[A boy with a painful lump in the right inguinal region]. / Een jongen met pijnlijke zwelling in lies.

A 6-year-old male, with no history of importance, was seen in the Emergency Department, presenting with a painful lump in the right inguinal region since four days. An ultrasound revealed a torsion of an ectopical testis. Surgery showed a necrotic right testicle and a right orchiectomy was performed.

Glioma patient-reported outcomes: patients and clinicians.

INTRODUCTION: Routine assessment of patient-reported outcomes (PROs) in oncology has shown to improve the quality of the delivered care and to prolong survival. However, for successful implementation of routine assessment of PROs, more knowledge on their usability in clinical practice is needed. OBJECTIVE: This study aimed to cross-sectionally assess the perspective of patients and clinicians on the practicality of routinely measuring PROs in clinical practice for glioma patients. METHODS: Semistructured interviews were conducted evaluating the role of healthcare professionals (HCP) in discussing results of PRO measures (PROMs), and the preferred topics, methods and frequency of PRO assessment. Glioma patients, their proxies and HCPs involved in the treatment of glioma patients from eight centres in the Netherlands were included. RESULTS: Twenty-four patients, 16 proxies and 35 HCPs were interviewed. The majority of patients, proxies and HCPs (92%, 81% and 80%, respectively) were willing to discuss PRO results during consultations. Although HCPs prefer that results are discussed with the nurse specialist, only one-third of patients/proxies agreed. Functioning of daily life was considered important in all three groups. Most participants indicated that discussion of PROM results should take place during standard follow-up visits, and completed at home about 1 week in advance. On group level, there was no preference for administration of questionnaires on paper or digitally. Lastly, all centres had staff available to send questionnaires on paper. CONCLUSION: This study shows that routine assessment of PROs is desired by patients, proxies and HCP's in neuro-oncological care in Dutch hospitals.

Advance care planning (ACP) in glioblastoma patients: Evaluation of a disease-specific ACP program and impact on outcomes.

Background: The feasibility of implementing an advance care planning (ACP) program in daily clinical practice for glioblastoma patients is unknown. We aimed to evaluate a previously developed disease-specific ACP program, including the optimal timing of initiation and the impact of the program on several patient-, proxy-, and care-related outcomes. Methods: The content and design of the ACP program were evaluated, and outcomes including health-related quality of life (HRQoL), anxiety and depression, and satisfaction with care were measured every 3 months over 15 months. Results: Eighteen patient-proxy dyads and two proxies participated in the program. The content and design of the ACP program were rated as sufficient. The preference for the optimal timing of initiation of the ACP program varied widely, however, most of the participants preferred initiation shortly after chemoradiation. Over time, aspects of HRQoL remained stable in our patient population. Similarly, the ACP program did not decrease the levels of anxiety and depression in patients, and a large proportion of proxies reported anxiety and/or depression. The needed level of support for proxies was relatively low throughout the disease course, and the level of feelings of caregiver mastery was relatively high. Overall, patients were satisfied with the provided care over time, whereas proxies were less satisfied in some aspects. Conclusions: The content and design of the developed disease-specific ACP program were rated as satisfactory. Whether the program has an actual impact on patient-, proxy-, and care-related outcomes proxies remain to be investigated.

Research Objectives, Statistical Analyses and Interpretation of Health-Related Quality of Life Data in Glioma Research: A Systematic Review.

BACKGROUND: Health-related quality of life (HRQoL) has become an increasingly important patient-reported outcome in glioma studies. Ideally, collected HRQoL data should be exploited to the full, with proper analytical methods. This systematic review aimed to provide an overview on how HRQoL data is currently evaluated in glioma studies, focusing on the research objectives and statistical analyses of HRQoL data. METHODS: A systematic literature search in the databases PubMed, Embase, Web of Science and Cochrane was conducted up to 5 June 2020. Articles were selected based on predetermined inclusion criteria and information on study design, HRQoL instrument, HRQoL research objective and statistical methods were extracted. RESULTS: A total of 170 articles describing 154 unique studies were eligible, in which 17 different HRQoL instruments were used. HRQoL was the primary outcome in 62% of the included articles, and 51% investigated ≥1 research question with respect to HRQoL, for which various analytical methods were used. In only 42% of the articles analyzing HRQoL results over time, the minimally clinical important difference was reported and interpreted. Eighty-six percent of articles reported HRQoL results at a group level only, and not at the individual patient level. CONCLUSION: Currently, the assessment and analysis of HRQoL outcomes in glioma studies is highly variable. Opportunities to maximize information obtained with HRQoL data include appropriate and complementary analyses at both the group and individual level, comprehensive reporting of HRQoL results in separate articles or supplementary material, and adherence to existing guidelines about the assessment, analysis and reporting of patient-reported outcomes.

