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Background The clinical relevance of Health-Related Quality of Life (HRQoL) in meningioma patients has been increasingly acknowledged in recent years. Various questionnaires have been used. However, almost none of these questionnaires has been particularly developed for and/or validated in this patient group. Therefore, the aim of this study was to assess the relevance and comprehensiveness of existing HRQoL questionnaires used in meningioma research and to assess the agreement between patients and health care professionals (HCPs) on the most relevant and important HRQoL issues. Methods A systematic literature search, following the PRISMA statement, was conducted to identify all HRQoL questionnaires used in meningioma research. Semi-structured interviews were organized with patients and HCPs to (1) assess the relevance of all issues covered by the questionnaires (score 0–3: not relevant–highly relevant), (2) assess the ten most important issues, and (3) identify new relevant HRQoL issues. Results Fourteen different questionnaires were found in the literature, comprising 140 unique issues. Interviews were conducted with 20 patients (median age 57, 71% female) and 10 HCPs (4 neurosurgeons, 2 neurologists, 2 radiotherapists, 1 rehabilitation specialist, 1 neuropsychologist; median experience 13 years). Meningioma patients rated 17–80% of the issues in each of the questionnaires as relevant, HCPs 90–100%. Patients and HCPs agreed on the relevance of only 49 issues (35%, Cohen’s kappa: 0.027). Both patients and HCPs considered lack of energy the most important issue. Patients and HCPs suggested five additional relevant issues not covered by current HRQoL questionnaires. Conclusions Existing HRQoL questionnaires currently used in meningioma patients do not fully cover all relevant issues to these patients. Agreement between patients and HCPs on the relevance of issues was poor. Both findings support the need to develop and validate a meningioma-specific HRQoL questionnaire. Electronic supplementary material The online version of this article (10.1007/s00701-017-3332-8) contains supplementary material, which is available to authorized users.

Purpose Patients with pituitary adenomas often present with visual deficits. While the aim of endoscopic endonasal transsphenoidal surgery (EETS) is to improve these deficits, permanent worsening is a possible outcome. The aim of this meta-analysis was to evaluate the effect of EETS for pituitary adenomas on visual outcomes. Methods A meta-analysis was conducted according to the PRISMA guidelines. Pooled prevalence was calculated for complete recovery, improvement, and deterioration of visual field deficits, visual acuity and unspecified visual function in fixed- and random-effect models, including assessment of heterogeneity (I2) and publication bias (Begg’s test). Results Out of 2636 articles, 35 case series were included in the meta-analysis. Results are described for fixed-effect models. For patients with impaired visual acuity, only one study reported complete recovery (27.2%). Pooled prevalence for improvement was 67.5% (95% CI = 59.1–75.0%), but with considerable heterogeneity (I2: 86.0%), and 4.50% (95% CI = 1.80–10.8%) for patients experiencing deterioration. For patients with visual field deficits, the prevalence was 40.4% (95% CI = 34.8–46.3%) for complete recovery, 80.8% (95% CI = 77.7–83.6%) for improvement, and 2.3% (95% CI = 1.1–4.7%) for deterioration. For the unspecified visual outcomes, pooled prevalence of complete recovery was 32.9% (95% CI: 28.5–37.7%), but with considerable heterogeneity (I2 = 84.2%). The prevalence was 80.9% (95% CI = 77.9–83.6) for improvement and 2.00% (95% CI = 1.10–3.40%) for deterioration. Random-effect models yielded similar results. Publication bias was non-significant for all the outcomes. Conclusion While visual deficits improved after EETS in the majority of patients, complete recovery was only achieved in less than half of the patients and some patients even suffered from visual deterioration. Electronic supplementary material The online version of this article (doi:10.1007/s11102-017-0815-9) contains supplementary material, which is available to authorized users.

