**Background:** Sleep disturbance negatively impacts quality of life (QoL) in people affected by cancer and may be associated with survival. While prior reviews have examined sleep in general cancer populations, people with primary brain tumours (PBT) are rarely included despite growing clinical recognition of the symptom. PBT represent approximately 1.5% of all cancers. Caregivers of PBT survivors also face physical and emotional burden that may lead to sleep disturbance. Two prior reviews (including Jeon et al., covering 1990–2015) highlighted sleep disturbance as highly prevalent and severe in PBT survivors but noted major limitations: most evidence came from single-item QoL measures, samples were small and often limited to low-grade/benign tumours post-surgery, and caregivers were excluded. This systematic review aimed to (1) examine the prevalence, severity, manifestations, and clinical associations of sleep disturbance in PBT survivors and their caregivers, and (2) determine whether any sleep-focused interventions exist for this population.
**Methods:** The review was registered with PROSPERO (CRD42022299332) and conducted per PRISMA 2020 guidelines. PubMed, EMBASE, Scopus, PsychINFO, and CINAHL were searched for articles published between September 2015 and May 2022, with additional manual searches of reference lists not limited by date. Eligible studies included those reporting sleep disturbance or interventions for sleep in adults (≥18 years) with PBT during or post-treatment, and their caregivers. Sleep assessment tools considered included validated self-report assessments, sleep recording devices, sleep diaries (≥7 cycles), and validated QoL, psychological, or symptom assessments reporting ≥1 sleep item. Two independent reviewers conducted quality appraisal using Joanna Briggs Institute (JBI) Critical Appraisal Tools. A meta-analysis was not performed due to heterogeneous samples and methodologies.
**Key Results:** Of 2,184 manuscripts screened, 34 were included (16 cross-sectional, 7 RCTs, 4 quasi-experimental, 7 cohort studies), published between 1998 and 2022. Data came from 4,694 PBT survivors and 120 caregivers, with sample sizes ranging from 12 to 621 and ages 18–86 years. PBT survivors were predominantly male (52%) and caregivers female (71%). Ten studies exclusively included high-grade glioma (HGG), seven exclusively low-grade glioma (LGG), and 17 had mixed samples. Sleep was primarily assessed via validated subjective questionnaires including the Pittsburgh Sleep Quality Index (PSQI), Insomnia Severity Index (ISI), Epworth Sleepiness Scale (ESS), Athens Insomnia Scale (AIS), General Sleep Disturbance Scale (GSDS), and Brief Sleep Disturbance Scale (BSDS). HRQoL tools included the EORTC QLQ-C30 and BN20 modules (insomnia and drowsiness subscales) and the MDASI-BT. A small number of studies used actigraphy or polysomnography (PSG).
Prevalence of sleep disturbance varied by tool: among five studies using the PSQI, three reported the percentage scoring >5 (indicating significant disturbance), estimating prevalence between 37.0% and 81.8%. One study using the GSDS reported 100% of subjects experienced sleep disturbance. Two studies using the NCCN Distress Thermometer and CTCAE reported prevalence of 33.3% and 46.8%, respectively. Mean PSQI scores across five studies ranged from 5.19±3.39 to 11.53±5.38. Of two studies reporting the ISI, one found 17.4% of PBT survivors experienced moderate insomnia and 4.1% severe insomnia. The single PSG study reported average total sleep time of 309–319 minutes (5.15–5.50 hours) per night. HRQoL studies using the MDASI-BT reported 22% prevalence of sleep disturbance and 28% for drowsiness.
Treatment modalities associated with sleep disturbance included surgical resection (associated with poorer sleep in short-term follow-up of 1–12 months, though one longitudinal LGG study found significant impairments at 12–72 months and 120+ months, p<0.05), radiotherapy (higher doses associated with more insomnia and fatigue post-radiotherapy, p=0.05), and corticosteroid use. Sleep disturbance frequently co-occurred with fatigue, drowsiness, stress, and pain. Tumour location or laterality did not appear to be associated with sleep disturbance.
No sleep-focused interventions were identified. Five intervention studies reporting sleep data were included: pharmacological (methylphenidate/modafinil — no significant improvements), cannabis (1:1 THC:CBD ratio favoured over 4:1; Fact-BR Sleep mean group difference=2.59; 95%CI 2.4–2.77; p=0.009), physical activity (a home-based aerobic exercise program showed a small between-group PSQI difference of +0.34; 95%CI −0.23–0.91; a rehab intervention showed better drowsiness scores: Intervention Mean=29.2 vs Control Mean=41.3, β=−12.1, p=0.04), and a dyadic yoga program (patient PSQI improved from 10.75±2.06 to 8.00±1.14, d=1.17, p=0.10; caregiver PSQI worsened from 10.40±3.03 to 11.20±3.03, d=0.49, p=0.34). Only one study (n=5 dyads) included caregivers.
**Clinical Implications:** Sleep disturbance is a highly prevalent symptom in PBT survivors, yet there is a striking absence of sleep-focused interventions for this population. Most evidence comes from single-item HRQoL measures rather than validated sleep-specific tools. The review highlights the need for standardized, multifaceted sleep assessment (including objective measures like PSG and actigraphy) and for interventions such as cognitive behavioural therapy (CBT), which is recommended as front-line treatment for sleep disturbance in general cancer populations but has not been studied in PBT. Preliminary evidence suggests physical activity may be beneficial for sleep, and medicinal cannabis warrants further research. The near-total exclusion of caregivers from research is a critical gap, given the unique burden of caring for someone with PBT, including managing cognitive deterioration, personality changes, and communication difficulties.