Alimentary Pharmacology & Therapeutics ( IF 6.6 ) Pub Date : 2024-11-29 , DOI: 10.1111/apt.18410
Angela J. Forbes
I enjoyed reading the article by Swaminathan et al. highlighting the noninflammatory burden of IBD [1]. The inclusion of quality-of-life measures such as fatigue, psychological symptoms, sexual function and disability would certainly add value to disease-driven treat-to-target outcomes. With several validated questionnaires available (and listed in table 2 of their article [1]), the inclusion of quality-of-life indicators in disease severity indices may be relatively easy for researchers to implement. The use of these types of measures for IBD is further normalised in clinical practice by their inclusion in patient management software such as Crohn's Colitis Care (CCCare) [2]. To reduce respondent burden and simplify the analysis, it may be tempting to use streamlined ‘short form’ versions of questionnaires, which have a limited number of questions and/or constrained multiple-choice answers. However, it should be noted that the use of different validated quality-of-life measures can lead to different conclusions as demonstrated in a study on life after proctocolectomy for ulcerative colitis [3]. Furthermore, it is unclear whether the existing quality-of-life measures go far enough to capture and reflect the factors that matter to patients themselves. Patients' expectations are growing with many wanting to express their preferences through shared decision-making. Patient preferences have become even more relevant in the current environment as new therapeutics are being introduced with limited prognostic indicators available to predict response or guide sequencing choices around these new medications [4].
Qualitative methods such as focus groups provide another approach to elicit information about the factors that are important to patients. Schoefs et al. used this technique to describe unmet needs and determine the treatment outcomes relevant to patients with IBD [5]. Their results emphasised factors such as the psychological burden of ‘uncertainty’, which included worries about unpredictable symptoms and urgency, medications losing efficacy, the need for future ostomy surgery and the risk of nutritional deficiencies and intestinal failure as a result of repeated surgeries [5]. Other factors, such as changes in physical appearance and weight gain, were seen as major issues reducing quality of life [5]. The importance placed on these factors by patients can be contrasted with the often physician-determined quality-of-life indicators that appear in standardised surveys. If the real drivers of patient quality of life are not understood or acknowledged, it will be a continuing struggle to truly improve quality of life from a patient perspective.
Another way to incorporate patient preferences and perspectives is through the inclusion of patient advocates as part of project teams. This partnership approach is commonly used when researching other vulnerable groups such as indigenous populations [6]. The consensus guidelines on extraintestinal manifestations of IBD are a recent example of including IBD patient advocates as part of an interdisciplinary approach [7].
In summary, I appreciate Swaminathan et al. inclusing quality-of-life indicators in the measures of disease severity. Their willingness to address difficult-to-discuss topics such as sexual functioning will no doubt have benefits for patient well-being. I hope this can extend further with wider recognition and understanding of the IBD outcomes that patients themselves deem important.
中文翻译:
信件:扩大炎症性肠病严重程度的测量范围以包括患者重要结局
我喜欢阅读 Swaminathan 等人的文章,该文章强调了 IBD 的非炎症负担 [1]。纳入生活质量指标,如疲劳、心理症状、性功能和残疾,肯定会为疾病驱动的治疗目标结果增加价值。有了几份经过验证的问卷(列在他们文章的表 2 中 [1]),研究人员可能相对容易实施将生活质量指标纳入疾病严重程度指数。这些类型的 IBD 措施被纳入患者管理软件(如 Crohn's Colitis Care, CCCare)[2],从而在临床实践中进一步规范化。为了减轻受访者的负担并简化分析,使用简化的“简短”版本的问卷可能很诱人,这些问卷的问题数量有限和/或多选答案有限。然而,应注意的是,使用不同的经过验证的生存质量指标可得出不同的结论,一项关于溃疡性结肠炎直肠结肠切除术后生活的研究显示了这一点[3]。此外,目前尚不清楚现有的生活质量衡量标准是否足以捕捉和反映对患者本身重要的因素。患者的期望越来越高,许多人希望通过共同决策来表达他们的偏好。在当前环境下,随着新疗法的推出,可用于预测反应或指导围绕这些新药的测序选择的预后指标有限,患者的偏好变得更加相关[4]。
焦点小组等定性方法提供了另一种方法来获取有关对患者重要的因素的信息。Schoefs 等人使用这种技术来描述未满足的需求并确定与 IBD 患者相关的治疗结果 [5]。他们的结果强调了“不确定性”的心理负担等因素,其中包括对不可预测的症状和紧迫性的担忧、药物失去疗效、未来造口手术的需要以及重复手术导致营养缺乏和肠衰竭的风险 [5]。其他因素,如外貌变化和体重增加,被视为降低生活质量的主要问题 [5]。患者对这些因素的重视可以与标准化调查中出现的通常由医生确定的生活质量指标形成对比。如果不了解或承认患者生活质量的真正驱动因素,那么从患者的角度真正提高生活质量将是一场持续的斗争。
纳入患者偏好和观点的另一种方法是将患者倡导者纳入项目团队。这种合作方法通常用于研究其他弱势群体,如土著人口 [6]。关于 IBD 肠外表现的共识指南是将 IBD 患者倡导者作为跨学科方法的一部分的最新例子 [7]。
总之,我很欣赏 Swaminathan 等人在疾病严重程度的测量中包括生活质量指标。他们愿意解决性功能等难以讨论的话题无疑会对患者的健康有好处。我希望这可以通过更广泛地认识和理解患者自己认为重要的 IBD 结果来进一步扩展。