Unmet supportive care needs and interest in services among patients with a brain tumour and their carers
ABSTRACT 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.
- SourceAvailable from: Anna K Nowak
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- "financial, parking, transport, respite, etc.). The BrTSCNS is a validated 16-item tool developed specifically for brain cancer patients . It has a similar structure to the SCNS- 34 and is designed to be co-administered with this scale. "
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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- "While several studies have investigated the supportive care needs of cancer patients worldwide, most are conducted in Western countries. Few studies have investigated the supportive care needs of cancer patients in non-Western setting. "
ABSTRACT: Background: Assessment of supportive needs is the requirement to plan any supportive care program for cancer patients. There is no evidence about supportive care needs of Iranian breast cancer patients. So, the aims of present study were to investigate this question and s predictive factors. Materials and methods: A descriptive- correlational study was conducted, followed by logistic regression analyses. The Supportive Care Needs Survey was completed by 136 breast cancer patients residing in Iran following their initial treatment. This assessed needs in five domains: psychological, health system and information, physical and daily living, patient care and support, and sexuality. Results: Patient perceived needs were highest in the health systems and information (71%), and physical and daily living (68%) domains. Logistic regression modeling revealed that younger participants have more un-met needs in all domains and those with more children reported fewer un-met needs in patient care and support domains. In addition, married women had more un-met supportive care needs related to sexuality. Conclusions: The high rate of un-met supportive care needs in all domains suggests that supportive care services are desperately required for breast cancer patients in Iran. Moreover, services that address informational needs and physical and daily living needs ought to be the priority, with particular attention paid to younger women. Further research is clearly needed to fully understand supportive care needs in this cultural context.Asian Pacific journal of cancer prevention: APJCP 05/2014; 15(9):3933-8. DOI:10.4103/0973-1075.138400 · 2.51 Impact Factor
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- "It determines carers unmet needs and prioritizes health-care resources. The scale has been validated with carers of cancer patients [46,47]. "
ABSTRACT: Carers provide extended and often unrecognized support to people with cancer. The aim of this study is to test the hypothesis that excessive carer burden is modifiable through a telephone outcall intervention that includes supportive care, information and referral to appropriate psycho-social services. Secondary aims include estimation of changes in psychological health and quality of life. The study will determine whether the intervention reduces unmet needs among patient dyads. A formal economic program will also be conducted.Methods/design: This study is a single-blind, multi-centre, randomized controlled trial to determine the efficacy and cost-efficacy of a telephone outcall program among carers of newly diagnosed cancer patients. A total of 230 carer/patient dyads will be recruited into the study; following written consent, carers will be randomly allocated to either the outcall intervention program (n = 115) or to a minimal outcall / attention control service (n = 115). Carer assessments will occur at baseline, at one and six months post-intervention. The primary outcome is change in carer burden; the secondary outcomes are change in carer depression, quality of life, health literacy and unmet needs. The trial patients will be assessed at baseline and one month post-intervention to determine depression levels and unmet needs. The economic analysis will include perspectives of both the health care sector and broader society and comprise a cost-consequences analysis where all outcomes will be compared to costs. This study will contribute to our understanding on the potential impact of a telephone outcall program on carer burden and provide new evidence on an approach for improving the wellbeing of carers.Trial registration: Australian New Zealand Clinical Trials Registry ACTRN: 12613000731796.BMC Health Services Research 01/2014; 14(1):5. DOI:10.1186/1472-6963-14-5 · 1.71 Impact Factor