The Impact of the Timing of Health-Related Quality of Life Assessments on the Actual Results in Glioma Patients: A Randomized Prospective Study.

BACKGROUND: The aim of this study was to explore the impact of the timing of Health-Related Quality of Life (HRQoL) measurements in clinical care on the obtained HRQoL scores in glioma patients, and the association with feelings of anxiety or depression. METHODS: Patients completed the European Organisation for Research and Treatment of Cancer (EORTC)'s Quality of Life Questionnaires (QLQ-C30 and QLQ-BN20), and the Hospital Anxiety and Depression Scale (HADS) twice. All patients completed the first measurement on the day of the Magnetic Resonance Imaging (MRI) scan (t = 0), but the second measurement (t = 1) depended on randomization; Group 1 (n = 49) completed the questionnaires before and Group 2 (n = 51) after the consultation with the physician. RESULTS: median HRQoL scale scores on t0/t1 and change scores were comparable between the two groups. Between 8-58% of patients changed to a clinically relevant extent (i.e., ≥10 points) on the evaluated HRQoL scales in about one-week time, in both directions, with only 3% of patients remaining stable in all scales. Patients with a stable role functioning had a lower HADS anxiety change score. The HADS depression score was not associated with a change in HRQoL. CONCLUSIONS: Measuring HRQoL before or after the consultation did not impact HRQoL scores on a group level. However, most patients reported a clinically relevant difference in at least one HRQoL scale between the two time points. These findings highlight the importance of standardized moments of HRQoL assessments, or patient-reported outcomes in general, during treatment and follow-up in clinical trials.

Prediagnostic symptoms and signs of adult glioma: the patients' view.

BACKGROUND: Little is known about the symptoms glioma patients experience in the year before diagnosis, either or not resulting in health care usage. This study aimed to determine the incidence of symptoms glioma patients experienced in the year prior to diagnosis, and subsequent visits to a general practitioner (GP). METHODS: Glioma patients were asked to complete a 30-item study-specific questionnaire focusing on symptoms they experienced in the 12 months before diagnosis. For each indicated symptom, patients were asked whether they consulted the GP for this issue. RESULTS: Fifty-nine patients completed the questionnaires, 54 (93%) with input of a proxy. The median time since diagnosis was 4 months (range 1-12). The median number of symptoms experienced in the year before diagnosis was similar between gliomas with favourable and poor prognosis, i.e. 6 (range 0-24), as were the five most frequently mentioned problems: fatigue (n = 34, 58%), mental tiredness (n = 30, 51%), sleeping disorder (n = 24, 41%), headache (n = 23, 39%) and stress (n = 20, 34%). Twenty-six (44%) patients visited the GP with at least one issue. Patients who did consult their GP reported significantly more often muscle weakness (11 vs 3, p = 0.003) than patients who did not, which remained significant after correction for multiple testing, which was not the case for paralysis in hand/leg (10 vs 4), focussing (11 vs 6) or a change in awareness (9 vs 4). CONCLUSIONS: Glioma patients experience a range of non-specific problems in the year prior to diagnosis, but only patients who consult the GP report more often neurological problems.

Prediagnostic presentations of glioma in primary care: a case-control study.

Aim: This study aimed to assess the prevalence of symptoms glioma patients may present with to the general practitioner, and whether these can be distinguished from patients with other CNS disorders or any other condition. Methods: Glioma patients were matched to CNS patients and 'other controls' using anonymized general practitioner registries. Prevalences were evaluated in the 5 years prior to diagnosis. Result: CNS patients reported significantly more motor symptoms in the period 60-24 months, (p = 0.039). Moreover, <6 months before diagnosis CNS patients differed significantly in mood disorders/fear compared with 'other controls' (p = 0.012) but not glioma patients (p = 0.816). Conclusion: Glioma patients could not be distinguished from both control groups with respect to the number or type of prediagnostic symptoms.

Health-related quality of life of cranial WHO grade I meningioma patients: are current questionnaires relevant?

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.

Impaired health-related quality of life in meningioma patients-a systematic review.

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.