VIDEO INTERVENTION/PREVENTION ASSESSMENT-TRANSITIONS

Michael Rich，医学博士，MPJ，是一位青少年医学医生，具有特殊的临床专业知识和对慢性疾病的研究兴趣。他特别感兴趣的是调查病人的疾病经历，以发展医疗保健服务，是有效的和敏感的病人的需求。1998年，他因其创新的以患者为中心的研究方法--视频干预/预防评估（VIA）而被授予1998年青少年医学学会新研究者奖。VIA是一种定性技术，它来自于已建立的社会科学研究方法，分析患者创建的“视频日记”，记录他们与疾病和医疗保健的“真实的生活”经历，以向临床医生传授疾病和残疾，因为它存在于他们的生活、环境和哮喘的心理社会特征的背景下，而这些背景在以前是传统调查技术无法获得的。K23奖将允许Rich博士推进这一研究事业，并通过基础研究方法和分析技术的正式课程工作进一步发展VIA方法，通过在医学博士Donald Goldmann的赞助指导下整合临床有效性的定量测量，并在共同导师的指导下工作，这些导师是VIA研究领域的领先专家，包括视觉人类学、质性研究方法、定量和定性的卫生服务研究。该研究计划适用于VIA检查从儿科到成人医疗保健系统的过渡，由患有慢性，功能限制性疾病和特殊医疗保健需求的年轻人。VIA Transitions研究将重点关注骨髓增生异常/脊柱裂和镰状细胞病患者，将使用临床、定性和定量方法调查：1）在从儿科护理过渡到成人护理之前、期间和之后，患者的健康相关生活质量（HRQL）如何？2)在每个过渡阶段，患者的需求是什么？这些需求得到满足的程度如何？3)对于有复杂需求和功能限制性疾病的患者，过渡护理的经验是什么？在对研究受试者的疾病经历进行视觉叙述之前，将使用临床访谈和标准化HRQL工具对研究受试者进行评估：1）当他们接受儿科医疗系统的护理时，2）当他们离开儿科并开始在成人医疗系统中接受护理时，以及3）在他们建立成人护理约一年后。将对视觉叙述进行编码，并使用来自临床访谈和HRQL工具的数据对一致性和不一致性区域进行三角测量。这一发现将被应用于设计更患者敏感的过渡方案和管理策略。将VIA应用于一个新的临床问题，并分析来自原始哮喘试点和Transitions研究的数据。Rich博士将完善和修改这种研究方法，使其足够灵活，可应用于广泛的临床问题，同时保留所获得数据的丰富性。

Michael Rich, MD, MPJ, is an Adolescent Medicine physician with special clinical expertise and research interest in chronic diseases. He is particularly interested in investigating the patient's illness experience in order to develop health care delivery that is effective and sensitive to patient needs. In 1998 , he was awarded the 1998 New Investigator Award of the Society for Adolescent Medicine for his innovative patient- centered research method, Video Intervention/Prevention Assessment (VIA). Derived from established social science research methods, VIA is a qualitative technique which analyzes "video diaries" created by patients of their "real life" experiences with illness and health care to teach clinicians about disease and disability as it exists in the contexts of their lives, environments, and psychosocial features of asthma which had previously been inaccessible to traditional investigative techniques. A K23 award would allow Dr. Rich to advance this research career and further develop the VIA methodology through formal course work in the underlying research methods and analytical techniques, by integrating quantitative measures of clinical effectiveness under the sponsoring mentorship of Donald Goldmann, MD, and by working under the guidance of co-mentors who are leading experts in the research fields which inform VIA, including visual anthropology, qualitative research methods, and quantitative and qualitative health services research. The Research Plan applies VIA to the examination of the transition from pediatric to adult health care systems by young people with chronic, function-limiting conditions and special health care needs. Focusing on patients with myelodysplasia/spina bifida and sickle cell disease, the VIA Transitions study will use clinical, qualitative, and quantitative means to investigate: 1) What is the patient's health-related quality of life (HRQL) before, during, and after transition from pediatric to adult care? 2) What are the patient's needs at each stage of transition and how well are they being met? 3) What is the experience of transitioning care for a patient with complex needs and a function-limiting condition? Study participants will be assessed with clinical interviews and standardized HRQL instruments before making visual narratives of their illness experience at three points: 1) while they are under the care of the pediatric medical system, 2) when they leave pediatrics and initiate care in the adult health care system, and 3) after they have established their adult care for approximately one year. The visual narratives will be coded and triangulated with the data derived from clinical interviews and HRQL instruments for areas of congruence and dissonance. The finding swill be applied to the design of more patient-sensitive transition programs and management strategies. Applying VIA to a new clinical problem and analyzing the data from the original asthma pilot and the Transitions study. Dr. Rich will refine and modify this investigative methodology so that it is flexible enough to be applied to a broad range of clinical questions while retaining the richness of the data derived.