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Background Neurocognitive impairments are common among brain tumor patients, and may impact patients’ 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 tumor 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 < .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 tumor 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.

Purpose Cancer-related neurocognitive impairment and poor sleep are prevalent in cancer survivors and have a negative impact on their quality of life. This systematic review studies the association between sleep disturbance and neurocognitive functioning, as well as the potential positive effects of sleep interventions on neurocognitive functioning in cancer survivors. In addition, we aimed at determining the potential positive effects of sleep interventions on neurocognitive functioning in this population. Methods Following PRISMA guidelines for reporting systematic reviews and meta-analyses, a comprehensive PubMed, Embase, PsycINFO, and CINAHL search was performed. Inclusion criteria were adult cancer survivors, self-reported or objective measures of neurocognitive functioning and sleep quality, or reports on the association between sleep and neurocognitive functioning. Results Of the 4,547 records retrieved, 17 studies were retained for this review. Twelve studies were correlational, and five reported on interventions aimed at improving sleep quality. All studies that included self-reported neurocognitive functioning found that poorer sleep was associated with worse neurocognitive functioning. In four out of eight studies, poorer sleep was associated with objective neurocognitive impairment. Three out of five interventional studies showed neurocognitive functioning improved with improved sleep. Conclusions While poor sleep in cancer survivors is associated with self-reported neurocognitive impairment, the association between poor sleep and objective neurocognitive impairment is less evident. Implications for Cancer Survivors It is important that care providers are aware of the association between sleep and neurocognitive functioning and that improving sleep quality can be a way to decrease neurocognitive impairment in cancer survivors.

BACKGROUND Neurocognitive deficits are common among brain tumour patients, and may impact on patient awareness of deficits in instrumental activities in daily life (IADL). This study aimed to examine differences between patient-reported and proxy-reported assessments of the patient’s performance of IADL, and whether the level of (dis)agreement is associated with neurocognitive deficits. MATERIAL AND METHODS A phase III EORTC questionnaire measuring IADL in brain tumour patients (EORTC IADL-BN32) and six neurocognitive test measures were administered as part of a larger multicentre international study designed to develop a brain tumour specific IADL questionnaire. Bland-Altman plots and Mann-Whitney U tests were used to evaluated patient- and proxy-reported IADL on a group level. Subsequently, Mann-Whitney U tests were performed to compare patient-proxy difference scores (patient IADL score - their proxy IADL score) between patients who were considered clearly neurocognitively impaired (≥2 neurocognitive test measures; ≤2.0 SD below healthy controls) and patients who were not. Furthermore, multinomial logistic regression analyses were performed to examined which sociodemgraphic, clinical, and particularly neurocognitive variables were independently associated with patients and proxies differing in their evaluation of patient’s IADL. RESULTS Patients (N=81) and proxies (N=81), on group level, did not significantly differ on either the IADL individual item or scale scores. However, significant differences were found on patient-proxy difference scores between patients who were (N=37) and were not (N=44) considered clearly neurocognitively impaired for 10/32 individual items and one of the scales (i.e. Scale 4: Administrative tasks), all showing that the proxies of clearly neurocognitively impaired patients reported more problems relative to the patients themselves, compared to proxies of patients not clearly neurocognitively impaired. Furthermore, for each scale, a neurocognitive variable, either impaired information processing speed, cognitive flexibility, verbal fluency or the number of neurocognitive test measures impaired, was found to be independently associated with proxies reporting more problems. For 4/5 scales, a clinical variable was additionally independently associated with proxies reporting more problems. Only one variable was independently associated with patient reporting more problems, namely being in active treatment was found to be associated with patients reporting more problems on Scale 4: Administrative tasks. CONCLUSION Results imply a consistent trend of clearly neurocognitively impaired patients underreporting problems with IADL compared to their proxies. It would therefore be advised to administer both the patient- and proxy-version of the EORTC IADL-BN32, particularly if neurocognitive deficits are presumed.

