脑肿瘤患者及其护理人员未满足的支持性护理需求及对服务的兴趣。

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

作者信息

Janda Monika, Steginga Suzanne, Dunn Jeff, Langbecker Danette, Walker David, Eakin Elizabeth

机构信息

School of Public Health, Queensland University of Technology, Brisbane, Queensland, Australia.

出版信息

Patient Educ Couns. 2008 May;71(2):251-8. doi: 10.1016/j.pec.2008.01.020. Epub 2008 Mar 7.

DOI:10.1016/j.pec.2008.01.020

PMID:18329220

Abstract

OBJECTIVES

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.

METHODS

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).

RESULTS

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.

CONCLUSION

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.

PRACTICE IMPLICATIONS

Interventions for this group should integrate lifestyle, coping support, and neuropsychological rehabilitation.

摘要

目的

评估脑肿瘤患者及其照料者的支持性护理需求以及对相关服务的兴趣，并将未满足需求的程度与其他癌症人群进行比较。

方法

2005年，向363户订阅昆士兰癌症基金脑肿瘤支持服务的家庭发放了一份横断面调查问卷。总体而言，75名患者和70名照料者（回复率29.8%）返回了完整的问卷。测量工具包括支持性护理需求调查问卷（SCNS - 34）以及针对患者和照料者的脑肿瘤特定子量表，还有医院焦虑抑郁量表（HADS）。

结果

患者最常报告需要支持以克服疲劳、对未来的不确定性以及无法做过去常做的事情。照料者希望得到帮助来应对对患者精神或身体恶化的恐惧、照料对自身生活的影响以及减轻患者生活中的压力。在患者中，30%在HADS上报告有焦虑情绪，17%报告有抑郁情绪，而照料者的相应比例分别为40%和10%。支持性护理需求高于平均水平的患者和/或照料者对支持服务表现出更大兴趣，例如那些改善身体活动、更有效地利用社区服务以及管理压力的服务。更大的情绪困扰预示着更高的支持性护理需求（例如，抑郁患者的优势比 = 2.11；（95%置信区间1.10 - 4.03），而在患者或照料者的人口统计学特征、患者自我报告的医疗状况与高于平均水平的支持性护理需求之间未发现关联。