkhla, Thailand
PK

Patcharee Komwilaisak

Associate Professor
Faculty of Medicine, Khon Kaen University
Khon Kaen, Khon Kaen, Thailand
KF

Kanda Fanhchaksai

Research Assistant
Faculty of Medicine, Chiang Mai University
Chiang Mai, Chiang Mai, Thailand
SD

Saunya Dover

Research Manager
Children's Hospital of Eastern Ontario
Ottawa, Ontario, Canada
AA

Audrey Abad

Senior Project Manager
Hospital for Sick Children
Toronto, Ontario, Canada
VP

Victoria Price

Division Head of Pediatric Hematology/Oncology, Professor
Division Pediatric Hematology/Oncology, IWK Health; Department of Pediatrics, Dalhousie University
Halifax, Nova Scotia, Canada
NY

Nancy L. Young

Senior Scientist
Children's Hospital of Eastern Ontario
Ottawa, Ontario, Canada
VB

Victor S. Blanchette

Staff Physician
Hospital for Sick Children
Toronto, Ontario, Canada
Ampaiwan Chuansumrit

Professor
Department of Pediatrics, Faculty of Medicine Ramathibodi Hospital, Mahidol University, Bangkok, Thailand
Bangkok, Krung Thep, Thailand

Background: Low-dose prophylaxis is recommended for persons with hemophilia (PWH) in Thailand to reduce bleeding rates. Data on patient-reported outcome measures (PROMs) in PWH using this approach, are limited. The Canadian Hemophilia Outcomes-Kids Life Assessment Tool (CHO-KLAT) version 3.0 and Hemophilia Family Impact Tool (H-FIT) are hemophilia-specific PROMs that examine health-related quality of life (HRQoL) and burden of caring for PWH, respectively.

Aims: To translate the CHO-KLAT and H-FIT into Thai and examine HRQoL of, and burden of caring for, PWH ages 0-18 in Thailand.

Methods: Step 1: Forward and back translations of the CHO-KLAT and H-FIT.
Step 2: Cognitive debriefing to ensure cross-cultural equivalence of the questionnaires through 3 focus groups that each included 8 PWH and 8 caregivers.
Step 3: The CHO-KLAT and H-FIT were administered in 4 hemophilia treatment centres in Thailand, at baseline, 3, and 6-month time-points. PWH aged 7-18 completed the self-report CHO-KLAT. Caregivers of PWH < 18 years completed the parent-report CHO-KLAT and H-FIT. Spearman’s correlations were calculated to examine the relationship between child- and parent-reported CHO-KLAT and paired samples t-tests were used to examine changes in CHO-KLAT/H-FIT scores longitudinally.

Results: During cognitive debriefing, minor changes to the wording of the questionnaires were made. For Step 3, 38 caregivers and 29 PWH completed the questionnaires (see Table 1). PWH and caregiver CHO-KLAT scores were not significantly correlated at baseline (ρ=.07, CI=-.31-.44), 3-months (ρ=.18, CI=-.21-.52), or 6-months (ρ=-.13, CI=-.48-.26). There were no significant changes in CHO-KLAT/H-FIT scores over time (p’s>.05, see Figure 1).

Conclusion(s): There were inconsistencies in caregiver-perceived and child-reported HRQoL. No PWH changed treatments over the course of the study, which supports the relatively stable CHO-KLAT/H-FIT scores from baseline to 6-months. The Thai versions of the CHO-KLAT and H-FIT offer evidence-based methods for monitoring HRQoL and family burden in Thailand, long-term, especially alongside changes in standard of care.