Purpose Being able to function independently in society is an important aspect of quality of life. This ability goes beyond self-care, requires higher order cognitive functioning, and is typically measured with instrumental activities of daily living (IADL) questionnaires. Cognitive deficits are frequently observed in brain tumour patients, however, IADL is almost never assessed because no valid and reliable IADL measure is available for this patient group. Therefore, this measure is currently being developed. Methods This international multicentre study followed European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group module development guidelines. Three out of four phases are completed: phases (I) generation of items, (II) construction of the item list, and (III) pre-testing. This paper reports the item selection procedures and preliminary psychometric properties of the questionnaire. Brain tumour patients (gliomas and brain metastases), their informal caregivers, and health care professionals (HCPs) were included. Results Phase I (n = 44 patient-proxy dyads and 26 HCPs) generated 59 relevant and important activities. In phase II, the activities were converted into items. In phase III (n = 85 dyads), the 59 items were pre-tested. Item selection procedures resulted in 32 items. Exploratory factor analysis revealed a preliminary dimensional structure consisting of five scales with acceptable to excellent internal consistency (α = 0.73–0.94) and two single items. For three scales, patients with cognitive impairments had significantly more IADL problems than patients without impairments. Conclusion A phase IV validation study is needed to confirm the psychometric properties of the EORTC IADL-BN32 questionnaire in a larger international sample.

Background Everyday functioning can be assessed using measures of basic activities of daily living (BADL) or instrumental activities of daily living (IADL). The aim of this review was to provide an overview of the scope and specific content of BADL and/or IADL covered by currently used questionnaires in adult brain tumor patient studies. Methods Electronic databases were searched up to April 2017 to identify all eligible questionnaires with items regarding BADL/IADL in studies with adult brain tumor patients. Articles were selected using predetermined in- and exclusion criteria. Items with similar content were clustered into domains based on type of activity. Results Thirty-one unique questionnaires containing at least one BADL and/or IADL item were identified; 21 and 29 questionnaires containing ≥ 1 BADL or IADL item, respectively. The percentage of ADL items in these questionnaires ranged from 4 to 100%. Only two questionnaires were specifically developed to measure BADL (Barthel Index and Katz-ADL) and two specifically for IADL (Lawton-Brody IADL and preliminary IADL-BN). Content clustering revealed that IADL had a larger variation in content (31 domains, e.g. work or leisure time activities) compared to BADL (15 domains, e.g. mobility or bathing/washing). Conclusion Thirty-one questionnaires previously used in brain tumor studies contained items on BADL and/or IADL and covered a wide range of content, in particular for IADL. It is currently unclear which BADL/IADL are most relevant for brain tumor patients, and this should therefore be evaluated. Next, existing questionnaires could be adapted or validated, or new measures can be developed to meet these needs. Electronic supplementary material The online version of this article (10.1007/s11060-019-03136-9) contains supplementary material, which is available to authorized users.

Brain tumour patients may suffer from a variety of tumour or treatment related disabilties. The WHO International Classification of Functioning, Disability and Health (ICF) describes changes in health and health-related domains on three levels of human functioning: (1) body, (2) person and (3) society in which dysfunctions can manifest, respectively, as (a) impairments, (b) activity limitations and (c) participation restrictions. Assessing patients’ level of functioning is valuable in both clinical research and clinical practice, and should be assessed on all tree levels of dysfunction for a complete picture of health. Neurorehabilitation can be implemented to address patients’ various dysfunctions and may contribute to maintaining and improving HRQoL. Several neurorehabilitative interventions are available for brain tumour patients. The potential effects of rehabilitation on the patients functioning may vary in the different phases of the disease. The adaptive rehabilitation program may therefore be useful for brain tumour patients. It consists of four categories of intervention strategies, i.e. prevention, restoration, support and palliation, which are introduced in the relevant stages of the disease, from the time of diagnosis until end of life. Although several tools exist to assess functioning and well-being and various neurorehabilitative interventions are available, there is still a need for more empirical studies evaluating neurorehabilitative interventions in brain tumour patients using brain tumour-specific tools on all levels of functioning.

