背景:慢性炎症性肠病(IBD)的治疗旨在改善患者的生活质量,治疗成功的程度通过患者报告的结果(PRO)来衡量。然而,用于收集PRO的问卷通常包括非IBD特有的量表。改善这些量表需要更深入地了解患者的生活经验。通过这项研究,我们提供了关于IBD患者如何体验自己的身体和自我以及他们如何在精准医学(PM)背景下调整生活计划的初步见解和假设。指导性的问题是了解他们需要什么来实现美好的生活,面对自己的疾病。
方法:我们开发了一个“美好生活”的概念,它借鉴了菲利帕脚的“归化”方法,并区分了与美好生活相关的六个不同维度。这个概念指导了我们,因为我们对在精准医学临床研究环境中患有IBD的患者进行了10次定性访谈。访谈旨在获得解决我们研究问题的见解:身体体验如何影响IBD患者的美好生活?我们通过解释性现象学分析(IPA)分析了访谈。
结果:出现了五个小组体验主题:(i)生活选择和计划,(ii)其他人的回应,(iii)处理他人回应的策略,(iv)对身体和自我的感知,和(v)尽管遭受了痛苦,但对生活的看法还是很好的。我们在这里报告其中三个(i,iv和v),这主要与评估PM护理的结果有关。而对于“生活选择和计划(I)”,“我们的研究主要证实了以前的研究,具有“对身体和自我的感知”(Iv),“我们发现一些患者改变了他们与身体和自己的关系。他们认为身体或疾病是“另一个”,他们的自我似乎脱离了自己的身体。尽管这可能是患者用来将自己的病情及其“恶心”症状的责任分配给他人的回避策略,“将其纳入患者报告结果(PRO)评估中非常重要。
结论:我们得出的结论是,基于Foot的美好生活概念的多维方法非常适合作为调查IBD患者生活质量的基础。基于此概念的访谈产生的结果超出了对健康相关生活质量(HRQoL)的理解。此外,我们提供了一些关于患者获得良好生活机会的考虑因素,以及进一步制定患者报告结果量表的建议。
BACKGROUND: Treatment of chronic inflammatory bowel disease (IBD) aims to improve patients\' quality of life and the extent of treatment success is measured via patient reported outcomes (PROs). However, questionnaires used to collect PROs often include scales that are not specific to IBDs. Improving these scales requires a deeper understanding of patients\' lived experience. With this study we give first insights and develop hypotheses on how patients with IBDs experience their body and
self and how they adjust their life plans in the context of precision medicine (PM). The guiding question is to understand what they need to achieve a good life, while facing their disease.
METHODS: We developed a conception of the \"good life\" that draws on Philippa Foot\'s \"naturalized\" approach and distinguishes six different dimensions that are relevant for a good life. This conception guided us as we conducted 10 qualitative interviews with patients suffering from IBD who were in precision medicine clinical research settings. The interviews aimed to gain insights for answering our research question: How do body experiences affect the good life of patients with IBD? We analyzed the interviews with interpretative phenomenological analysis (IPA).
RESULTS: Five group experiential themes emerged: (i) Life options and plans, (ii) other people\'s responses, (iii) strategies to deal with others\' responses, (iv) perception of the body and
self, and (v) perception of life as good despite suffering. We report here on three of them (i, iv and v), which are primarily relevant for evaluating the outcomes of PM care. Whereas with \"life options and plans (i),\" our study predominantly confirmed previous research, with \"perception of the body and
self (iv),\" we found that some of the patients changed their relationship to their body and themselves. They perceived the body or the disease as the \"other\" and their
self appears divorced from their own body. Although this might be an avoidance strategy patients use to assign responsibility for their condition and its \"disgusting\" symptoms to the \"other,\" it is important to include it in patient reported outcome (PRO) assessments.
CONCLUSIONS: We conclude with the insight that the multi-dimensional approach based on Foot\'s concept of a good life is well-suited as a basis for investigating the quality of life of people with IBD. Interviews based on this concept produced results that go beyond the understanding of health-related quality of life (HRQoL). Additionally, we offer some considerations about patients\' opportunities for achieving a good life and suggestions for further developing patient reported outcome scales.