Abstract
The psycho-oncological burden related to the diagnosis of an intracranial tumor is often accompanied by neurocognitive deficits and changes in character, overall affecting health-related quality of life (HRQoL) and activities of daily living. Regular administration of adequate screening tools is crucial to ensure a timely detection of needs for support and/or specific interventions. Although efforts have been made to assure the quality of neuro-oncological care, clinical assessment practice of patient-reported outcomes (PROs) remains overall heterogeneous, calling for a concise recommendation tailored to neuro-oncological patients. Therefore, this survey, promoted by the German Society of Neurosurgery, was conducted to evaluate the status quo of health care resources and PRO/neurocognition assessment practices throughout departments of surgical neuro-oncology in Germany. 72/127 (57%) of registered departments participated in the study, including 83% of all university hospital units. A second aim was to shed light on the impact of quality assurance strategies (i.e., department certification as part of an integrative neuro-oncology cancer center; CNOC) on the assessment practice, controlled for interacting structural factors, i.e., university hospital status (UH) and caseload. Despite an overall good to excellent availability of relevant health care structures (psycho-oncologist: 90%, palliative care unit: 97%, neuropsychology: 75%), a small majority of departments practice patient-centered screenings (psycho-oncological burden: 64%, HRQoL: 76%, neurocognition: 58%), however, much less frequently outside the framework of clinical trials. In this context, CNOC affiliation, representing a specific health care quality assurance process, was associated with significantly stronger PRO assessment practices regarding psycho-oncological burden, independent of UH status (common odds ratio=5.0, p=0.03). Nevertheless, PRO/neurocognitive assessment practice was not consistent even across CNOC. The overall most commonly used PRO/neurocognitive assessment tools were the Distress Thermometer (for psycho-oncological burden; 64%), the EORTC QLQ-C30 combined with the EORTC QLQ-BN20 (for HRQoL; 52%) and the Mini-Mental Status Test (for neurocognition; 67%), followed by the Montreal Cognitive Assessment (MoCA; 33%). Accordingly, for routine clinical screening, the authors recommend the Distress Thermometer and the EORTC QLQ-C30 and QLQ-BN20, complemented by the MoCA as a comparatively sensitive yet basic neurocognitive test. This recommendation is intended to encourage more regular, adequate, and standardized routine assessments in neuro-oncological practice.
Highlights
The diagnosis of an intracranial tumor confronts patients on the one hand with the burden of an oncological disease, but on the other hand with neurocognitive deficits and changes in character, which overall affect health-related quality of life (HRQoL) and activities of daily living
The survey contained 28 multiple- and single-choice questions divided into four sections, mainly covering the following points: (i) center organization (CNOC, university hospital [UH], specialized neuro-oncologic outpatient clinic, caseload); (ii) health care structure; (iii) HRQoL assessment; (iv) assessment of psycho-oncological burden, depression, and anxiety; (v) assessment of neurocognition
30 (42%) of the participating departments were part of UHs, as opposed to 37 (51%) university-affiliated teaching hospitals, and 5 (7%) district hospitals without university affiliation. 35 departments (49%) were part of certified neuro-oncology centers (CNOC), and 60 departments (86%) declared to run a specialized neuro-oncologic outpatient clinic with a median caseload of 250 neuro-oncological consultations per year. This implies that this survey included 83% of all 36 German UHs running a neurosurgical unit and 76% of all 46 German CNOCs
Summary
The diagnosis of an intracranial tumor confronts patients on the one hand with the burden of an oncological disease, but on the other hand with neurocognitive deficits and changes in character, which overall affect health-related quality of life (HRQoL) and activities of daily living. Assessment and monitoring of neurocognitive function can play an important role in therapy and disease monitoring [3]. Timely and closely followed patient-reported outcome (PRO) and performance-based assessments seem highly advisable to ensure a comprehensive neuro-oncological care, and have recently attracted increasing interest even beyond the context of clinical trials. To date there is no consensus regarding the best clinical and scientific practice of PRO and performance-based assessments in neuro-oncological patients. Clinical experience shows that the implemented standard operating procedures linked to certification have not yet reached a satisfactory level in terms of comprehensiveness and detail. A fixed screening scheme to identify all types of related support needs would be desirable as a standard operating procedure, even beyond the framework of certified neuro-oncology centers (CNOC; certified by the German Cancer Society [DKG])
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