Background: Surgical innovation is different from the introduction of novel pharmaceuticals. To help address this, in 2009 the IDEAL Collaboration (Idea, Development, Exploration, Assessment, Long-term follow-up) introduced the five-stage framework for surgical innovation. To evaluate the framework feasibility for novel neurosurgical procedure introduction, two innovative surgical procedures were examined: the endoscopic endonasal approach for skull base meningiomas (EEMS) and the WovenEndobridge (WEB device) for endovascular treatment of intracranial aneurysms. Methods: The published literature on EEMS and WEB devices was systematically reviewed. Identified studies were classified according to the IDEAL framework stage. Next, studies were evaluated for possible categorization according to the IDEAL framework. Results: Five hundred seventy-six papers describing EEMS were identified of which 26 papers were included. No prospective studies were identified, and no studies reported on ethical approval or patient informed consent for the innovative procedure. Therefore, no clinical studies could be categorized according to the IDEAL Framework. For WEB devices, 6229 articles were screened of which 21 were included. In contrast to EEMS, two studies were categorized as 2a and two as 2b. Conclusion: The results of this systematic review demonstrate that both EEMS and WEB devices were not introduced according to the (later developed in the case of EEMS) IDEAL framework. Elements of the framework such as informed consent, ethical approval, and rigorous outcomes reporting are important and could serve to improve the quality of neurosurgical research. Alternative study designs and the use of big data could be useful modifications of the IDEAL framework for innovation in neurosurgery.

BACKGROUND: Previous studies reported that meningioma patients have impaired health-related quality of life (HRQoL) and cognitive function up to 5 years after intervention. We aimed to assess the long-term disease burden of meningioma patients. METHODS: In this multicenter cross-sectional study, intracranial meningioma patients at a median of 9.9 years after anti-tumor therapy were included. HRQoL was measured with the SF-36 and EORTC QLQ-BN20, anxiety and depression with the Hospital Anxiety and Depression Scale (11/21 points is indicative for probable anxiety or depression), and objective cognitive functioning on six domains (z-score< -1.5 is defined as a clinically relevant deficit). Generalized linear models were used to compare meningioma patients with healthy controls, corrected for age, sex, educational level and comorbidities, and one-sample t-tests to compare meningioma patients with data of newly diagnosed glioblastoma. Patient recruitment and data collection is still in progress. RESULTS: 164 meningioma patients were included (mean age:63.9 years, WHO grade I:91.7%, surgery:89.2%, radiotherapy:14.6%). Compared with 110 controls, meningioma patients had worse HRQoL scores on 4/10 SF-36 scales/component scores: role limitations due to physical problems and emotional problems, social functioning, and the mental component score (range mean difference: 4.4–13.8, all p0.05), and better on all other items/scales. More patients suffered from probable anxiety (14.3%) and depression (7.5%) than controls (anxiety: 3.7%, p=0.015; depression: 7.5%, p=0.011). Clinically relevant cognitive deficits were found in executive function (10.9%), verbal memory (19.4%), working memory (13.4%), attention (10.3%), information processing (25.0%) and psychomotor speed (14.4%). CONCLUSION: Almost 10 years after the last anti-tumor treatment, meningioma disease burden is still significant. A considerable number of patients have impaired HRQoL, suffer from cognitive deficits and report high levels of anxiety and depression.

While surgical and radiotherapeutic improvements increased life expectancy of meningioma patients, little is known about these patients' health-related quality of life (HRQoL). Therefore, the objectives of this systematic review were to assess HRQoL in meningioma patients, the methodological quality of the used questionnaires (COSMIN criteria), and the reporting level of patient-reported outcomes (PROs) in the included studies (International Society of Quality of Life Research criteria). Nineteen articles met our inclusion criteria. HRQoL was measured with 13 different questionnaires, 3 validated in meningioma patients. According to our predefined cutoff, HRQoL data were reported sufficiently in 5 out of 19 studies. Both findings hamper interpretation of the PRO results. In general, meningioma patients reported clinically worse HRQoL than healthy controls. Although meningioma patients had better HRQoL than glioma patients, this difference was not clinically relevant. Radiotherapy seemed to improve some domains of HRQoL in the short term, while HRQoL decreased to pre-radiotherapy levels in the long term. Tumor resection increased HRQoL, but long-term follow-up showed persistent reduced HRQoL compared with healthy controls. These results suggest an impaired HRQoL in meningioma patients, even years after anti-tumor treatment. Results of this systematic review warrant high quality prospective studies, better instruments to assess HRQoL, and improved level of reporting for this group of patients.

