During the development of our hepatic encephalopathy (<spanclassName='bold-font'>HE</span>) project, we conducted extensive <spanclassName='bold-font'>Human Practices (HP)</span> activities to understand the challenges and gather feedback from professionals and patients. Our HP work is divided into three key areas:
<li><spanclassName='bold-font'>Questionnaire-based research</span> to identify HE symptoms and their impact on <spanclassName='bold-font'>quality of life</span>.</li>
<li><spanclassName='bold-font'>Interviews with doctors</span> and liver disease experts to explore the <spanclassName='bold-font'>limitations</span> of current treatments and potential <spanclassName='bold-font'>probiotic therapies</span>.</li>
<li><spanclassName='bold-font'>Patient and family feedback</span> to understand their expectations and concerns about new therapies.</li>
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We designed a comprehensive <spanclassName='bold-font'>questionnaire</span> covering patient <spanclassName='bold-font'>medical history</span>, <spanclassName='bold-font'>current symptoms</span>, treatment experience, and awareness of <spanclassName='bold-font'>new therapies</span> like probiotics. This allows us to collect <spanclassName='bold-font'>real-world data</span> to further our research on HE.
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The figure below shows how our HP activities integrate with <spanclassName='bold-font'>lab work</span> and <spanclassName='bold-font'>scientific exchange</span>. This collaboration helps us better understand the complexity of HE and provides a foundation for developing <spanclassName='bold-font'>probiotic-based treatments</span>. By combining patient feedback with scientific research, our goal is to improve HE treatment and enhance <spanclassName='bold-font'>patient quality of life</span>.
<spanclassName='bold-font'>Hepatic encephalopathy (HE)</span> is a neurological disorder caused by liver dysfunction, with symptoms like <spanclassName='bold-font'>cognitive impairment</span>, <spanclassName='bold-font'>emotional instability</span>, and decreased <spanclassName='bold-font'>social functioning</span>, all of which affect <spanclassName='bold-font'>quality of life</span>. Many patients have <spanclassName='bold-font'>low self-awareness</span> of their condition, delaying treatment and increasing psychological burden. Our goal is to explore why HE patients have low awareness of their symptoms and stress.
<li><spanclassName='bold-font'>Symptom awareness</span>: Participants rated their symptoms and stress on a scale from 0 (no symptoms) to 100 (severe symptoms) to measure <spanclassName='bold-font'>self-awareness</span>.</li>
<li><spanclassName='bold-font'>Clinical assessment</span>: Participants were guided through <spanclassName='bold-font'>West Haven Criteria</span> to evaluate their actual condition.</li>
<li><spanclassName='bold-font'>Coping and understanding</span>: Focused on how participants manage stress and understand their condition.</li>
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The questionnaire was distributed online to HE patients in collaboration with hospitals to ensure <spanclassName='bold-font'>diverse samples</span>.
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<h4className="center-text">4.3 Results</h4>
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We received <spanclassName='bold-font'>725 responses</span>, including <spanclassName='bold-font'>350 HE patients</span>. Only <spanclassName='bold-font'>3.5%</span> could accurately recognize the severity of their condition, with most patients underestimating their symptoms. Comparisons with <spanclassName='bold-font'>clinical assessments</span> showed that patients' self-reported symptoms were generally lower than professional evaluations. Over <spanclassName='bold-font'>65%</span> of participants had never actively assessed their condition, despite some using mobile apps. These findings highlight the need to improve <spanclassName='bold-font'>self-awareness</span> in HE patients, which is crucial for better treatment planning.