Dewhurst Felicity, Wakefield Donna, Elverson Joanna, McConnell Robert, Bryan Charlotte, Spriggs Helena, Atkinson Kate, Frew Katherine
Population Health Sciences, Newcastle University, Newcastle upon Tyne, UK.
St Oswald's Hospice, Newcastle upon Tyne, UK.
BMJ Support Palliat Care. 2022 Dec 15. doi: 10.1136/spcare-2022-004037.
Palliative care needs to embrace research to guide service development and effective symptom management. Healthcare professionals often feel research is too burdensome for patients who have poor performance status or are near the end of life. Many studies exclude these groups from participating.We aimed to identify whether specialist palliative care inpatients would wish to take part in research and whether preference varies according to study design, demographics, diagnosis, performance status and prognosis.
100 inpatients in two National Health Service specialist palliative care units and one independent hospice in the Northeast of England completed a short questionnaire about preferences for involvement in research.
92% of participants stated they were interested in being involved in research. This was mostly unaffected by age, diagnosis, prognosis, performance and socioeconomic status. Three-quarters were within the last 3 months of life. Simple questions or interviews were the preferred methodology, whereas only half of patients would want further investigations or additional medications and fewer still wanted to participate in online activities, lifestyle change or group activities.
Palliative care inpatients welcome the opportunity to be involved in research and should not be excluded on the grounds of advanced disease, poor prognosis and low performance status.
姑息治疗需要开展研究以指导服务发展和有效的症状管理。医疗保健专业人员常常认为，对于身体状况较差或濒临生命终点的患者而言，研究负担过重。许多研究将这些群体排除在参与范围之外。我们旨在确定姑息治疗专科住院患者是否愿意参与研究，以及其意愿是否因研究设计、人口统计学特征、诊断、身体状况和预后而有所不同。
英格兰东北部两个国民保健服务专科姑息治疗病房和一家独立临终关怀医院的100名住院患者完成了一份关于参与研究意愿的简短问卷。
92%的参与者表示有兴趣参与研究。这大多不受年龄、诊断、预后、身体状况和社会经济地位的影响。四分之三的患者处于生命的最后3个月内。简单的问题或访谈是首选方法，而只有一半的患者愿意接受进一步检查或额外用药，更少的患者愿意参与在线活动、生活方式改变或团体活动。
姑息治疗住院患者欢迎参与研究的机会，不应因疾病晚期、预后不良和身体状况差而被排除在外。
