Journal of Neuro-Oncology

, Volume 127, Issue 1, pp 91–102 | Cite as

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

Clinical Study
First Online:
Received:
Accepted:

Abstract

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.

Keywords

Brain tumors Supportive care needs Community services Neuro-oncology Quality of life Service delivery 
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Notes

Acknowledgments

This study was funded by a 2012 Institute of Health & Biomedical Innovation Early Career Researcher Scheme grant. Dr Danette Langbecker is supported by a National Health and Medical Research Council (NHMRC) Early Career Research Fellowship (1072061). The contents of the published material are solely the responsibility of the Administering Institution, a Participating Institution, or individual authors and do not reflect the views of the NHMRC. The authors would like to thank the Queensland Cancer Registry and Kate Hunt for assistance with data collection, and all the patients and caregivers who participated in this study.

Compliance with ethical standards

Conflict of Interest

The authors declare that they have no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Supplementary material

11060_2015_2013_MOESM1_ESM.docx (24 kb)
Supplementary material 1 (DOCX 24 kb)

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Copyright information

© Springer Science+Business Media New York 2015

Authors and Affiliations

  1. 1.Institute of Health and Biomedical InnovationQueensland University of TechnologyKelvin GroveAustralia

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