How to live with a meningioma: experiences, symptoms, and challenges reported by patients

Abstract

<jats:title>Abstract</jats:title> <jats:sec> <jats:title>Background</jats:title> <jats:p>We aimed to explore gaps in the care of meningioma patients that could improve quality of care by better understanding symptoms experienced by patients at various stages of treatment, and afterwards.</jats:p> </jats:sec> <jats:sec> <jats:title>Methods</jats:title> <jats:p>A novel 19-item self-administered questionnaire was provided for patients with meningiomas to complete by the American Brain Tumor Association (ABTA) over a 3-month period.</jats:p> </jats:sec> <jats:sec> <jats:title>Results</jats:title> <jats:p>A total of 1852 unique respondents were included. Nearly one-third of all respondents felt they received insufficient information about meningiomas at initial diagnosis (N=607, 32.9%) and 28.8% (N=530) believed they received insufficient information about treatment options. In fact, 34.5% of respondents received the majority of their information from the internet and non-healthcare professionals. The most common concerns after initial diagnosis were risks associated with surgery and/or treatment (36.5%) followed by how the tumor would impact daily life (25%), and the risk of tumor recurrence (12.4%). Respondents indicated that a list of resources available for patients with meningiomas (N=597, 32.3%) would have been most beneficial in regards to their disease experience after their initial diagnosis. Moreover, we found that a substantial proportion of patients continued to report symptoms long after treatment, with fatigue being the most common compared to before treatment (38.2% vs. 57.7%, χ2= 128, p &amp;lt; 0.001).</jats:p> </jats:sec> <jats:sec> <jats:title>Conclusions</jats:title> <jats:p>Patients with meningiomas exhibit symptoms that continue well after treatment with fatigue and cognitive impairments as the most bothersome. Moreover, patients report key communication gaps that can be addressed to improve their disease experience and care.</jats:p> </jats:sec>

Multidimensional Fatigue in Chinese Meningioma Patients Newly Diagnosed : Prevalence, Severity and Risk Factors

“…However, as in gliomas, fatigue was frequently reported as a common and troublesome symptom before and after treatment for meningioma patients [9,18,37]. In our study, we conducted a more in-depth research of multidimensional fatigue in patients with newly diagnosed meningiomas.…”

Multidimensional Fatigue in Chinese Meningioma Patients Newly Diagnosed: Prevalence, Severity and Risk Factors

“…Studies on fatigue in patients with brain tumors were more focused on gliomas with more aggressive and worse clinical prognosis[8, [34][35][36]. However, as in gliomas, fatigue was frequently reported as a common and troublesome symptom before and after treatment for meningioma patients [9,18,37]. In our study, we conducted a more in-depth research of multidimensional fatigue in patients with newly diagnosed meningiomas.…”

Psychological Burden in Meningioma Patients under a Wait-and-Watch Strategy and after Complete Resection Is High—Results of a Prospective Single Center Study

“…Up to 50% of meningioma patients under wait-and-watch or before the operation suffer from significant fatigue, making it one of the most common symptoms in this patient group [16,22]. Approximately 50% of patients reported being diagnosed with meningioma six months after the onset of symptoms, the most common being headache, fatigue, and cognitive deficit [23]. Meningioma patients reported significantly higher fatigue levels pre-and postoperatively compared to normative values [24].…”

“…Therefore, it remains unclear how those patients who suffer from relevant distress can be identified. According to a multinational survey of meningioma patients, approximately one-third of the respondents felt that the information received from the health care provider at the time of diagnosis was inadequate and the same proportion of patients received the majority of the information from the internet [23]. This clearly demonstrates that the means of providing information to the patients must be improved.…”