BACKGROUND: Various studies in oncological/neurological patients highlight that informal caregivers suffer from a significant disease burden. We aimed to assess the meningioma caregiver burden, and its effects on caregivers health-related quality of life (HRQoL), and levels of anxiety and depression. METHODS: In a multicentre cross-sectional study informal caregivers of intracranial meningioma patients at a median of 10 years after their last anti-tumour therapy were included. Informal caregivers were family members or close friends and completed the caregiver disease burden scale, SF-36 (HRQoL) and the Hospital Anxiety and Depression Scale. Caregiver burden was assessed as an independent determinant for caregivers HRQoL, and levels of anxiety and depression with multivariable analysis correcting for relevant confounders. Participant recruitment is still in progress. RESULTS: 110 informal caregivers were included (mean age: 64.5, female: 37.2%). Informal caregivers reported any caregiver burden in 35.2% of cases, and clinically relevant burden in 15.7%. More specifically, 20.4% of caregivers suffered from stress, 11.2% from social isolation, 13.0% from feelings of disappointment, 21.0% from emotional problems, and 12.0% from environmental factors complicating the care for the patient. The total caregiver burden score was significantly associated with decreased HRQoL on 6/8 scales and 2/2 component scores: physical function (=-6.53, p=0.071), role limitation due to physical problems (=-13.62, p=0.041), bodily pain (=-13.11, p=0.014), social function (=-11.87, p=0.001), mental health (=-14.32, p

OBJECTIVE: Most Spheno-Orbital Meningioma (SOM) series include patients over a period of multiple decades, while surgical techniques have improved over the years. In addition, predictors of visual outcomes and progression free survival (PFS) have not yet been systemically assessed. The aim of this study was to assess predictors of visual outcomes and PFS in a recent SOM cohort. METHODS: Consecutive patients operated by a team of a neurosurgeon and orbital surgeon in the Leiden University Medical Center between June 2015-December 2017 were included. Pre- and postoperative visual acuity (Snellen chart), visual field deficit (Humphrey field analyser, in decibel [dB]), and relative proptosis (exophthalmometry) were compared with the Wilcoxon signed-rank test. Predictors of visual outcomes were assessed with linear regression analysis. Predictors of PFS (definition: need for reintervention) with the log-rank test. RESULTS: Eight patients presented with impaired visual acuity, which improved in 88% (preoperative: 0.8, postoperative: 1.1, p=0.012). All 16 patients presented with visual field deficits, which improved in 86% (preoperative: -8.4dB, postoperative: -3.8dB, p=0.008). Also all patients presented with proptosis, which improved in 86% (preoperative: 4.5mm, postoperative: 2.9mm, p=0.013) Strongest predictors for postoperative visual acuity, visual field deficits and persistent proptosis were preoperative visual acuity (p=0.001), visual field (p

BACKGROUND: Meningioma patients suffer from short- and long-term neurological sequelae and impaired health-related quality of life (HRQoL). However, it is unknown how these impairments affect patients’ work productivity and healthcare consumption on the long-term. MATERIAL AND METHODS: In a multicentre cross-sectional study intracranial meningioma patients of working age (18–67 years) at a median of 10.0 years after anti-tumour therapy were included. Patients completed a validated questionnaire on work productivity (SF-HLQ), and a study-specific questionnaire on healthcare consumption. One-sample t-test was used to compare meningioma patients with normative data of the Dutch population. Generalised linear models were used to compare meningioma patients with a control population, corrected for: age, sex, educational level and comorbidity. Patient recruitment and data collection is still in progress. RESULTS: 106 meningioma patients were included (mean age: 57.7 years, WHO grade I: 93.5%, surgery: 94.2%, radiotherapy: 17.5%). Meningioma patients had a paid job in 48.1% of cases, compared with 71.8% of the Dutch population of working age (p

