Unmet needs in people with high-grade glioma: Defining criteria for stepped care intervention.

BACKGROUND: We aimed to define levels of unmet supportive care needs in people with primary brain tumour and reach expert consensus on feasibility of addressing patients' needs in clinical practice. METHODS: We conducted secondary analysis of a prospective cohort study of people diagnosed with high-grade glioma (n = 116) who completed the Supportive Care Needs Survey-SF34 during adjuvant chemoradiation therapy. Participants were allocated to one of three categories: no need ('no need' for help on all items), low need ('low need' for help on at least one item, but no 'moderate' or 'high' need), or moderate/high need (at least one 'moderate' or 'high' need indicated). Clinical capacity to respond to the proportion of patients needing to be prioritised was assessed. RESULTS: Overall, 13% (n = 5) were categorised as no need, 23% (n = 27) low need, and 64% (n = 74) moderate/high need. At least one moderate/high need was reported in the physical and daily living domain (42%), and psychological (34%) domain. In recognition of health system capacity, the moderate/high need category was modified to distinguish between: moderate need ('moderate' need indicated for at least one item but 'high' need was not selected for any item) and high need (at least one 'high' need indicated). Results revealed 24% (n = 28) moderate need and 40% (n = 46) high need. Those categorised as high need indicated needing assistance navigating the health system and information. CONCLUSIONS: Using four step allocations resulted in 40% of patients indicating high need. Categories may facilitate appropriate triaging, and guide stepped models of healthcare delivery.

Exploring the clinical utility of a brief screening measure of unmet supportive care needs in people with high-grade glioma.

Background: People living with high-grade glioma (HGG) have diverse and complex needs. Screening aims to detect patients with some level of unmet need requiring triaging and further assessment. However, most existing measures of unmet need are not suitable for screening in this population due to their length. We aimed to explore the clinical utility of a brief screening tool (SCNS-ST9) in people with HGG in detecting unmet needs. Methods: Secondary analysis of data collected in a prospective cohort study of 116 people with HGG who completed the Supportive Care Needs Survey (SCNS-SF34) and a brain cancer-specific needs survey (BrTSCNS) during chemoradiation (T1) and 6 months later (T2). The SCNS-ST9 contains a subset of 9 items from the SCNS-SF34. Data analysis determined the number of individuals with unmet needs on the SCNS-SF34 and the BrTSCNS, not identified as having some level of need by the SCNS-ST9. Results: Overall, 3 individuals (T1: 2.6% [3/116]; T2: 4.8% [3/63]) at each time point reported other unmet needs on the SCNS-SF34 that were missed by the SCNS-ST9. Domain-specific screening items missed a higher proportion of individuals (3.2%-26%), particularly in the psychological and health systems domains. Only 1 individual with brain cancer-specific needs was missed by SCNS-ST9 overall. Conclusion: Findings demonstrate the sensitivity and clinical utility of a brief screening tool (SCNS-ST9) of unmet needs in people with HGG. Routine use of this screening tool, supported by clinical pathways, may improve access to support services, potentially reducing the burden of disease for these patients.

Screening for Psychological Distress in Adult Primary Brain Tumor Patients and Caregivers: Considerations for Cancer Care Coordination.

INTRODUCTION: This study aimed to assess psychological distress (PD) as scored by the Distress Thermometer (DT) in adult primary brain tumor patients and caregivers (CGs) in a clinic setting and ascertain if any high-risk subgroups for PD exist. MATERIAL AND METHODS: From May 2012 to August 2013, n = 96 patients and n = 32 CG underwent DT screening at diagnosis, and a differing cohort of n = 12 patients and n = 14 CGs at first recurrence. Groups were described by diagnosis (high grade, low grade, and benign) and English versus non English speaking. Those with DT score ≥4 met caseness criteria for referral to psycho-oncology services. One-way ANOVA tests were conducted to test for between-group differences where appropriate. RESULTS: At diagnosis and first recurrence, 37.5 and 75.0% (respectively) of patients had DT scores above the cutoff for distress. At diagnosis, 78.1% of CGs met caseness criteria for distress. All CGs at recurrence met distress criterion. Patients with high-grade glioma had significantly higher scores than those with a benign tumor. For patients at diagnosis, non English speaking participants did not report significantly higher DT scores than English speaking participants. DISCUSSION: Psychological distress is particularly elevated in CGs and in patients with high-grade glioma at diagnosis. Effective PD screening, triage, and referral by skilled care coordinators are vital to enable timely needs assessment, psychological support, and effective intervention.