Abstract:
:The purpose of this study is to identify the needs of brain tumor patients and their caregivers to provide improved health services to these populations. Two different questionnaires were designed for patients and caregivers. Both questionnaires contained questions pertaining to three realms: disease symptoms/treatment, health care provider, daily living/finances. The caregivers' questionnaires contained an additional domain on emotional needs. Each question was evaluated for the degree of importance and satisfaction. Exploratory analyses determined whether baseline characteristics affect responder importance or satisfaction. Also, areas of high agreement/disagreement in satisfaction between the participating patient-caregiver pairs were identified. Questions for which >50% of the patients and caregivers thought were "very important" but >30% were dissatisfied include: understanding the cause of brain tumors, dealing with patients' lower energy, identifying healthful foods and activities for patients, telephone access to health care providers, information on medical insurance coverage, and support from their employer. In the emotional realm, caregivers identified 9 out of 10 items as important but need further improvement. Areas of high disagreement in satisfaction between participating patient-caregiver pairs include: getting help with household chores (P value = 0.006) and finding time for personal needs (P value < 0.001). This study provides insights into areas to improve services for brain tumor patients and their caregivers. The caregivers' highest amount of burden is placed on their emotional needs, emphasizing the importance of providing appropriate medical and psychosocial support for caregivers to cope with emotional difficulties they face during the patients' treatment process.
journal_name
J Neurooncoljournal_title
Journal of neuro-oncologyauthors
Parvataneni R,Polley MY,Freeman T,Lamborn K,Prados M,Butowski N,Liu R,Clarke J,Page M,Rabbitt J,Fedoroff A,Clow E,Hsieh E,Kivett V,Deboer R,Chang Sdoi
10.1007/s11060-011-0534-4subject
Has Abstractpub_date
2011-09-01 00:00:00pages
737-44issue
3eissn
0167-594Xissn
1573-7373journal_volume
104pub_type
杂志文章abstract:PURPOSE:White matter changes (WMCs) can develop following systemic chemotherapy in patients with primary central nervous system lymphomas (PCNSLs), but the frequency and extent of these changes is not well characterized. This single center retrospective semi-quantitative study was performed to determine the rate, timin...
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journal_title:Journal of neuro-oncology
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更新日期:2016-12-01 00:00:00
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journal_title:Journal of neuro-oncology
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更新日期:2014-01-01 00:00:00
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更新日期:2020-07-01 00:00:00
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journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1023/a:1006120623949
更新日期:1999-02-01 00:00:00
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pub_type: 杂志文章
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更新日期:2008-06-01 00:00:00
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更新日期:2017-05-01 00:00:00
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journal_title:Journal of neuro-oncology
pub_type: 杂志文章,多中心研究
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更新日期:2011-05-01 00:00:00
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pub_type: 杂志文章,评审
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更新日期:1996-03-01 00:00:00
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