Journal
JOURNAL OF NEURO-ONCOLOGY
Volume 127, Issue 1, Pages 91-102Publisher
SPRINGER
DOI: 10.1007/s11060-015-2013-9
Keywords
Brain tumors; Supportive care needs; Community services; Neuro-oncology; Quality of life; Service delivery
Categories
Funding
- Institute of Health & Biomedical Innovation Early Career Researcher Scheme grant
- National Health and Medical Research Council (NHMRC) Early Career Research Fellowship [1072061]
- National Health and Medical Research Council of Australia [1072061] Funding Source: NHMRC
Ask authors/readers for more resources
Primary brain tumors are associated with significant physical, cognitive and psychosocial changes. Although treatment guidelines recommend offering multi-disciplinary 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.
Authors
I am an author on this paper
Click your name to claim this paper and add it to your profile.
Reviews
Recommended
No Data Available