Seeborg Filiz Odabasi, Seay Roann, Boyle Marcia, Boyle John, Scalchunes Christopher, Orange Jordan Scott
Department of Pediatrics, Section of Immunology, Allergy and Rheumatology, Baylor College of Medicine and Texas Children's Hospital, 1102 Bates Ave. Suite 330, Houston, TX, 77030, USA.
The University of Texas Health Science Center, School of Public Health, Houston, TX, USA.
J Clin Immunol. 2015 Oct;35(7):638-50. doi: 10.1007/s10875-015-0196-7. Epub 2015 Oct 9.
Perceived health (PH) is a subjective measure of global health of individuals. While many studies have evaluated outcomes in patients with primary immune deficiency (PID), published literature evaluating PH among patients with PID is sparse. We evaluated the results of the largest self-reported survey of patients with PID to determine the factors that may contribute to differences in PH.
Data from a National Survey of Patients with Primary Immune Deficiency Diseases conducted by the Immune Deficiency Foundation was studied. Multivariate logistic regression was employed for data analysis.
Thirty percent of the patients perceived their health status as excellent or very good (EVG), 31 % as good (G), and 39 % as fair, poor or very poor (P). Older patients were less likely to have EVG-PH compared to G-PH. Ones with college degrees were more likely to have P-PH compared to G-PH, and less likely to have EVG-PH. Patients who were acutely ill and hospitalized in the past 12 months, ones with limited activity, and chronic diseases, were more likely to have P-PH compared to G-PH. Patients with "on demand" access to specialty care and ones on regular IVIG had higher OR of having EVG-PH as opposed to G-PH. Patients cared for mostly by an immunologist were less likely to have P-PH compared to G-PH.
Our results emphasize the importance of PH in clinical practice. We suggest that recognizing the factors that drive PH in patients with PID is important for the development of disease prevention and health promotion programs, and delivery of appropriate health and social services to individuals with PID.
感知健康(PH)是个体整体健康状况的主观衡量指标。虽然许多研究评估了原发性免疫缺陷(PID)患者的治疗结果,但评估PID患者PH的已发表文献却很少。我们评估了最大规模的PID患者自我报告调查结果,以确定可能导致PH差异的因素。
研究了免疫缺陷基金会开展的全国原发性免疫缺陷疾病患者调查数据。采用多因素逻辑回归进行数据分析。
30%的患者认为其健康状况为优秀或非常好(EVG),31%为良好(G),39%为一般、差或非常差(P)。与健康状况为G的患者相比,老年患者健康状况为EVG的可能性较小。与健康状况为G的患者相比,拥有大学学位的患者健康状况为P的可能性更大,而健康状况为EVG的可能性更小。过去12个月内曾急性患病并住院的患者、活动受限的患者以及患有慢性病的患者,与健康状况为G的患者相比,健康状况为P的可能性更大。与健康状况为G的患者相比,能够“按需”获得专科护理的患者以及定期接受静脉注射免疫球蛋白(IVIG)治疗的患者,健康状况为EVG的几率更高。与健康状况为G的患者相比,主要由免疫学家护理的患者健康状况为P的可能性较小。
我们的结果强调了PH在临床实践中的重要性。我们建议,认识到影响PID患者PH的因素对于制定疾病预防和健康促进计划以及为PID患者提供适当的健康和社会服务至关重要。