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德国临终关怀中患者及亲属对门诊和日间护理服务的偏好——一项离散选择实验

Patients' and Relatives' Preferences for Outpatient and Day Care Services Within End-of-Life Care in Germany - A Discrete Choice Experiment.

作者信息

Apolinarski Beate, de Jong Lea, Herbst Franziska A, Huperz Carolin, Röwer Hanna A A, Schneider Nils, Damm Kathrin, Stiel Stephanie

机构信息

Institute for General Practice and Palliative Care, Hannover Medical School, Hannover, Germany.

Center for Health Economics Research Hannover (CHERH), Leibniz University Hannover, Hannover, Germany.

出版信息

Patient Prefer Adherence. 2024 Feb 29;18:519-529. doi: 10.2147/PPA.S442047. eCollection 2024.

Abstract

PURPOSE

In Germany, patients with incurable chronic diseases living at home increasingly have the option of using outpatient and day care hospice and specialized palliative care services. The present study examined and compared patients' and their relatives' preferences for end-of-life outpatient and day care services.

PATIENTS AND METHODS

The study used a questionnaire integrating a discrete choice experiment. For six scenarios, participants chose between two hypothetical end-of-life care offers, described by seven attributes. The model compared place of care, frequency and duration of care and support, specialized medical palliative care, accompanied activities, and relieving patient counselling. The model also included optional overnight care and willingness to pay. Patients and the relatives of patients suffering from incurable, chronic diseases who were not yet receiving palliative care were recruited via hospitals and self-help groups (06/2021-07/2022).

RESULTS

The results were based on data from 436 questionnaires (patients: n=263, relatives: n=173). All attributes had a statistically significant impact on choice decisions, with place of care showing the greatest importance. All respondents highly preferred care in the patient's home over out-of-home care. Patients stressed the importance of special medical (palliative) care and valued accompanied activities, often facilitated by hospice volunteers. Relatives, but not patients, considered the frequency and duration of care highly relevant.

CONCLUSION

The results suggest a higher demand for care in the patient's home than for out-of-home care. Patients' and relatives' high preference for special medical care and the relief of family caregiver burden should be considered in the design of day care services.

摘要

目的

在德国,身患不治之症的慢性病居家患者越来越有机会选择使用门诊和日间护理临终关怀及专业姑息治疗服务。本研究调查并比较了患者及其亲属对临终门诊和日间护理服务的偏好。

患者与方法

本研究使用了一份整合了离散选择实验的问卷。对于六种情景,参与者要在两种假设的临终护理方案之间做出选择,这两种方案由七个属性描述。该模型比较了护理地点、护理和支持的频率及时长、专业医疗姑息治疗、陪伴活动以及为患者减轻负担的咨询服务。该模型还包括可选的过夜护理和支付意愿。通过医院和自助团体招募了尚未接受姑息治疗的身患不治之症的慢性病患者及其亲属(2021年6月至2022年7月)。

结果

结果基于436份问卷的数据(患者:n = 263,亲属:n = 173)。所有属性对选择决策均有统计学上的显著影响,其中护理地点最为重要。所有受访者都强烈倾向于在患者家中接受护理而非在家庭以外的地方。患者强调了特殊医疗(姑息)护理的重要性,并重视陪伴活动,这些活动通常由临终关怀志愿者协助开展。亲属而非患者认为护理的频率和时长高度相关。

结论

结果表明,相较于在家庭以外的地方接受护理,患者对在家中接受护理的需求更高。在设计日间护理服务时,应考虑患者及其亲属对特殊医疗护理的高度偏好以及对减轻家庭护理负担的需求。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c94/10910970/14f60fe454a2/PPA-18-519-g0001.jpg

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