Unmet supportive care needs and interest in services among patients with a brain tumor and their carers

School of Public Health, Queensland University of Technology, Brisbane, Queensland, Australia.
Patient Education and Counseling (Impact Factor: 2.2). 06/2008; 71(2):251-8. DOI: 10.1016/j.pec.2008.01.020
Source: PubMed


To assess the supportive care needs and interest in related services among brain tumour patients and their carers and to compare the level of unmet needs to other cancer populations.
A cross-sectional survey was posted to 363 households who were subscribed to the Queensland Cancer Fund Brain Tumour Support Service in 2005. Overall, 75 patients and 70 carers (response rate 29.8%) returned completed questionnaires. Measures were the Supportive Care Needs Survey (SCNS-34) and a brain tumour specific subscale for patients and carers, as well as the Hospital Anxiety and Depression Scale (HADS).
Patients most frequently reported requiring support to overcome fatigue, uncertainty about the future and not being able to do the things they used to do. Carers wanted help dealing with fears about the patients mental or physical deterioration, with the impact caring had on their own life, and with reducing stress in the patient's life. Among patients, 30% reported anxious mood and 17% depressed mood on the HADS, while corresponding numbers for carers were 40% and 10%, respectively. Patients and/or carers with higher than average supportive care needs expressed greater interest in support services, such as those to improve physical activity, using community services more effectively and to manage stress. Greater emotional distress predicted higher supportive care needs (e.g. odds ratio depressed patients=2.11; (95% confidence interval 1.10-4.03), while no association was detected between patients' or carers' demographic characteristics, or patients' self-reported medical status and higher than average supportive care needs.
The level of unmet supportive care needs observed among patients with a brain tumour and their carers is similar to that observed among cancer populations with metastatic disease.
Interventions for this group should integrate lifestyle, coping support, and neuropsychological rehabilitation.

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    • "financial, parking, transport, respite, etc.). The BrTSCNS is a validated 16-item tool developed specifically for brain cancer patients [5]. It has a similar structure to the SCNS- 34 and is designed to be co-administered with this scale. "
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    ABSTRACT: Objective: To determine High Grade Glioma (HGG) patients' levels of distress and QOL during combined chemoradiotherapy, explore predictors of distress and QOL and prioritize patients' supportive care needs. Methods: Patients diagnosed with HGG who were referred for combined chemoradiotherapy were recruited. Participants completed demographics and questionnaires assessing distress, function, and supportive care needs. Descriptive statistics, correlation coefficients, t-tests and linear and logistic regression analyses were performed. Results: 116 participants completed the questionnaire. Participants scored lower for QOL in physical, functional and emotional domains than the general Australian population. Poor physical function, lower education levels, loss of employment and financial impact associated with diagnosis were consistently linked with multiple domains of distress, poor QOL and high unmet needs. Having a carer who was their partner predicted lower emotional well-being. Conclusion: Patients with HGG experience a poor QOL, increased levels of distress and high unmet needs when commencing chemoradiotherapy. Patients who experience a financial impact and those with lower education levels may report higher levels of distress and increased unmet needs. Practice implications: Poor function, lower education and limited financial resources may help identify those who require additional screening and may benefit from additional information and psychological support at this time.
    Patient Education and Counseling 01/2015; 98(4). DOI:10.1016/j.pec.2015.01.002 · 2.20 Impact Factor
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    • "Prevalence of depression among carers is significant with up to 70% experiencing depressed mood [2] [3]. Previous research has focused on the assessment of unmet needs experienced by carers during the cancer survivorship phase [4] [5] [6] [7] [8] [9] and at end-of-life stage [10] [11] [12] [13] [14]. "

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    • "While several studies have investigated the supportive care needs of cancer patients worldwide, most are conducted in Western countries.[6910111213141516] Few studies have investigated the supportive care needs of cancer patients in non-Western setting.[1718192021] "
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