Congruence of primary brain tumor patient and caregiver symptom report

Abstract

BACKGROUND: Evaluating the severity of symptoms in patients with primary brain tumors (PBTs) is important in clinical care and research but may be difficult due to patient neurocognitive (NC) impairment. This study was conducted to evaluate the congruence of symptom reporting in patient and caregiver dyads, examining potential impact of NC impairment and Karnofsky performance status (KPS). METHODS: PBT patients undergoing NC testing and their caregivers were included in this study. These dyads (paired patient and caregiver group) completed the MD Anderson Symptom Inventory-Brain Tumor Module prior to testing, and impairment was categorized based on NC test scores. Concordance and equivalency was then assessed using Bland-Altman analysis and 2 onesided techniques. RESULTS: A total of 115 dyads participated. Median patient and caregiver age was 49 and 51 years, respectively, and 63% of patients were male (73% female caregivers). Most patients had a good KPS (!90, 66%) but were classified as NC impaired (58%). Caregiver's report of patient symptoms are congruent to the self-report of the patient. Equivalency between patient and caregiver report were found using prespecified confidence intervals. KPS group (good, !90; poor, 80) comparisons of equivalency indicated no significant differences in symptoms and interference reporting between dyads (good ¼ 0.49, P >.05; and poor ¼ 0.3, P >.05) overall, but there was a tendency for higher report by caregivers if the patients had a poor KPS. CONCLUSIONS: Caregivers of PBT patients have similar assessments of symptom severity (highly congruent) with patient self-report regardless of NC function or KPS. These findings suggest that caregivers may serve as proxy report of symptoms for primary brain tumor patients.

Concordance of patient and caregiver reports in evaluating quality of life in patients with malignant gliomas and an assessment of caregiver burden

“…27 In a recent study by Armstrong et al that examined the congruence of malignant glioma patient and caregiver symptom reports, caregivers were observed to be adequate proxies irrespective of patient neurocognitive functioning or Karnofsky performance status. 16 Furthermore, the level of concordance between patient and caregiver QOL reports in this study is comparable to that reported in other cancer types. Two studies have found that overall patientcaregiver concordance was high in patients with predominantly breast and gastrointestinal cancers, 10,11 and the same was reported in a study of patients with advanced cancers (predominantly breast).…”

“…9 -15 Results have suggested that caregiver assessments are comparable to patient assessments of physical functioning but are more divergent in psychosocial domains. Although the concordance of malignant glioma patient and caregiver symptom reports has been examined in a fairly large study, 16 there is limited research focusing on the concordance of QOL evaluations for patients with malignant glioma. Accordingly, the primary purpose of this study was to investigate the concordance between malignant glioma patients and their caregivers on QOL assessments as measured by the Functional Assessment of Cancer Therapy-Brain (FACT-Br) instrument.…”

Holistic needs assessment in brain cancer patients: A systematic review of available tools

“…There were four studies that reported the development of the MDASI‐BT for clinical and research purposes. The first study undertook item generation and content validity (Armstrong et al., ), the second focused on reliability and validity testing (Armstrong et al., ), and two studies looked at the test–retest reliability (Armstrong, Vera‐Bolanos, Acquaye, Gilbert, & Mendoza, ; Armstrong et al., ). All participants for all studies were recruited from a large cancer centre in Texas, with the exception of the inclusion of experts recruited to develop content validity with 50% recruited out with the institution (Armstrong et al., ).…”

Impact of neurocognitive deficits on patient–proxy agreement regarding health-related quality of life in low-grade glioma patients

“…Interestingly, a study that focused on screening for major depressive disorder in glioma patients [55] did not find patient–proxy agreement to be associated with severity of patient cognitive impairment, although there was frequent disagreement between glioma patients and proxies reports of depressive symptoms. A study that focused on the effect of neurocognitive functioning and performance status (KPS) on patient–proxy concordance [56] found patients and proxies to have highly congruent assessments of symptom severity regardless of patients’ neurocognitive functioning and performance status. Use of proxies as a substitute for the patient self-report of HRQOL should thus be treated with caution, always taking into consideration the possibility of potential bias.…”