Thomas Gwilym P A, Saunders Catherine L, Roland Martin O, Paddison Charlotte A M
Cambridge Centre for Health Services Research Primary Care Unit, University of Cambridge, Cambridge, UK.
RAND Europe, Cambridge, UK.
BMC Fam Pract. 2015 May 15;16:62. doi: 10.1186/s12875-015-0277-y.
We aim to describe the health-related quality of life of informal carers and their experiences of primary care.
Responses from the 2011-12 English General Practice Patient Survey, including 195,364 informal carers, were analysed using mixed effect logistic regressions controlling for age, gender, ethnicity and social deprivation to describe carer health-related quality of life (mobility, self-care, usual activities, pain, and anxiety/depression, measured using EQ-5D) and primary care experience (access, continuity and communication).
Informal carers reported poorer health-related quality of life than non-carers of similar age, gender, ethnicity and social deprivation. Increasing caring commitment was associated with worse EQ-5D scores, with carers of 50+ hours a week scoring 0.05 points lower than non-carers (95 % CI 0.05 to 0.04), equivalent to 18 fewer days of full health annually. Considering each domain of EQ-5D separately, carers of 50+ hours/week were more likely to report pain OR = 1.53 (1.50-1.57), p < 0.0001, and anxiety/depression OR = 1.69 (1.66-1.73), p < 0.0001, than non-carers. Younger carers scored lower on EQ-5D than non-carer peers but the converse was true among over-85s. In the most deprived areas carers reported the equivalent of 37 fewer days of full health annually than carers in the most affluent areas. On average, carers reported poorer patient experiences in all areas of primary care than non-carers (odds ratios 0.84-0.97), with this difference being most marked in the domain of access.
Informal carers experience a double disadvantage of poorer health-related quality of life and poorer patient experience in primary care. We find no evidence for health benefits of caregiving. We recommend physicians identify and treat carer health problems, including pain and anxiety/depression, particularly among young, deprived and high time-commitment carers. Improving patient experience for carers, including access to primary care, should be a priority.
我们旨在描述非正式护理人员的健康相关生活质量及其初级保健体验。
对2011 - 12年英国全科医疗患者调查的回复进行分析，该调查包括195,364名非正式护理人员，使用混合效应逻辑回归，控制年龄、性别、种族和社会剥夺因素，以描述护理人员的健康相关生活质量（使用EQ - 5D测量的 mobility、自我护理、日常活动、疼痛以及焦虑/抑郁）和初级保健体验（可及性、连续性和沟通）。
与年龄、性别、种族和社会剥夺情况相似的非护理人员相比，非正式护理人员报告的健康相关生活质量较差。护理投入增加与EQ - 5D得分较低相关，每周护理时长超过50小时的护理人员得分比非护理人员低0.05分（95%置信区间为0.05至0.04），相当于每年完全健康的天数减少18天。分别考虑EQ - 5D的各个领域，每周护理时长超过50小时的护理人员比非护理人员更有可能报告疼痛（比值比 = 1.53，1.50 - 1.57，p < 0.0001）和焦虑/抑郁（比值比 = 1.69，1.66 - 1.73，p < 0.0001）。年轻护理人员的EQ - 5D得分低于同龄非护理人员，但85岁以上人群情况相反。在最贫困地区，护理人员报告每年完全健康的天数比最富裕地区的护理人员少37天。平均而言，护理人员报告在初级保健的所有领域患者体验比非护理人员差（比值比为0.84 - 0.97），这种差异在可及性领域最为明显。
非正式护理人员在健康相关生活质量较差和初级保健患者体验较差方面面临双重不利。我们没有发现护理有益健康的证据。我们建议医生识别并治疗护理人员的健康问题，包括疼痛和焦虑/抑郁，特别是在年轻、贫困和护理投入时间长的护理人员中。改善护理人员的患者体验，包括获得初级保健服务的机会，应成为优先事项。
