Macdonald Graham George, Koehn Cheryl, Attara Gail, Stordy Allan, Allerdings Marilee, Leese Jenny, Li Linda C, Backman Catherine L
Arthritis Research Canada, Richmond, BC, Canada.
Rehabilitation Sciences Graduate Program, University of British Columbia, Vancouver, BC, Canada.
J Particip Med. 2018 Nov 21;10(4):e10815. doi: 10.2196/10815.
Collectively, chronic inflammatory diseases take a great toll on individuals and society in terms of participation restrictions, quality of life, and economic costs. Although prior qualitative studies have reported patients' experiences and challenges living with specific diseases, few have compared the consequences of disease management in daily life across different types of inflammatory diseases in studies led by patient partners.
The aim of this study was to identify the significant consequences of inflammatory arthritis, psoriasis, and inflammatory bowel diseases on daily life and explore commonalities across diseases.
A cross-sectional Web-based survey was designed by patient research partners and distributed by patient awareness organizations via their social media channels and by sharing a link in a newspaper story. One open-ended item asked about burdens and responsibilities experienced in daily life. Informed by narrative traditions in qualitative health research, we applied a thematic content analysis to participants' written accounts in response to this item. This is an example of a study conceived, conducted, and interpreted with patients as research partners.
A total of 636 Canadians, with a median age band of 55-64 years, submitted surveys, and 80% of the respondents were women. Moreover, 540 participants provided written substantive responses to the open-ended item. Overall, 4 main narratives were generated: (1) daily life disrupted; (2) socioeconomic vulnerabilities; (3) stresses around visible, invisible, and hiding disabilities; and (4) actions aimed at staying positive. Ways in which participants experienced social stigma, pain and fatigue, balancing responsibilities, and worries about the future appeared throughout all 4 narratives.
People living with chronic inflammatory diseases affecting joints, skin, and the digestive tract report important gaps between health, social, and economic support systems that create barriers to finding the services they need to sustain their health. Regardless of diagnosis, they report similar experiences navigating the consequences of lifelong conditions, which have implications for policy makers. There is a need for outcome measures in research and service delivery to address patient priorities and for programs to fill gaps created by the artificial administrative separation of health services, social services, and income assistance.
总体而言，慢性炎症性疾病在参与限制、生活质量和经济成本方面给个人和社会带来了巨大损失。尽管先前的定性研究报告了患者患特定疾病的经历和挑战，但在由患者合作伙伴主导的研究中，很少有研究比较不同类型炎症性疾病在日常生活中疾病管理的后果。
本研究的目的是确定炎症性关节炎、银屑病和炎症性肠病对日常生活的重大影响，并探索不同疾病之间的共性。
患者研究合作伙伴设计了一项基于网络的横断面调查，并由患者宣传组织通过其社交媒体渠道以及在报纸报道中分享链接的方式进行分发。一个开放式问题询问了在日常生活中所经历的负担和责任。基于定性健康研究中的叙事传统，我们对参与者针对该问题的书面回答进行了主题内容分析。这是一项将患者作为研究合作伙伴构思、开展和解释的研究示例。
共有636名加拿大人提交了调查问卷，年龄中位数在55 - 64岁之间，80%的受访者为女性。此外，540名参与者对开放式问题提供了实质性的书面回答。总体而言，产生了4个主要叙事主题：（1）日常生活被打乱；（2）社会经济脆弱性；（3）围绕可见、不可见和隐藏残疾的压力；（4）保持积极的行动。参与者经历社会耻辱感、疼痛和疲劳、平衡责任以及对未来担忧的方式在所有4个叙事主题中均有体现。
患有影响关节、皮肤和消化道的慢性炎症性疾病的人们报告称，健康、社会和经济支持系统之间存在重大差距，这为他们获取维持健康所需的服务造成了障碍。无论诊断结果如何，他们报告在应对终身疾病后果方面有相似的经历，这对政策制定者具有启示意义。在研究和服务提供中需要有结果指标来解决患者的优先事项，并且需要有项目来填补因健康服务、社会服务和收入援助的人为行政分割所造成的差距。