BACKGROUND In brain tumour patients, impairments in every day functioning can impact quality of life, and are therefore an important outcome in both clinical trials and practice. One way to measure every day functioning is with an activities of daily living (ADL) questionnaire. Instrumental ADL (IADL) are the cognitively more complex activities, that are essential to function autonomously within society. Cognitive decline may therefore negatively impact IADL, making these activities particularly relevant to brain tumour patients. The aim of this study is to develop a reliable and valid questionnaire to measure IADL in primary malignant and metastatic brain tumour patients. MATERIAL AND METHODS The questionnaire development study followed the standard European Organisation for Research and Treatment of Cancer (EORTC) four phase methodology: (I) generation of activities list, (II) construction of item list, (III) pre-testing, and (IV) field testing. This report covers phases I-III. To ensure cross-cultural validity, participants were recruited from different countries (The Netherlands, United Kingdom, Italy, Austria and Japan). In phase I, potential activities were identified based on a literature review and in-depth interviews with patients, proxies and healthcare professionals. In phase II, activities were turned into items, and translated into all required languages by the EORTC Translation Unit. In phase III, the item list was pre-tested in patient-proxy dyads. In accordance with predetermined decision rules to reduce items, final items were selected, and preliminary psychometric properties (i.e. factor structure, validity, reliability) were assessed. RESULTS Phase I (N=44 dyads) resulted in 59 IADL activities which were converted into 59 items in phase II. In phase III, N=85 dyads completed and reviewed this item list. The item list was subsequently reduced to 32 items. An exploratory factor analysis indicated several items measuring similar underlying constructs (e.g. domestic life and using computer/smartphone) showing acceptable to good (α≥0.7) internal consistency (range α=0.69–0.89). Seven items were less related to these underlying constructs (e.g. work or managing your own medication), and therefore single items. Construct validity, measured with known-group comparisons analyses between cognitively impaired and unimpaired patients, showed significant differences in scores between the two groups on some scales and several single items. CONCLUSION The currently developed EORTC IADL-BN32 questionnaire can be a valuable asset in assessing IADL functioning in brain tumour patients, but further validation in phase IV is required and is planned.

BACKGROUND: Brain tumour patients may experience impairments in everyday functioning due to both physical and cognitive symptoms. Measures of everyday functioning may therefore be relevant for brain tumour patients in both clinical trials and practice. Everyday functioning can be assessed using activity of daily living (ADL) outcome measures. There are two categories of ADL: basic activities of daily living (BADL; e.g. washing and dressing) and instrumental activities of daily living (IADL; e.g. shopping or cooking). The aim of this systematic review was to identify outcome measures containing items on BADL and/or IADL that currently are used in studies with brain tumour patients, and to assess the content validity of these instruments. MATERIAL AND METHODS: Several electronic databases (i.e. PubMed, Embase, Cochrane, PsycINFO and CINAHL) were searched up to April 2017 to identify studies with brain tumour patients that used outcome measures with ADL items. Articles were selected based on predetermined in- and exclusion criteria. RESULTS: The literature search identified 31 unique outcome measures containing items on BADL and/or IADL. There were 22 (71%) outcome measures containing BADL items and 29 (94%) outcome measures containing IADL items. More than half (65%) of the outcome measures contained both BADL and IADL items. The number of BADL items in each questionnaire ranged from 0% to 83%, and from 0% to 100% for IADL items. Only two outcome measures were specifically developed to measure BADL (Barthel Index and Katz-ADL), and two specifically for IADL (Lawton-Brody IADL and preliminary IADL-brain tumour). However, these instruments have not (yet) been validated in brain tumour patients. CONCLUSION: Currently, there is a lack of suitable options to sufficiently measure BADL and/or IADL in brain tumour patients. Validation of currently existing BADL and IADL measures in brain tumor patients seems necessary, or the development of new tools.

The authors regret as the name of the second author was published incorrectly. The correct surname is ‘Biesbroek’ and the correct first names are “J. Matthijs”. The authors would like to apologise for any inconvenience caused.