Department of Integrated Care Medical, Medical University of Bialystok, 7a Maria Sklodowska-Curie Street, 15-096, Bialystok, Poland.
Department of Rheumatology and Internal Diseases, Medical University of Bialystok, Bialystok, Poland.
Rheumatol Int. 2018 Aug;38(8):1471-1478. doi: 10.1007/s00296-018-3998-0. Epub 2018 Mar 1.
In the process of the planned and systematic education of patients/families, it is extremely important to identify patients' health problems as well as their needs and expectations. The objective of this study was to determine the relationship between functional disability, health problems and perceived educational needs in people with systemic sclerosis (SSc). This was a cross-sectional analytic study conducted in six rheumatology centers in Poland. Functional disability was measured using HAQ-DI, and the magnitude of other health problems (pain, fatigue, intestinal problems, breathing problems, Raynaud's phenomenon, finger ulcerations) was measured using 0-100 mm visual analogue scales. The educational needs were measured using the Polish version of the Educational Needs Assessment Tool (Pol-ENAT). Spearman's correlation coefficient (r) was used to report associations. The sample comprised 140 patients, 125 (89.28%) were women. They had a mean (SD) age of 54 (14.23) and disease duration of 11 (10.27) years. The median (IQR) HAQ-DI was 1.12 (0.62-1.62) and mean ENAT score was 71.54 (SD 27.72). Patients needed to know more about the disease process, self-help measures and managing pain. All health problems had significant correlations with the overall educational needs, pain, functional disability and fatigue having the highest r = 0.359, p < 0.0001; r = 0.314, p < 0.001 and r = 0.270, p = 0.001, respectively. Health problems in people with SSc are associated with considerable educational needs; therefore, health professionals should take this into account when planning patient education. Group interventions should consider providing patient education related to disease process as a minimum.
在有计划、系统性的患者/家属教育过程中，识别患者的健康问题、需求和期望极为重要。本研究旨在确定系统性硬化症（SSc）患者的功能障碍、健康问题和感知教育需求之间的关系。这是一项在波兰六个风湿病中心进行的横断面分析研究。使用 HAQ-DI 测量功能障碍，使用 0-100mm 视觉模拟量表测量其他健康问题（疼痛、疲劳、肠道问题、呼吸问题、雷诺现象、手指溃疡）的严重程度。使用波兰版教育需求评估工具（Pol-ENAT）测量教育需求。使用 Spearman 相关系数（r）报告相关性。样本包括 140 名患者，其中 125 名（89.28%）为女性。他们的平均（SD）年龄为 54（14.23）岁，疾病持续时间为 11（10.27）年。中位数（IQR）HAQ-DI 为 1.12（0.62-1.62），平均 ENAT 评分为 71.54（27.72）。患者需要更多地了解疾病过程、自助措施和疼痛管理。所有健康问题均与整体教育需求显著相关，疼痛、功能障碍和疲劳的 r 值最高，分别为 0.359（p<0.0001）、0.314（p<0.001）和 0.270（p=0.001）。SSc 患者的健康问题与相当大的教育需求相关；因此，卫生专业人员在规划患者教育时应考虑到这一点。小组干预应考虑将与疾病过程相关的患者教育作为最低要求。
