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患者参与是否会影响炎症性肠病患者的健康相关生活质量?一项横断面研究在炎症性肠病患者中的发现。

Does patient engagement affect IBD patients' health-related quality of life? Findings from a cross-sectional study among people with inflammatory bowel diseases.

机构信息

EngageMinds Hub, Consumer, Food and Health Engagement Research Center, Faculty of Psychology, Università Cattolica del Sacro Cuore, Milan, Italy.

EngageMinds Hub, Consumer, Food & Health Engagement Research Center, Università Cattolica del Sacro Cuore, Milan, Italy.

出版信息

Health Qual Life Outcomes. 2021 Mar 7;19(1):77. doi: 10.1186/s12955-021-01724-w.

DOI:10.1186/s12955-021-01724-w
PMID:33678181
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7938585/
Abstract

BACKGROUND

Patients diagnosed with inflammatory bowel disease (IBD) are required to deal with the unpredictability of this clinical condition, which is associated with poorer health-related quality of life (HRQoL) compared to other clinical conditions. Patient engagement is currently demonstrated to relate with chronic patients' HRQoL, but few studies have been conducted among this population.

METHODS

A cross-sectional study was conducted among 1176 IBD patients. Data were collected on participants' HRQoL (SIBD-Q) and patient engagement (PHE-s®). Regression analysis was used to examine the effects of patient engagement on HRQoL.

RESULTS

About the half of the sample (47%) reported a low patient engagement level. 30% of the sample reported a low level of HRQoL. Psycho-emotional functioning resulted to be the aspect of HRQoL most impacted in the 37% of the sample. The regression model showed that PHE-s® is significantly related to the SIBD-Q total score (B = .585; p < .001; R squared = .343) and to the subscales' scores-systemic symptoms (B = .572; p < .001; R squared = .327), bowel symptoms (B = .482; p < .001; R squared = .232), social (B = .485; p < .001; R squared = .234) and psycho-emotional (B = .607; p < .001; R squared = .369) functioning.

CONCLUSIONS

Patients who are engaged in their IBD care pathway are more likely to report higher level of HRQoL, thus offering clues to potential therapeutic approaches to ameliorating IBD patients' wellbeing. As this is a modifiable factor, screening for patient  health engagement levels, coupled with appropriate interventions, could improve care, and ultimately improve HRQoL outcomes among IBD patients.

摘要

背景

与其他临床情况相比,诊断为炎症性肠病 (IBD) 的患者需要应对这种临床情况的不可预测性,这与较差的健康相关生活质量 (HRQoL) 有关。目前已经证明,患者参与与慢性患者的 HRQoL 有关,但针对这一人群的研究较少。

方法

对 1176 名 IBD 患者进行了横断面研究。收集了参与者的 HRQoL(SIBD-Q)和患者参与度(PHE-s®)数据。回归分析用于检验患者参与度对 HRQoL 的影响。

结果

约有一半(47%)的样本报告了低水平的患者参与度。30%的样本报告了低水平的 HRQoL。在样本的 37%中,心理情绪功能是 HRQoL 受影响最大的方面。回归模型显示,PHE-s®与 SIBD-Q 总分(B=0.585;p<0.001;R²=0.343)和子量表分数-全身症状(B=0.572;p<0.001;R²=0.327)、肠道症状(B=0.482;p<0.001;R²=0.232)、社会(B=0.485;p<0.001;R²=0.234)和心理情绪(B=0.607;p<0.001;R²=0.369)功能显著相关。

结论

参与其 IBD 护理途径的患者更有可能报告更高水平的 HRQoL,从而为改善 IBD 患者的幸福感提供潜在治疗方法的线索。由于这是一个可改变的因素,因此对患者健康参与度进行筛查,结合适当的干预措施,可能会改善 IBD 患者的护理,并最终改善其 HRQoL 结果。

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