Schölvinck Anne-Floor M, de Graaff Bert M B, van den Beld Mechteld J, Broerse Jacqueline E W
UMC Utrecht, Utrecht, The Netherlands.
Department of Health Care Governance, Institute of Health Policy and Management (iBMG), Erasmus University Rotterdam, Rotterdam, The Netherlands.
Eur J Cancer Care (Engl). 2019 Mar;28(2):e12989. doi: 10.1111/ecc.12989. Epub 2019 Jan 23.
The experiential knowledge of patients can provide research communities with complementary perspectives on disease. The aim of this study was to identify and prioritise everyday problems and research needs of haematological cancer patients and people who have undergone a stem cell transplantation.
A mixed-method participatory research approach (the Dialogue Model) was applied, including interviews (n = 19), four focus group discussions (n = 27), a questionnaire (n = 146) and a stakeholder dialogue meeting (n = 30) with patients in the Netherlands.
Patients' physical discomfort, psychosocial issues, problems with the healthcare system and policy issues were highlighted. Respondents prioritise research aimed at factors potentially influencing survival, such as lifestyle, and research aimed at improving patients' quality of life, for example improving memory and concentration problems. Topics also focused on physical discomfort, causal mechanisms, and healthcare organisation and policies. Research of a social scientific character is underrepresented, and as such, patients' everyday problems are not all directly reflected in the research agenda.
Our findings indicate that patients, besides emphasising the importance of improving survival, have a clear desire to increase control over their lives.
患者的经验性知识可为研究团体提供关于疾病的补充观点。本研究的目的是确定血液癌症患者及接受过干细胞移植的人群的日常问题和研究需求，并确定其优先顺序。
采用了一种混合方法参与式研究方法（对话模型），包括访谈（n = 19）、四次焦点小组讨论（n = 27）、一份问卷（n = 146）以及与荷兰患者举行的一次利益相关者对话会议（n = 30）。
突出了患者的身体不适、心理社会问题、医疗保健系统问题和政策问题。受访者将旨在研究潜在影响生存的因素（如生活方式）的研究以及旨在改善患者生活质量（如改善记忆和注意力问题）的研究列为优先事项。主题还集中在身体不适、因果机制以及医疗保健组织和政策方面。具有社会科学性质的研究代表性不足，因此患者的日常问题并未全部直接反映在研究议程中。
我们的研究结果表明，患者除了强调提高生存率的重要性外，还明确希望增强对自己生活的掌控。
