Patients' priorities for health research: focus group study of patients with chronic kidney disease
Patients' priorities for health research: focus group study of patients with chronic kidney disease
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DOI：
10.1093/ndt/gfn207
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发表时间：
2008-10-01
影响因子：
6.1
通讯作者：
Craig, Jonathan C.
中科院分区：
文献类型：
--
作者：
Tong, Allison;Sainsbury, Peter;Craig, Jonathan C.
背景消费者的喜好，包括在优先研究课题的广泛提倡，但优先级主要是由专业人士驱动。慢性肾脏疾病（CKD）患者从澳大利亚的四个肾透析和移植中心有目的地抽样参加9个重点小组（透析前，透析和移植患者各3个），这是从2006年7月至2006年9月进行。每项研究涉及6-8名参与者。转录本进行编码和主题分析，以确定经常性的研究主题和参与者的原因，他们的选择。与会者提出了八个研究重点：预防肾脏疾病，更好地获得和改善肾移植，减少CKD症状和与治疗相关的并发症，新技术疗法，CKD患者生活的心理社会方面，全身而不是器官专门护理，以及改善透析和护理人员支持。确定了五个主要的选择理由：生活正常化（开发适合日常生活的疗法和方案），利他主义（在个人需要之前考虑他人的福利），经济效率（引导资源以获得最大经济收益）、个人需求（基于感情、价值观、个人需求）和临床结果（改善CKD患者的健康状况和生理状况）。一个以患者为中心的研究议程是可能的，以引出CKD，并通过推理为其他医疗保健问题。与专注于具体干预措施和问题的研究人员不同，消费者从广泛的主题和生活质量结果方面进行思考。现在需要将以患者为中心的议程转化为研究优先事项设置和资源分配的有效方法。
Background. The inclusion of consumer preferences in prioritizing research topics is widely advocated, but prioritization is driven largely by professional agendas.Methods. Patients with chronic kidney disease (CKD) were purposively sampled from four kidney dialysis and transplant centres in Australia to participate in nine focus groups (three each for pre-dialysis, dialysis and transplant patients), which were conducted from July 2006 to September 2006. Each involved 6-8 participants. Transcripts were coded and thematically analysed to identify recurrent research topics and the participants' reasons for their choices.Results. Participants suggested eight research priorities: prevention of kidney disease, better access to and improvement in kidney transplantation, reduction of symptoms of CKD and complications associated with treatment, new technological therapies, psychosocial aspects of living with CKD, whole body not organ-specialized care, and improvement in dialysis and caregiver support. Five major reasons for the selections were identified: normalization of life (developing therapies and regimens that fit into daily living), altruism (considering the welfare of others before personal needs), economic efficiency (channelling resources for maximum economic gain), personal needs (preferences based on feelings, values, personal needs) and clinical outcomes (improving health states and the physiological condition of patients with CKD).Conclusions. A patient-focused research agenda is possible to elicit for CKD, and by inference for other healthcare issues. Unlike researchers who focus on specific interventions and questions, consumers think in terms of broad themes and quality of life outcomes. Effective methods for translating a patient-focused agenda into research priority setting and resource allocation are now needed.