Do neurocognitive impairments explain the differences between brain tumor patients and their proxies when assessing the patient’s IADL?

Abstract

Background Neurocognitive impairments are common among brain tumour patients, and may impact patient’s awareness of performance in instrumental activities in daily life (IADL). We examined differences between patient- and proxy-reported assessments of the patient’s IADL, and whether the level of (dis)agreement is associated with neurocognitive impairments. Methods Brain tumour patients and their proxies completed the phase 3 version of the EORTC IADL-BN32 questionnaire measuring IADL, and patients completed six neurocognitive measures. Patient-proxy difference scores in IADL were compared between patients who were defined as neurocognitively impaired (≥2 neurocognitive measures ≥2.0 standard deviations below healthy controls) and non-neurocognitively impaired. With multinomial logistic regression analyses we examined if neurocognitive variables were independently associated with patient-proxy disagreement in IADL ratings. Results Patients (n=81) did not systematically (p<0.01) rate IADL outcomes different than their proxies. Proxies did report more problems on 19/32 individual items and all five scales. This effect was more apparent in dyads with a neurocognitively impaired patient (n=37), compared to dyads with non-neurocognitively impaired patients (n=44). Multinomial logistic regression analyses showed that several neurocognitive variables (e.g., cognitive flexibility and verbal fluency) were independently associated with disagreement between patients and proxies on different scales. Conclusion Neurocognitive deficits seem to play a role in the discrepancies between brain tumour patients and their proxies assessment of patient’s level of IADL . Although replication of our results is needed, our findings suggests that caution is warranted in interpreting self-reported IADL by patients with neurocognitive impairment, and that such self-reports should be supplemented with proxy ratings.

Long-term health-related quality of life in meningioma survivors: A mixed-methods systematic review

“…Importantly, in this review, we did not focus on family caregiver reports, which can substantially differ from patient self-reports, especially when cognitive impairment results in reduced self-awareness of functioning. 37 Still, patients self-reported that changes in personality/behavior, difficulties with communication, concentration, processing speed, and decision-making abilities impact their everyday life. This appeared linked to social functioning, including feelings of isolation and employment issues.…”

Incorporating Information From Proxies for Patient-Centered Outcomes in Adult and Pediatric Oncology Settings

“…Develop standards for optimal proxy selection Evidence from concordance studies suggests that primary family caregivers are better proxies than clinician caregivers in oncology 4,22,33 However, if there are multiple primary family caregivers, it is not clear which caregiver should report, and collecting multiple proxy reports 39 can pose logistical, budgetary, and interpretation challenges Collecting reasons for proxy report (eg, too ill, not cognitively able) should be considered when reasons vary Develop standards for collection of relevant data about proxies Evidence from pediatric 5 and adult oncology 42 suggests that proxy-related factors are associated with proxy reports and thus should be considered for collection More research is needed to determine other factors that may be relevant 39 and enable the development of recommendations and standards for data collection Identify ways to improve proxy reports Better communication has been suggested as a way to improve proxy symptom reporting, 34 but research in the area is scarce Approaches to improve proxy reports can improve the quality of data in oncology research and clinical care Determine when a proxy or a patient is the more reliable reporter, particularly in situations of cognitive impairment Proxy-patient concordance is suboptimal for patients with cancer who have cognitive impairment, [29][30][31] but it is not clear if the proxy or the patient is more reliable Age-based criteria have been used to guide the choice of reporter in pediatrics 43,44 For adults, examples outside oncology on the basis of cognitive impairment 45 may be relevant, but more work is needed…”

“…28 Of concern are findings of lower patient-proxy agreement in adults with glioma who are cognitively impaired. [29][30][31] Collection of both proxy and patient reports is suggested for cognitively impaired patients, 31,32 but the question of how best to triangulate information across reporters and if proxies or patients are more reliable remains.…”

“…As noted above, this is an unanswered question in neuro-oncology. [29][30][31] The suggested approach of collecting data from both proxies and patients 31,32 has logistical and budgetary implications, and the question of how to determine if the patient or the proxy should be the primary reporter remains. In pediatrics, agebased criteria can 43 and have been used 44 to guide the choice of a proxy or a patient report.…”

“…and enable the development of recommendations and standards for data collectionIdentify ways to improve proxy reportsBetter communication has been suggested as a way to improve proxy symptom reporting,34 but research in the area is scarce Approaches to improve proxy reports can improve the quality of data in oncology research and clinical care Determine when a proxy or a patient is the more reliable reporter, particularly in situations of cognitive impairment Proxy-patient concordance is suboptimal for patients with cancer who have cognitive impairment,[29][30][31] but it is not clear if the proxy or the patient is more reliable Age-based criteria have been used to guide the choice of reporter in pediatrics43,44 For adults, examples outside oncology on the basis of cognitive impairment45 may be relevant, but more work is needed Data analysis Determine appropriate methods when both self-report and proxyreport data are available…”