Department of Public Health and Primary Care, KU Leuven - University of Leuven, Leuven, Belgium.
Research Foundation Flanders (FWO), Brussels, Belgium.
J Adv Nurs. 2021 Dec;77(12):4743-4754. doi: 10.1111/jan.14949. Epub 2021 Jul 9.
The aims of this study were to investigate the development of illness identity, the degree to which the disease is integrated into one's identity, by identifying trajectory classes in adults with congenital heart disease (CHD) and to describe these classes in terms of age, sex, disease complexity, patient-reported outcomes (PROs) and healthcare use.
This three-wave observational cohort study was carried from 2013 till 2015 and includes 276 adults (median age: 34 years; 54% men) with CHD.
Illness identity entails four dimensions: engulfment, rejection, acceptance and enrichment. PROs included perceived health status, quality of life and psychological distress. Latent class growth analysis, analysis of variance, Poisson regression and negative binomial regression analyses were performed.
Illness identity was relatively stable over time. The identified classes were meaningfully different in terms of age, disease complexity, PROs and healthcare use. Patients who did not reject their disease, patients who were not overwhelmed or patients who accepted their disease over time reported better health status and quality of life and less psychological distress. Less hospitalizations and visits to the general practitioner and medical specialist were reported by patients who were not overwhelmed or patients who accepted their disease over time. Patients with low rejection and high enrichment scores over time reported more visits at the general practitioner.
These findings indicate that illness identity should be taken into account when trying to understand and optimize PROs and healthcare use of adults with CHD.
This study scrutinizes the development and clinical meaningfulness of illness identity measured over time for adults with CHD. Illness identity was found to be stable over time. Moreover, the illness identity trajectories differed in terms of PROs and healthcare use, showing that measuring and intervening upon illness identity could be a potential pathway to optimize PROs and healthcare use.
本研究旨在通过识别先天性心脏病（CHD）成人患者的轨迹类别，来探讨疾病认同的发展，即疾病融入个体身份的程度，并从年龄、性别、疾病复杂程度、患者报告的结局（PROs）和医疗保健使用等方面对这些类别进行描述。
本研究是一项三波观察性队列研究，从 2013 年持续到 2015 年，纳入了 276 名 CHD 成人患者（中位年龄：34 岁；54%为男性）。
疾病认同包含四个维度：吞噬、拒绝、接受和丰富。PROs 包括感知健康状况、生活质量和心理困扰。采用潜在类别增长分析、方差分析、泊松回归和负二项回归分析。
疾病认同在时间上相对稳定。所识别的类别在年龄、疾病复杂程度、PROs 和医疗保健使用方面存在显著差异。随着时间的推移，不拒绝疾病、未被疾病压垮或接受疾病的患者报告的健康状况和生活质量更好，心理困扰更少。随着时间的推移，未被疾病压垮或接受疾病的患者报告的住院和全科医生及专科医生就诊次数更少。随着时间的推移，低拒绝和高丰富评分的患者报告更多的全科医生就诊次数。
这些发现表明，在试图理解和优化 CHD 成人的 PROs 和医疗保健使用时，应考虑疾病认同。
本研究详细研究了 CHD 成人随时间测量的疾病认同的发展和临床意义。随着时间的推移，疾病认同保持稳定。此外，疾病认同轨迹在 PROs 和医疗保健使用方面存在差异，这表明测量和干预疾病认同可能是优化 PROs 和医疗保健使用的潜在途径。
