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.

项目概要/摘要 美国有 3000 万人患有罕见疾病，其中大约一半受到影响 是孩子。目前的研究重点是患有血管异常（VA）的儿童，这是一系列罕见的疾病 经常被误诊和误治的先天性疾病。复杂的 VA 会导致疼痛、毁容、 如果不及时治疗，会出现凝血障碍、功能障碍甚至死亡。因此，儿童需要 VA 专家的照顾，并且 对于患有罕见病的儿童来说，初级保健和专科护理之间的协调至关重要，以确保 患者得到全面、安全、有效的护理。对于生活在农村的家庭尤其如此 鉴于 VA 专家集中在城市儿科医疗中心。然而，照顾者 患有罕见疾病的儿童很难为他们的孩子提供所需的全面护理。我们的 初步数据表明，护理的常见障碍包括护理系统分散、距离遥远 专家、缺乏知识丰富的儿科医生以及当地资源不足。协调初级和 特殊护理对于患有 VA 的儿童至关重要，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 VA 患者（尤其是农村地区的患者）难以获得高质量的护理协调。鲜为人知 关于罕见病患者的护理协调和护理连续性方面的差距或地理区域的方式 位置影响护理协调。因此，我们提出的研究的目标是通过以下方式填补这一重要空白： 采用创新的三元研究设计，其中包括采访护理人员-儿科医生-VA 专家 三合会，以全面了解 VA 儿童的护理协调。我们将实现这一目标 通过三个目标实现目标： 目标 1：描述 VA 专家对护理促进因素和障碍的观点 对于 VA 患者的协调，我们将与在以下机构执业的 VA 专家进行半结构化访谈： 多学科 VA 中心。目标 2：描述 VA 患者的护理人员对协助者和 VA 患者的护理协调障碍，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：描述儿科医生对护理促进因素和障碍的看法 协调患有 VA 的患者，我们将采访照顾 VA 患者的儿科医生，抽样 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采访 成绩单。该分析将全面概述护理协调的促进因素和障碍， 通过儿科医生、专家和非农村背景的综合比较 照顾者的观点。结果将揭示可修改的因素，可用于设计未来 改善初级保健的干预措施。