**Background:** Primary brain tumors have a profound impact on patients and their family caregivers due to physical limitations, neurocognitive issues, and behavioral changes. Caregivers often feel overwhelmed and underprepared, reporting fatigue, financial distress, social isolation, and depression. While caregiver burden and unmet needs are well-documented, little research distinguishes between having an unmet need and actually wishing for support. This study aimed to (1) identify the presence and magnitude of unmet needs in family caregivers of primary brain tumor patients; (2) examine associations between unmet needs and wish for support; and (3) gauge acceptability and feasibility of the Caregiver Needs Screen (CNS) for clinical use.
**Methods:** This was a single-center, cross-sectional mixed-methods study conducted between January and August 2016. Patient-caregiver dyads were recruited from the Edinburgh Centre for Neuro-Oncology. Inclusion criteria: primary brain tumor (any type), both patient and caregiver over 16 years old, caregiver was the primary provider of emotional and/or physical support. Exclusion criteria: insufficient English to complete outcomes, or either party did not sign informed consent. Caregivers completed an adapted CNS (33 items, 0–10 distress scale) with tick-boxes for wish for support (yes/no), plus a study-specific evaluation questionnaire (7-point Likert scale). Sociodemographic data were collected via questionnaire; clinical data were extracted from medical records. Descriptive statistics, point-biserial correlations, and non-parametric tests (Mann–Whitney U, Kruskal-Wallis) were used. Inductive thematic analysis was applied to free-text responses.
**Key Results:** Of 179 invited dyads, 89 (49.7%) consented and 71 (79.8% of consenting) completed the study. Caregivers' mean age was 55.4 years (SD = 13.2); 60.6% were female; 68.6% were spouses. Patient diagnoses included astrocytoma (28.2%), glioblastoma (19.7%), and meningioma (19.7%). Caregivers reported a mean of 17.20 unmet needs out of 33 (SD = 7.98), but only a mean of 5.82 wishes for support (SD = 6.96, range 0–28). The most distressing items were: changes in memory/concentration (M = 5.75, SD = 3.29; subset N = 29), fatigue (M = 5.58, SD = 3.43), and recognizing disease progression (M = 5.23, SD = 3.15). The most common wish for support was for recognizing disease progression (N = 24, 34.78%), and the least common was managing spiritual issues (N = 0). The overall correlation between total unmet needs and total wish for support was weak (r = 0.296, P = .014). Item-level correlations ranged from r_pb = .185 (changes in memory/concentration) to r_pb = .58 (lack of appetite). No significant associations were found between unmet needs or wish for support and caregiver age, sex, relationship to patient, tumor grade, or disease stage (all P > .05). The CNS was rated positively: mean scores ranged from 4.19 to 6.21 out of 7. Highest ratings were for no inconsistencies (M = 6.21, SD = 1.07), not having more questions than necessary (M = 6.10, SD = 1.20), and ease of use (M = 5.98, SD = 1.25). Mean completion time was 12.2 minutes (SD = 6.7). Preferred support delivery methods were mixed (30.0% preferred a combination), and 53.3% wanted information from a doctor or nurse. Free-text responses highlighted future concerns (31.0%) and communication of diagnosis/treatment/symptoms (26.0%) as key themes.
**Clinical Implications:** Unmet needs persist in neuro-oncology caregivers despite growing awareness. The weak correlation between unmet needs and wish for support underscores the importance of assessing both dimensions separately in clinical practice, rather than assuming distress automatically indicates a desire for intervention. The CNS is a pragmatic, neuro-oncology-specific tool that was rated as acceptable and feasible by caregivers, with completion times averaging 12 minutes. Routine use of the CNS could help clinicians identify individual caregivers' priorities and tailor support or referrals accordingly. Limitations include the single-center design, moderate consent/completion rates (49.7%/42.3%), and use of a pre-validation adapted CNS. Future efforts should focus on caregiver subgroups with very high support needs and implement routine screening as part of integrated care.