Primary Care Needs for Patients with Vascular Anomalies: Improving Continuity of Care and Care Coordination in Rare Diseases

血管异常患者的初级护理需求：提高罕见疾病护理的连续性和护理协调

• 批准号: 10802824
• 负责人: Anna M. Kerr
• 金额: $ 4.96万
• 依托单位: OHIO UNIVERSITY ATHENS
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-15 至 2025-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10802824
• 关键词: Primary; Care; Needs; Patients; Vascular

PROJECT SUMMARY/ABSTRACT Thirty million people in the United States live with a rare disorder, and approximately half of those affected are children. The current study focuses on children with vascular anomalies (VAs), a spectrum of rare congenital disorders that are often misdiagnosed and mistreated. Complex VAs can result in pain, disfigurement, coagulopathy, dysfunction, and death if left untreated. Therefore, children require the care of VA specialists, and coordination between primary and specialty care is imperative for children with rare diseases to ensure patients receive comprehensive, safe, and effective care. This is especially true for families living in rural communities, given that VA specialists are clustered at urban pediatric medical centers. However, caregivers of children with rare diseases struggle to get their children the comprehensive care they need. Our preliminary data suggests that common barriers to care include a fragmented system of care, distance to specialists, lack of knowledgeable pediatricians, and inadequate local resources. Coordinated primary and specialty care is essential for children with VAs because it can help reduce the risk of emergency room visits, hospitalizations, and readmissions. Therefore, the proposed study aims to identify facilitators and barriers to high-quality care coordination for patients with VAs, especially those in rural areas. Little is known about gaps in care coordination and continuity of care for patients with rare diseases or the ways that geographic location influences care coordination. Therefore, the goal of our proposed study is to fill this important gap by using an innovative triadic research design that involves interviews with caregiver-pediatrician-VA specialist triads to gain a comprehensive understanding of care coordination for children with VAs. We will achieve this goal through three aims: Aim 1: To characterize VA specialists’ perspectives on facilitators and barriers to care coordination for patients with VAs, we will conduct semi-structured interviews with VA specialists practicing at multidisciplinary VA centers. Aim 2: To characterize caregivers of VA patients’ perspectives on facilitators and barriers to care coordination for patients with VAs, we will interview caregivers of children with VAs who live in rural and non-rural areas. Aim 3: To characterize pediatricians’ perspectives on facilitators and barriers to care coordination for patients with VAs, we will interview pediatricians who care for patients with VAs, sampling clinicians who practice in rural and non-rural areas. We will use thematic analysis to analyze our interview transcripts. The analysis will provide a comprehensive overview of facilitators and barriers to care coordination, with a comparison of rural and non-rural contexts, through a synthesis of pediatricians’, specialists’, and caregivers’ perspectives. The results will reveal modifiable factors that can be leveraged to design future interventions to improve primary care.

项目摘要/摘要 美国有300万人生活在一种罕见的疾病中，大约一半受影响的人 是孩子。当前的研究重点是血管异常（VAS）的儿童，这是一系列罕见的 经常被诊断和虐待的先天性疾病。复杂的VA会导致疼痛，毁容， 如果未治疗，凝血病，功能障碍和死亡。因此，儿童需要VA专家的照顾，并且 对于罕见疾病的儿童必须确保初级和专业护理之间的协调 患者获得全面，安全和有效的护理。对于居住在农村的家庭来说尤其如此 鉴于VA专家聚集在城市儿科医疗中心，社区。但是，护理人员 罕见疾病的儿童努力为孩子提供所需的综合护理。我们的 初步数据表明，公共护理障碍包括零散的护理系统，距离 专家，缺乏知识渊博的儿科医生，当地资源不足。协调的主要和 专业护理对VAS儿童至关重要，因为它可以帮助降低急诊室的风险 就诊，住院和再入院。因此，拟议的研究旨在确定促进者和 为有VA的患者，尤其是在粗糙地区的患者，高质量护理协调的障碍。鲜为人知 关于罕见疾病患者的护理协调和护理连续性的差距或地理的方式 位置影响护理协调。因此，我们拟议的研究的目的是通过 使用创新的三元研究设计，该设计涉及对护理人员 - 佩蒂科医生-VA专家的访谈 三合会以对VAS儿童的护理协调获得全面的了解。我们将实现这一目标 实现三个目标：目标1：描述VA专家对促进者和护理障碍的看法 针对VAS患者的协调，我们将对VA专家进行半结构化访谈 多学科VA中心。目标2：描述VA患者对促进者和促进者的看法 为VAS患者进行护理协调的障碍，我们将采访居住在VA的儿童的护理人员 农村和非农村地区。目标3：描述儿科医生对促进者和护理障碍的看法 针对VAS患者的协调，我们将采访照顾VAS患者的儿科医生 在农村和非农村地区执业的临床医生。我们将使用主题分析来分析我们的面试 成绩单。该分析将提供有关促进者和护理协调障碍的全面概述， 通过比较农村和非农村环境，通过综合儿科医生，专家和 看护人的观点。结果将揭示可修改的因素，这些因素可以利用来设计未来 改善初级保健的干预措施。