Primary brain tumor patients’ supportive care needs and multidisciplinary rehabilitation, community and psychosocial support services: awareness, referral and utilization

Primary brain tumors are associated with significant physical, cognitive and psychosocial changes. Although treatment guidelines recommend offering multidisciplinary rehabilitation and support services to address patients’ residual deficits, the extent to which patients access such services is unclear. This study aimed to assess patients’ supportive care needs early after diagnosis, and quantify service awareness, referral and utilization. A population-based sample of 40 adults recently diagnosed with primary brain tumors was recruited through the Queensland Cancer Registry, representing 18.9 % of the eligible population of 203 patients. Patients or carer proxies completed surveys of supportive care needs at baseline (approximately 3 months after diagnosis) and 3 months later. Descriptive statistics summarized needs and service utilization, and linear regression identified predictors of service use. Unmet supportive care needs were highest at baseline for all domains, and highest for the physical and psychological needs domains at each time point. At follow-up, participants reported awareness of, referral to, and use of 32 informational, support, health professional or practical services. All or almost all participants were aware of at least one informational (100 %), health professional (100 %), support (97 %) or practical service (94 %). Participants were most commonly aware of speech therapists (97 %), physiotherapists (94 %) and diagnostic information from the internet (88 %). Clinician referrals were most commonly made to physiotherapists (53 %), speech therapists (50 %) and diagnostic information booklets (44 %), and accordingly, participants most commonly used physiotherapists (56 %), diagnostic information booklets (47 %), diagnostic information from the internet (47 %), and speech therapists (43 %). Comparatively low referral to and use of psychosocial services may limit patients’ abilities to cope with their condition and the changes they experience.