PDF(Pubmed)
Abstract：
UNASSIGNED: Patients with complex rare disorders often require the care of multiple specialists. Effective coordination between primary and specialty care is needed to ensure patients receive high-quality care. Previous research has documented the importance of primary care clinicians providing referrals to specialty care and the importance of specialists in helping patients reach a diagnosis. However, little is known about primary care clinicians\' roles in the ongoing care of patients with rare disorders. In the current study, we explored the role of primary care clinicians in the care of rare and complex vascular anomalies.
UNASSIGNED: Data were collected using semi-structured qualitative interviews with 34 parents and 25 adult patients recruited from advocacy groups for patients with complex vascular anomalies participated. We asked participants about their diagnosis, care experiences, and communication with clinicians. We used thematic analysis to identify themes illustrating the roles of primary care clinicians.
UNASSIGNED: PCC roles were characterized by four behaviors. Supporting behaviors included learning more about vascular anomalies and asking participants about the care they received from specialists. Facilitating included providing referrals, ordering tests, and engaging in problem-solving. Interfering included failing to provide referrals or help participants coordinate care, ordering incorrect tests, or making inappropriate recommendations. Disregarding included focusing narrowly on primary care needs and not showing concern about the vascular anomaly.
UNASSIGNED: The results reveal opportunities to improve primary care for patients with vascular anomalies. Disregarding and interfering behaviors furthered the division between primary and specialty care for patients with vascular anomalies and prevented patients from receiving comprehensive primary care. Supporting and facilitating behaviors convey genuine interest in the care of the vascular anomaly and a commitment to helping the patient and parent.
UNASSIGNED: Data were collected using semi-structured qualitative interviews with 34 parents and 25 adult patients recruited from advocacy groups for patients with complex vascular anomalies participated. We asked participants about their diagnosis, care experiences, and communication with clinicians. We used thematic analysis to identify themes illustrating the roles of primary care clinicians.
UNASSIGNED: PCC roles were characterized by four behaviors. Supporting behaviors included learning more about vascular anomalies and asking participants about the care they received from specialists. Facilitating included providing referrals, ordering tests, and engaging in problem-solving. Interfering included failing to provide referrals or help participants coordinate care, ordering incorrect tests, or making inappropriate recommendations. Disregarding included focusing narrowly on primary care needs and not showing concern about the vascular anomaly.
UNASSIGNED: The results reveal opportunities to improve primary care for patients with vascular anomalies. Disregarding and interfering behaviors furthered the division between primary and specialty care for patients with vascular anomalies and prevented patients from receiving comprehensive primary care. Supporting and facilitating behaviors convey genuine interest in the care of the vascular anomaly and a commitment to helping the patient and parent.
摘要：
■患有复杂罕见疾病的患者通常需要多位专家的护理。需要在初级护理和专科护理之间进行有效协调，以确保患者获得高质量的护理。先前的研究已经记录了初级保健临床医生提供专业护理转诊的重要性，以及专家帮助患者做出诊断的重要性。然而,对初级保健临床医生在罕见疾病患者的持续护理中的作用知之甚少。在目前的研究中,我们探讨了初级保健临床医师在罕见和复杂血管异常治疗中的作用.
■采用半结构化的定性访谈方法，对34名家长和25名来自倡导组的复杂血管异常患者进行了调查。我们询问了参与者的诊断，护理经验，与临床医生沟通。我们使用主题分析来确定说明初级保健临床医生角色的主题。
■PCC角色的特征在于四种行为。支持行为包括更多地了解血管异常，并询问参与者从专家那里获得的护理。促进包括提供转介，订购测试，参与解决问题。干扰包括未能提供转介或帮助参与者协调护理，订购不正确的测试，或者提出不恰当的建议。忽视包括狭隘地关注初级保健需求，而不关注血管异常。
■结果揭示了改善血管异常患者的初级保健的机会。忽视和干扰行为进一步促进了血管异常患者的初级和专科护理之间的划分，并阻止了患者接受全面的初级护理。支持和促进行为传达了对血管异常护理的真正兴趣，并致力于帮助患者和父母。
■采用半结构化的定性访谈方法，对34名家长和25名来自倡导组的复杂血管异常患者进行了调查。我们询问了参与者的诊断，护理经验，与临床医生沟通。我们使用主题分析来确定说明初级保健临床医生角色的主题。
■PCC角色的特征在于四种行为。支持行为包括更多地了解血管异常，并询问参与者从专家那里获得的护理。促进包括提供转介，订购测试，参与解决问题。干扰包括未能提供转介或帮助参与者协调护理，订购不正确的测试，或者提出不恰当的建议。忽视包括狭隘地关注初级保健需求，而不关注血管异常。
■结果揭示了改善血管异常患者的初级保健的机会。忽视和干扰行为进一步促进了血管异常患者的初级和专科护理之间的划分，并阻止了患者接受全面的初级护理。支持和促进行为传达了对血管异常护理的真正兴趣，并致力于帮助患者和父母。