BACKGROUND: Meningioma are common benign intracranial tumours, that can cause severe neurological and daily functional problems, sometimes requiring lifelong care and support. Current practice and guidelines lack focus on these long-term sequelae. Value-Based Healthcare (VBHC) initiatives aim to increase the value of care for patients, but continuous evaluation and improvement of these initiatives is required. According to the Plan-Do-Study-Act (PDSA) cycle, a model for continuous healthcare evaluation and improvement, we explored issues in meningioma care trajectories, possible high impact initiatives to improve these issues, and the implementability of these initiatives. MATERIAL AND METHODS: Previously, issues in the meningioma care trajectories were identified through a survey by The Netherlands Comprehensive Cancer Organisation. Using a grounded theory approach, a thematic framework was constructed based on this data and used for further data collection through three semi-structured interviews with patient-partner dyads (i.e. pairs) and four focus groups with patient-partner dyads and healthcare providers (both two focus groups). RESULTS: Issues in meningioma care trajectories reported by patient-partner dyads and healthcare providers were related to information, care and support, logistics, and diagnostics and treatment. Most important issues were lack of information about intervention and outcomes, and lack of support after treatment. A reported solution for many issues was the incorporation of a case manager. Other possible solutions were implementation of routine use of patient-reported outcome measures (PROMs) or a rehabilitation program, and formalization of these care trajectories. The most important barriers for these solutions were budget, capacity, ICT infrastructure, qualified personnel, and know-how. CONCLUSION: Implementation of a few simple solutions (e.g. case manager) may improve the majority of experienced issues in meningioma care trajectories. Information on the identified barriers and facilitators can be used to ensure successful implementation of these practice changing initiatives, which need iterative evaluation in PDSA cycles.

Background:A vast number of generic and disease specific questionnaires are used to measure health-related quality of life (HRQoL) in meningioma research. We aimed to assess the relevance of issues mentioned in these questionnaires and to compare the patient’s perspective with the perspective of the health care professional (HCP) on meningioma-related symptoms and problems.Methods:A systematic literature search was conducted to identify all HRQoL items and questionnaires. Both patients and HCPs had to rate the relevance of each item on a 4-point Likert scale (ranging from ‘not at all’ to ‘very much’): items were relevant when ≥ 30% of patients or HCPs scored the items as relevant. For each questionnaire the percentage of relevant items was assessed. All identified items were categorized into different domains of HRQoL, which were discussed in semi-structured interviews with both groups. The aim of these interviews was to reveal all issues of meningioma patients, including issues not present in the existing questionnaires.Results:Included in this study were 14 patients (mean age 56 years, 71% female) and 7 HCPs (2 neurosurgeons, 2 neurologists, 2 radiotherapists, 1 rehabilitation specialist, mean experience 15 years). Fourteen different questionnaires were found in the literature, including 140 unique issues. Patients and HCPs considered 25–60% and 90–100% of the items of each questionnaire as relevant, respectively. When comparing the 12 most relevant issues as assessed by meningioma patients and HCPs, only 5 issues were the same. Issues missing in the already existing questionnaires were mostly issues in the psychological and cognitive domains (e.g. multitasking and stress-management).Conclusion:Existing HRQoL questionnaires do not fully cover the problems of meningioma patients. Patients and HCPs differ in opinion what the most relevant issues are of meningioma patients. Both findings support the need to develop and validate an HRQoL questionnaire specific for meningioma patients.