Department of Pediatric Pulmonology, Baylor College of Medicine, Texas Children's Hospital, Houston, Texas.
Department of Nursing, Texas Children's Hospital, Houston, Texas.
Pediatr Pulmonol. 2021 Mar;56(3):630-635. doi: 10.1002/ppul.24761. Epub 2020 Apr 6.
The multidisciplinary team in a pediatric pulmonary hypertension (PH) center can improve the delivery of care to the PH patient by helping them address the different challenges that correlate to a PH diagnosis. Currently, there are a limited number of accredited pediatric PH centers nationwide, and many healthcare facilities have little experience managing patients with this complex and rare disease. Patients with PH may see providers from multiple medical specialties, inherit a high-cost burden from their PH medications, and have little community backing due to unfamiliarity of the disease. The multidisciplinary team can embrace these challenges. Through the delineation of tasks and roles within the composition of the team, patients can experience the support, resources, and care they need. The composition of the team can vary from center to center, but it may include an attending physician, advanced practice provider, nurse, dietitian, physiologists, respiratory therapists, social workers, research coordinators, and subspecialty collaboration including cardiology, pulmonology, genetics, psychology, and palliative care. When composing a multidisciplinary team, consider the heterogeneity of the patient population being served. Look at the resources available and overall community familiarity with PH. It is important to know the center's limits and refer to an expert PH center as necessary. The goal for every patient with pulmonary hypertension is to maximize their quality of life and outcomes, and the use of the multidisciplinary team is one approach to reaching this goal.
儿科肺高血压(PH)中心的多学科团队可以通过帮助 PH 患者应对与 PH 诊断相关的不同挑战,改善他们的护理服务。目前,全国范围内仅有数量有限的经认证的儿科 PH 中心,许多医疗机构在管理这种复杂且罕见疾病的患者方面经验有限。PH 患者可能会接受来自多个医学专业的提供者的治疗,他们的 PH 药物会带来高昂的费用负担,并且由于对疾病不熟悉,他们很少得到社区的支持。多学科团队可以应对这些挑战。通过明确团队成员的任务和角色,患者可以获得他们所需的支持、资源和护理。团队的组成可能因中心而异,但可能包括主治医生、高级执业医师、护士、营养师、生理学家、呼吸治疗师、社会工作者、研究协调员以及包括心脏病学、肺病学、遗传学、心理学和姑息治疗在内的专业合作。在组建多学科团队时,考虑所服务的患者群体的异质性。查看可用的资源和整个社区对 PH 的熟悉程度。了解中心的局限性并在必要时向专家 PH 中心寻求转介非常重要。每个肺高血压患者的目标都是最大限度地提高他们的生活质量和治疗效果,而多学科团队的使用是实现这一目标的一种方法。