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Here, we describe the development of a Dutch national guideline on metastases and hematological malignancies localized within the spine. The aim was to create a comprehensive guideline focusing on proactive management of these diseases, enabling healthcare professionals to weigh patient perspectives, life expectancy, and expected outcomes to make informed treatment recommendations. A national multidisciplinary panel consisting of clinicians, a nurse, a patient advocate, an epidemiologist, and a methodologist drafted the guideline. The important role of patients in the realization of the guideline enabled us to identify and address perceived shortcomings in patient care. The guideline covers not only metastatic epidural spinal cord compression, but also the treatment of uncomplicated metastases and hematological malignancies localized within the spine. The guideline is applicable in daily practice and provides an up-to-date and concise overview of the diagnostic and treatment possibilities for patients suffering from a disease that can have a serious impact on their quality of life. Suggestions for the practical implementation of patient care in hospitals are also provided, including approaches for pursuing proactive management. The crucial role of the patient in decision making is emphasized in this guideline.

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BACKGROUND Each year 1.300 new patients are diagnosed with a glioma in the Netherlands. Patients experience a substantial physical and cognitive decline during the course of the disease. The impact of neurological deterioration on social and family life is substantial. Caregivers give high demanding care to their partners for long periods of time, while they combine this care with many other tasks, as: care for children, administrative household tasks and securing the families financial situation through work. As a consequence caregivers experience a high burden.In this study, we evaluated the degree of caregiver burden, its impact on daily life and the preferred support needed. With better insight in caregivers needs, support for the caregivers can be optimized. MATERIAL AND METHODS The study was conducted at the Brain Tumor Center Amsterdam, the Netherlands, between March and June 2019. We prospectively collected information using two Dutch questionnaires: the “Experienced Burden of Care” (EDIZ) and the “Features of Caregiver Care” questionnaire. The questionnaires were handed out to 93 caregivers of glioma patients at the outpatient clinic. The data were analysed using descriptive statistics. RESULTS In the studied population, 36,6% of caregivers experienced a high burden (score 7–9 on EDIZ questionnaire). The features of caregiver care questionnaire showed that 11,2% was overloaded (score >31), and 57,3% nearly overloaded (score 22–30). Caregivers indicated that the continuous care for the patient and lack of time for their own needs were a major cause for the high burden they experienced. One third of the caregivers reported a substantial change in physical, mental and behavioural functioning of the patient during the study. Caregivers experienced a lack of support and information; they felt a need for more psychological support (34,9%) and advice how to deal with the cognitive and behavioural decline of the patient (33,3%). The need for information of caregivers varied, ranging from information on the course of the disease (28,6%) to information on the social support act (23,8%). The question when to receive additional information was answered by most caregivers to a ‘self-chosen point in time’ instead of set time points by the medical team. CONCLUSION The burden of caregivers of glioma patients is high; nearly 70% of caregivers are even (nearly) overloaded. Caregivers need information and support on different aspects of the disease. As these aspects vary between different caregivers and possibly during the disease course, support to caregivers should be structurally assessed. A better understanding of the caregivers needs in combination with active support could prevent dropout of caregivers and improve the quality of life of both caregivers and patients.

BACKGROUND Patients with diffuse glioma experience many tumor- and treatment-related symptoms, including fatigue, cognitive deficits, and anxiety. It remains unclear how the frequency and burden of these symptoms change over time and specifically which symptoms patients experience during the stable phase of the disease. We assessed the frequency and burden of common symptoms in glioma patients during stable disease and whether patients were willing to undergo treatment for those symptoms. We suggest a top five of potentially treatable symptoms. METHODS Patients with a diffuse glioma during stable disease completed a questionnaire on symptoms they experienced during the past two weeks, such as irritability, fatigue, stress, pain, depressive thoughts and relationship problems. They rated the frequency and burden of seventeen symptoms on a seven-point numeric scale ranging from ‘never’ to ‘continuously’ and from ‘no burden’ to ‘unbearable’, respectively. Also, they stated whether they were willing to undergo treatment for each symptom. Data was collected retrospectively. The median values of the frequency and burden dimension were calculated for each symptom. We composed a top five of most frequent and burdensome symptoms. We used Kendall’s Tau to correlate frequency, burden and willingness to undergo treatment per symptom. RESULTS Fifty-two patients were included, 77% had a KPS score of 90–100, 23% a KPS score of 70–80 and 40% had a glioblastoma. The top five most frequent and burdensome symptoms were fatigue, memory problems, reduced physical fitness, concentration problems and drowsiness. Fatigue had the highest median value on the frequency (median 4.5, IQR 2.5) and burden (median 4.0, IQR 3.00) dimension and 21% of the patients were willing to undergo treatment for fatigue. Overall 35% of the patients were willing to undergo treatment for at least one symptom. Frequency and burden of symptoms correlated well (median Kendall’s Tau of 0.84 with a range of correlations of 0.73–0.95). Frequency and willingness to undergo treatment correlated less (median Kendall’s Tau of 0.35, range 0.24–0.57), as well as burden and willingness to undergo treatment (median Kendall’s Tau, range 0.28–0.61). CONCLUSION The top five symptoms most often reported by patients with diffuse glioma during stable disease were: fatigue, memory problems, reduced physical fitness, concentration problems and drowsiness. These symptoms may serve as a roadmap for future research on treatment strategies to alleviate these symptoms. SUPPORT/DISCLOSURE This project is funded by The Anita Veldman Foundation (CCA-2019-2-21).