Baba Ami, McCradden Melissa D, Rabski Jessica, Cusimano Michael D
Injury Prevention Research Office, St. Michael's Hospital, Division of Neurosurgery, Toronto, Ontario, Canada.
Division of Neurosurgery, Department of Surgery, St. Michael's Hospital, University of Toronto, Ontario, Canada.
Neurooncol Pract. 2020 Mar;7(2):228-238. doi: 10.1093/nop/npz054. Epub 2019 Oct 29.
Meningiomas are the most common primary benign brain neoplasms, but despite their commonality, the supportive needs of this patient population have been overlooked. The aim of this study is to identify unmet needs of meningioma patients, caregivers, and health care providers.
We adopted a patient-centered approach by using qualitative interviewing with patients diagnosed with a meningioma who have undergone treatment in the last 10 years since the date of their interview. Informal caregivers (family and/or friends) of the patient population and health care providers who are normally involved in the management and care of meningioma patients were also interviewed. Interview transcripts were subjected to thematic analysis.
Of the 50 participants interviewed, there were 30 patients, 12 caregivers, and 8 health care professionals. Thematic analysis revealed 4 overarching themes: (1) access to targeted postoperative care, (2) financial struggles for patients and their families, (3) lack of information specific to meningiomas and postsurgical management, and (4) lack of psychosocial support.
This study identified supportive needs specific to the meningioma patient population, which predominantly falls within the postoperative phase. The postoperative journey of this patient population could potentially extend to the rest of the patient's life, which necessitates resources and information directed to support postoperative recovery and management. The development of directly relevant supportive resources that support meningioma patients in their postoperative recovery is necessary to improve the health-related quality of life in this patient population.
脑膜瘤是最常见的原发性良性脑肿瘤,但尽管其常见,这一患者群体的支持需求却一直被忽视。本研究的目的是确定脑膜瘤患者、护理人员和医疗服务提供者未得到满足的需求。
我们采用以患者为中心的方法,对自访谈之日起过去10年内接受过治疗的脑膜瘤确诊患者进行定性访谈。还对该患者群体的非正式护理人员(家人和/或朋友)以及通常参与脑膜瘤患者管理和护理的医疗服务提供者进行了访谈。对访谈记录进行了主题分析。
在接受访谈的50名参与者中,有30名患者、12名护理人员和8名医疗专业人员。主题分析揭示了4个总体主题:(1)获得有针对性的术后护理;(2)患者及其家庭的经济困难;(3)缺乏特定于脑膜瘤和术后管理的信息;(4)缺乏心理社会支持。
本研究确定了脑膜瘤患者群体特有的支持需求,这些需求主要集中在术后阶段。该患者群体的术后历程可能会延伸到患者的余生,这就需要有资源和信息来支持术后康复和管理。开发直接相关的支持资源以帮助脑膜瘤患者术后康复,对于提高该患者群体与健康相关的生活质量是必要的。