Parsons Suzanne, Thomson Wendy, Cresswell Katharine, Starling Bella, McDonagh Janet E
Public Programmes Team, Central Manchester University Hospitals NHS Foundation Trust and University of Manchester, Manchester Academic Health Science Centre, Manchester, UK.
Arthritis Research UK Centre for Genetics and Genomics, Centre for Musculoskeletal Research, Division of Musculoskeletal and Dermatological Sciences, School of Biological Sciences, Faculty of Biology, Medicine and Health, Manchester Academic Health Science Centre, The University of Manchester, Manchester, UK.
Pediatr Rheumatol Online J. 2017 Jul 3;15(1):53. doi: 10.1186/s12969-017-0181-1.
The involvement of people of all ages including young people in research is now widely advocated but prioritisation of research topics is still driven largely by professional agendas. Evidence from adult literature has reported a mismatch between a researcher and patient generated list of research topics. There have been no studies to date exploring the priorities of young people with long term conditions other than in SLE. The study aimed to explore the research priorities of young people across the UK with respect to rheumatic conditions.
Focus groups were undertaken with young people aged 11-24 years with rheumatic conditions recruited across the UK via members of the Barbara Ansell National Network for Adolescent Rheumatology BANNAR and relevant national charities. Data was analysed using a Framework approach. Participants discussed their beliefs about what should be researched in: Basic Science; Clinical Medicine; Health Services, Psychosocial, and Public Health. They were then invited to prioritize these areas in terms of how much funding they should receive.
Thirteen focus groups were held involving 63 participants (18 males: 45 females, mean age 16 years, range 10 to 24) in all four nations of the UK. Young people's research priorities were influenced by whether they felt research would achieve benefits for all or just some patients and long or short term goals. Another influence was whether participants felt that research areas were already well funded. Across all groups, Basic Science was a key priority and participants felt that psychosocial research should be prioritized more. Health Services Research was a lower priority, as the majority of participants were happy with their care. Clinical medicine was not a high priority as young people were happy with their medication or uncomfortable with trying new ones. Finally, for nearly all groups, Public Health was a low priority. Differences were also observed between the two age groups and across the geographically diverse focus groups.
Understanding young people's research priorities is important to develop research that is in tune with their needs. The results highlight the importance of considering the whole age range of adolescence and young adulthood as well as geographical diversity. The findings from this work will inform the future research of the Barbara Ansell National Network for Adolescent Rheumatology BANNAR in the UK.
目前广泛提倡各年龄段人群，包括年轻人参与研究，但研究主题的优先级仍在很大程度上由专业议程驱动。来自成人文献的证据表明，研究人员列出的研究主题与患者列出的存在差异。迄今为止，除了系统性红斑狼疮外，尚无研究探讨患有长期疾病的年轻人的优先事项。该研究旨在探讨全英国患有风湿性疾病的年轻人的研究优先事项。
通过芭芭拉·安塞尔青少年风湿病全国网络（BANNAR）成员及相关全国性慈善机构，在英国各地招募了11至24岁患有风湿性疾病的年轻人，开展焦点小组讨论。采用框架方法对数据进行分析。参与者讨论了他们对基础科学、临床医学、卫生服务、心理社会和公共卫生等领域应研究内容的看法。随后，邀请他们根据各领域应获得的资金数额对这些领域进行优先级排序。
在英国所有四个地区共举行了13次焦点小组讨论，涉及63名参与者（18名男性，45名女性，平均年龄16岁，年龄范围为10至24岁）。年轻人的研究优先级受他们认为研究是否会使所有或仅部分患者受益以及长期或短期目标的影响。另一个影响因素是参与者是否认为研究领域已有充足资金。在所有小组中，基础科学是关键优先事项，参与者认为心理社会研究应得到更多优先考虑。卫生服务研究的优先级较低，因为大多数参与者对他们所接受的护理感到满意。临床医学并非高度优先事项，因为年轻人对他们正在服用的药物感到满意或对尝试新药感到不适。最后，几乎所有小组都认为公共卫生的优先级较低。在两个年龄组以及地理位置不同的焦点小组之间也观察到了差异。
了解年轻人的研究优先事项对于开展符合他们需求的研究很重要。结果凸显了考虑整个青少年和青年成年年龄范围以及地域多样性的重要性。这项工作的结果将为英国芭芭拉·安塞尔青少年风湿病全国网络（BANNAR）的未来研究提供参考。
