PERCEPTION AND PRACTICE OF SHARED DECISION-MAKING IN HEMOPHILIA CARE IN CHINA: RESULTS FROM A MULTICENTER SURVEY
Author(s)
liting zhang, master1, ziyan gao, master1, Yue Zhang, Master1, Karina Chin Po Hsu, Ph.D2, Danni Shi, Ph.D2, Shunping Li, DPhil1, hui li, PhD1.
1Department of Social Medicine and Health Management, School of Public Health, Shandong University, Jinan, China, 2Pfizer Investment Co. Ltd, Shanghai, China.
1Department of Social Medicine and Health Management, School of Public Health, Shandong University, Jinan, China, 2Pfizer Investment Co. Ltd, Shanghai, China.
OBJECTIVES: Shared decision-making (SDM) is increasingly recognized as a cornerstone of patient-centered hemophilia care, particularly in the context of expanding therapeutic options and evolving treatment goals. However, real-world implementation of SDM in China remains unclear. This study aimed to evaluate the current status, perceptions, experiences, and barriers to SDM among hemophilia healthcare professionals and patients, and to identify priorities for improvement.
METHODS: A cross-sectional survey was conducted among 106 healthcare professionals and 283 patients (or caregivers) across multiple regions in China. Healthcare professionals completed the 9-item Shared Decision-Making Questionnaire-Physician Version (SDM-Q-Doc), while patients completed the 9-item Shared Decision-Making Questionnaire (SDM-Q-9). Both instruments use a standardized 0-100 scoring system. Additional items assessed awareness, attitudes, use of decision-support tools, and perceived barriers.
RESULTS: Among healthcare professionals (mean age 42.6±8.9 years; mean hemophilia practice 12.2±7.4 years), 81.1% reported good understanding of SDM and 93.4% expressed willingness to implement it. The mean SDM-Q-Doc score was 91.2, with only 1.9% scoring below 60. However, regular use (>50% of consultations) of decision-support tools was limited (13.2%). Major barriers included lack of standardized decision aids, limited patient health literacy, time constraints, and workflow limitations. Among patients (mean age 26.6±13.0 years; 58.3% severe hemophilia), 85.5% were willing to participate in SDM, but only 39.6% reported good understanding of the concept. Mean SDM-Q-9 scores were 77.1 for physicians, 79.3 for rehabilitation physicians, and 67.7 for nurses.
CONCLUSIONS: Despite high self-reported engagement from healthcare professionals, significant perception and practice gaps exist between providers and patients regarding SDM implementation. Limited decision-support tools and variable patient awareness remain key challenges. Structured SDM frameworks, standardized decision aids, multidisciplinary collaboration, and targeted patient education strategies are needed to optimize implementation and improve patient-centered outcomes.
METHODS: A cross-sectional survey was conducted among 106 healthcare professionals and 283 patients (or caregivers) across multiple regions in China. Healthcare professionals completed the 9-item Shared Decision-Making Questionnaire-Physician Version (SDM-Q-Doc), while patients completed the 9-item Shared Decision-Making Questionnaire (SDM-Q-9). Both instruments use a standardized 0-100 scoring system. Additional items assessed awareness, attitudes, use of decision-support tools, and perceived barriers.
RESULTS: Among healthcare professionals (mean age 42.6±8.9 years; mean hemophilia practice 12.2±7.4 years), 81.1% reported good understanding of SDM and 93.4% expressed willingness to implement it. The mean SDM-Q-Doc score was 91.2, with only 1.9% scoring below 60. However, regular use (>50% of consultations) of decision-support tools was limited (13.2%). Major barriers included lack of standardized decision aids, limited patient health literacy, time constraints, and workflow limitations. Among patients (mean age 26.6±13.0 years; 58.3% severe hemophilia), 85.5% were willing to participate in SDM, but only 39.6% reported good understanding of the concept. Mean SDM-Q-9 scores were 77.1 for physicians, 79.3 for rehabilitation physicians, and 67.7 for nurses.
CONCLUSIONS: Despite high self-reported engagement from healthcare professionals, significant perception and practice gaps exist between providers and patients regarding SDM implementation. Limited decision-support tools and variable patient awareness remain key challenges. Structured SDM frameworks, standardized decision aids, multidisciplinary collaboration, and targeted patient education strategies are needed to optimize implementation and improve patient-centered outcomes.
Conference/Value in Health Info
2026-09, ISPOR Asia Pacific 2026, Bangkok, Thailand
Value in Health, Volume 55, Issue S1
Code
PCR8
Topic
Patient-Centered Research
Topic Subcategory
Patient Engagement
Disease
SDC: Neurological Disorders, SDC: Rare & Orphan Diseases