Patient-reported functional executive challenges and caregiver confirmation in adult brain tumor survivors

Abstract

Purpose. The main objective of this study was to provide further information concerning the validity of patient-reported executive function (EF) in survivors of primary brain tumor (PBT) compared with a report provided by each patient's caregiver.Methods. Forty survivors of PBT, 40 non-cancer controls and their proxies completed an assessment of functional executive disorders (e.g., planning, inhibition, shifting and action initiation). Comparisons of self and informant EF reports were examined, for both patients and non-cancer controls. The extent of the concordance between patients' reports and their caregivers' reports was also determined.Results. PBT survivors and their caregivers reported more problems related to EF in contrast with the non-cancer comparison group (significant differences). There was a high level of agreement between patients' and caregivers' ratings within the patient group. Conclusions.This study provides evidence suggesting that at an average of 3.67 (SD=2.31) years following treatment for a PBT, EF difficulties are reported by patients and their caregivers. This study establishes a consistency between what is reported by survivors and what is reported by those who frequently interact with them. Further research investigating the link between these ratings and quality of life as well as other functions is encouraged.Implications for Cancer Survivors. This study's results demonstrate the importance of listening to PBT survivors' perception of EF difficulties. While not confirmed by neuropsychological evaluations, the functional executive challenges reported by these survivors' close relatives reflect what PBT survivors themselves report. Specialists should pay close attention to these difficulties in order to guarantee optimal post-cancer care.

Relationships between executive functioning and health-related quality of life in adult survivors of brain tumor and matched healthy controls

“…Whereas the objective EF assessment only highlighted a deficit in one variable (working memory), self-and informant reports revealed several EF deficits. BRIEF-A GEC was impaired in both patients' and caregivers' reports, and patients and caregivers reported both metacognitive difficulties (MCI) and behavioral regulation deficits (BRI) (see Cantisano et al, 2021, for a more detailed analysis). This result helps to demonstrate the negative impact of EF sequelae on patients' everyday life, confirming recent data in patients with PBT (Loughan et al, 2020;van der Linden et al, 2020), and points to the importance of not relying solely on objective EF tasks to assess the late cognitive effects of PBT (see also Gehring et al, 2015).…”

“…Survivors of PBT (n = 40) were recruited within three university hospital neurosurgery departments, following a procedure described elsewhere (Cantisano et al, 2021). Participants each signed an informed consent form regarding their enrolment and the future publication of their anonymous data.…”

“…Concerning objective EF tasks (Stroop, WAIS-Digit Span subtest, MCST), patients scored significantly lower on working memory (Digit Span Backward). Regarding self-and informant-reported EFs, detailed results are described elsewhere (Cantisano et al, 2021). To summarise, patients and healthy controls differed significantly on the GEC, both for self-and informant reports.…”

“…While not conducted specifically in survivors of PBT, studies undertaking ecological assessments of everyday executive functioning with questionnaires have also demonstrated difficulties in working memory, initiation, planning, and task monitoring, both in patients with high-grade glioma (Loughan et al, 2019) and in patients with meningioma or low-grade glioma (van der Linden et al, 2020). A previous study demonstrated that adult survivors of PBT and their caregivers report more EF-related problems than healthy controls do, suggesting that EF difficulties may be encountered several years after end of treatment (Cantisano et al, 2021).…”

An Examination of Patients and Caregivers on Reddit Navigating Brain Cancer: Content Analysis of the Brain Tumor Subreddit

“…Although specific symptoms depend on the type of brain tumor, common challenges include weakness and balance difficulties along with changes in memory and even personality. Executive functioning can often be significantly impaired, and perception of this decline is often concordant between the patient and caregiver [ 5 , 6 ]. Even though the team members guide patients and caregivers through the process of diagnosis through end-of-life care, patients and caregivers may look for other avenues to express and ultimately process their emotions to make sense of the brain tumor diagnosis.…”