Cheung Verna, Siddiq Nancy, Devlin Rebecca, McNamara Caroline, Gupta Vikas
Clinical Nurse Specialist, Princess Margaret Cancer Centre, University of Toronto, Toronto, ON.
MSN in Education Nurse Practitioner (Adult), Princess Margaret Cancer Centre, University of Toronto, Toronto, ON.
Can Oncol Nurs J. 2021 May 1;31(2):165-174. doi: 10.5737/23688076312165174. eCollection 2021 Spring.
Myeloproliferative neoplasms (MPNs) are a group of rare Philadelphia-negative chronic leukemias. Disease rarity has resulted in limited expertise concentrated in specialist centres. Patients are often referred to such expert centres for diagnostic issues, complex decision-making, access to novel drugs through clinical trials, and supportive care. Attending such appointments may increase financial and travel burden, increase caregiver stress, and negatively impact quality of life. To address this, the MPN program at Princess Margaret (PM) Cancer Centre has implemented a shared-care model, working with local healthcare providers to provide ongoing management, and supportive care for MPN patients closer to home. This decreases patient travel burden, while maintaining high-quality patient-centered care. In this article we share our experience implementing the shared-care model. This model is potentially applicable to other chronic hematological malignancies and rare chronic diseases. The ultimate goal of shared-care is not to centralize care, but instead to build a community of accessible care for the patient.
骨髓增殖性肿瘤(MPNs)是一组罕见的非费城染色体阳性慢性白血病。疾病的罕见性导致专业知识有限,集中在专科中心。患者常常因诊断问题、复杂的决策制定、通过临床试验获取新药以及支持性护理等原因被转诊至此类专家中心。前往这些机构就诊可能会增加经济和旅行负担,增加照料者的压力,并对生活质量产生负面影响。为解决这一问题,玛格丽特公主癌症中心(PM)的MPN项目实施了共享护理模式,与当地医疗服务提供者合作,在患者离家更近的地方为MPN患者提供持续管理和支持性护理。这减轻了患者的旅行负担,同时维持了以患者为中心的高质量护理。在本文中,我们分享实施共享护理模式的经验。该模式可能适用于其他慢性血液系统恶性肿瘤和罕见慢性病。共享护理的最终目标不是将护理集中化,而是为患者建立一个可及护理的社区。