Department of Medical Humanities, EMGO+ Institute, VU Medical Centre, Amsterdam, The Netherlands.
Nephrol Dial Transplant. 2011 Oct;26(10):3189-95. doi: 10.1093/ndt/gfq833. Epub 2011 Mar 4.
The value of incorporating patients' perspectives in health care is being acknowledged more and more because such incorporation may improve quality of health care. However, research priorities are mostly driven by professionals. In this study, renal patients were engaged to list priorities for social scientific research in order to complement the professionals' research agenda on kidney diseases.
A qualitative methodology was conducted by a team consisting of researchers and renal patients. Individual and group interviews were held in order to develop a social scientific research agenda from the perspective of patients on dialysis or with a history of dialysis. Subsequently, some current medical literature was scanned to explore whether or not the top priorities in this social science agenda were indeed under investigation by scientists in the field of health research.
Respondents prioritized 17 research themes. Three top priorities included research on coping, family life and mastery in the face of demanding treatment. As patients have to adapt themselves permanently to the unpredictability of their disease and different stressors, research on coping receives high priority. The patients' illness affects the family as well and patients therefore indicate that research should focus on their relatives and the family as a social system. Patients often feel their lives are run by the requirements of the medical system. Strategies that help patients to remain independent and keep control over their own life are therefore considered as highly important research topics.
Renal patients' social scientific research agenda can be used together with biomedical research agendas, in order to match research with the context and needs of patients. Social scientific research topics should be studied from a holistic perspective as having a disease and living a life are interrelated. This requires intense collaboration between biomedical and social scientific researchers.
越来越多的人认识到将患者视角纳入医疗保健中的价值，因为这种纳入可能会提高医疗保健质量。然而，研究重点主要由专业人士驱动。在这项研究中，肾患者被邀请列出社会科学研究的优先事项，以补充专业人员关于肾脏疾病的研究议程。
一个由研究人员和肾患者组成的团队采用了定性方法。进行了个人和小组访谈，以便从透析或有透析史的患者的角度制定社会科学研究议程。随后，扫描了一些当前的医学文献，以探讨该社会科学议程中的优先事项是否确实正在被健康研究领域的科学家调查。
受访者优先考虑了 17 个研究主题。三个首要优先事项包括应对、家庭生活和掌握面对苛刻治疗的研究。由于患者必须永久适应疾病的不可预测性和不同的压力源，因此应对研究受到高度重视。患者的疾病也会影响家庭，因此患者表示，研究应集中在他们的亲属和家庭作为一个社会系统上。患者经常感到自己的生活受到医疗系统要求的支配。因此，帮助患者保持独立并控制自己生活的策略被视为高度重要的研究课题。
肾患者的社会科学研究议程可以与生物医学研究议程一起使用，以根据患者的背景和需求匹配研究。社会科学研究课题应该从整体角度进行研究，因为患病和生活是相互关联的。这需要生物医学和社会科学研究人员之间的密切合作。
