Institute of Social & Preventive Medicine (IUMSP), Lausanne University Hospital, Lausanne, Switzerland.
Division of Gastroenterology & Hepatology, Lausanne University Hospital, Lausanne, Switzerland.
PLoS One. 2018 May 17;13(5):e0197351. doi: 10.1371/journal.pone.0197351. eCollection 2018.
Patient-reported experience is an important component of a holistic approach to quality of care. Patients' expectations of treatments and global disease management may indicate their illness representations and their satisfaction and hopes regarding quality of care.
To study expectations of patients with inflammatory bowel disease.
Two focus groups were conducted with 14 patients to explore their expectations about treatments and disease management. From qualitative content analyses of focus group discussions, we built a 22-item expectations questionnaire that was sent to 1756 patients of the Swiss IBD cohort. Answers were collected on a visual analog scale from 0 to 100, and medians (interquartile range [IQR]) calculated. Factor analysis identified main expectation dimensions, and multivariate analyses were performed to describe associations with patient characteristics.
Of 1094 patients (62%) included in the study, 54% were female, 54% had Crohn's disease, 35% had tertiary education, and 72% were employed. Expectation dimensions comprised realistic, predictive, and ideal expectations and were linked to information, communication, daily care, and disease recognition. Half (11 of 22) of the expectations were ranked as very high (median score > 70), the 2 most important being good coordination between general practitioners and specialists (median score: 89, IQR: 71-96) and information on treatment adverse events (89, IQR: 71-96). Women had overall higher levels of expectations than did men. Expectations were not associated with psychosocial measures, except those related to disease recognition, and most of them were highly associated with increased concerns on disease constraints and uncertainty.
Patients have high expectations for information and communication among caregivers, the levels varying by gender and region. Patients also appear to request more active participation in their disease management.
患者报告的体验是整体护理质量方法的重要组成部分。患者对治疗和全球疾病管理的期望可能表明他们的疾病认知以及他们对护理质量的满意度和希望。
研究炎症性肠病患者的期望。
对 14 名患者进行了 2 个焦点小组讨论，以探讨他们对治疗和疾病管理的期望。从焦点小组讨论的定性内容分析中，我们构建了一个包含 22 个项目的期望问卷，发送给瑞士 IBD 队列的 1756 名患者。答案在 0 到 100 的视觉模拟量表上收集，计算中位数（四分位距 [IQR]）。因子分析确定了主要的期望维度，并进行了多元分析以描述与患者特征的关联。
在纳入研究的 1094 名患者中（62%），54%为女性，54%患有克罗恩病，35%接受过高等教育，72%有工作。期望维度包括现实、预测和理想期望，与信息、沟通、日常护理和疾病认知有关。（22 个期望中有）一半（11 个，中位数>70）被评为非常高，最重要的两个是全科医生和专科医生之间的良好协调（中位数：89，IQR：71-96）和治疗不良事件的信息（89，IQR：71-96）。女性的期望总体高于男性。期望与心理社会措施无关，除了与疾病认知有关的措施外，大多数措施与对疾病限制和不确定性的担忧增加高度相关。
患者对护理人员之间的信息和沟通期望很高，其水平因性别和地区而异。患者似乎还要求更积极地参与疾病管理。
