Publication: Sjögren Sendromunda hasta güçlendirme, katılım ve aktifliğinin yaşam kalitesi üzerine etkisinin değerlendirilmesi
Abstract
Amaç: Bu araştırmanın amacı, Sjögren Sendromlu (SS) hastalarda ‘‘Patient Empowerment, Engagement, and Activation Survey (PEEAS)’’ ölçeği ile değerlendirilen hasta güçlendirme, katılım ve aktiflik düzeylerinin yaşam kalitesi üzerindeki etkilerini belirlemek ve ilişkili faktörleri değerlendirmektir. Gereç ve Yöntem: Araştırmaya 222 Sjögren sendromlu hasta (K/ E:211/ 11; ort. yaş: 53,75±12,30 yıl) dâhil edildi. Veriler; sosyo-demografik özellikler, PEEAS ve EQ-5D-5L ölçeğini içeren bir anket aracılığıyla toplandı. 21 maddeden oluşan PEEAS ölçeği; Güçlendirme, Katılım ve Aktiflik ile ilgili 3 alt boyuttan oluşmaktadır. PEEAS ölçeğinin yapı geçerliliği Doğrulayıcı Faktör Analizi (DFA) ile değerlendirildi. EQ-5D-5L alt boyutlarına ait maddeler “hiçbir sorun yok (1 puan)’’ - ‘‘aşırı düzeyde sorun var (5 puan)’’ arasında puanlandı. Hastalar genel sağlık durumlarını ise Görsel Analog Skala (EQ VAS) ile değerlendirdi (0: Hayal edilebilecek en kötü sağlık; 100: Hayal edilebilecek en iyi sağlık). Bulgular: ‘‘PEEAS-Hasta Güçlendirme’’, ‘‘PEEAS-Hasta Katılım’’ ve ‘‘PEEAS-Hasta Aktiflik’’ puanlarının artışı ile ‘‘EQ VAS-Bugünkü Sağlık Durumu’’ puanının yükselmesi arasında istatistiksel olarak anlamlı korelasyonlar saptanmıştır (p<0,05). Bu alt boyut puanlarının; ‘‘sağlık durumları hakkında yeterli bilgiye sahip olduklarını belirten hastalar’’, ‘‘hekimlerine başvurmadan önce hastalıklarıyla ilgili bilgi arama eğiliminde olan hastalar’’ ve ‘‘genç hastalarda’’ diğerlerlerine göre daha yüksek olduğu belirlenmiştir. Benzer şekilde, EQ-5D-5L puanının; ‘‘genç hastalar’’, ‘‘hastalıkları hakkında yeterli bilgiye sahip hastalar’’, ‘‘genel sağlık durumunu olumlu değerlendiren hastalarda’’ diğerlerine göre daha yüksek olduğu bulunmuştur (p<0,05). Ayrıca, PEEAS ölçeğinin maddelerinin dağılımı ve alt gruplarına ait maddelerin doğrulayıcı faktör analiziyle doğrulandığı ve orijinal ölçekteki gibi alt gruplara dağıldığı belirlenmiştir. Aynı zamanda, Chronbach-alpha değerleri ≥0,88 olarak belirlenmiştir. Sonuç: PEEAS alt boyutları ile EQ VAS- Bugünkü sağlık durumu arasındaki ilişkiler hastalık yönetim stratejisi açısından oldukça önemlidir. Ayrıca, gruplar için sağlık bilgi düzeyi, muayene öncesi bilgiye erişim durumu ve yaşın önemli belirleyiciler olduğu da görülmüştür. Bunlara ek olarak, PEEAS geçerli ve güvenilir bir ölçme aracı olarak bulunmuştur.
Objective: This study aimed to determine the effects of patient empowerment, engagement, and activation levels, as measured by the ‘‘Patient Empowerment, Engagement, and Activation Survey (PEEAS)’’, on the quality of life in patients with Sjögren’s Syndrome (SS), and to assess the factors associated with these relationships in SS. Materials and Methods: A total of 222 patients with Sjögren’s syndrome (F/ M:211/ 11; mean age: 53.75±12.30 years) were included in the study. Data were collected through a survey comprising socio-demographic characteristics, PEEAS, and the EQ-5D-5L scale. PEEAS has 21 items and 3 subgroups regarding empowerment, activation and engagement. The construct validity of the PEEAS scale was evaluate using Confirmatory Factor Analysis (CFA). The items of the EQ-5D-5L subdimensions were scored on a scale ranging from ‘‘no problems (1 point)’’ to ‘‘extreme problems (5 points)’’. Patients assessed their general health status using the Visual Analog Scale (EQ VAS) (0: Worst health imaginable, 100: Best health imaginable). Results: Statistically significant correlations were found between the increase in ‘‘PEEAS-Patient Empowerment’’, ‘‘PEEAS-Patient Engagement’’ and ‘‘PEEAS-Patient Activation’’ scores and the increase in ‘‘EQ VAS-General Health Status’’ score (p<0.05). It was determined that the scores of this subgroups were higher in ‘‘patients who stated that they had sufficient information about their health status’’, ‘‘patients who tended to seek information about their diseases before consulting their physicians’’ and ‘‘young patients’’ compared to others. Similarly, the EQ-5D-5L score was found to be higher in ‘‘young patients’’, ‘‘patients who had sufficient information about their diseases’’, and ‘‘patients who evaluated their general health status positively’’ compared to others (p<0.05). In addition, the distribution of the items of the PEEAS scale and the distribution of the items belonging to the subgroups were confirmed by factor analysis and distributed into subgroups as in the original scale. Moreover, Cronbach’s alpha values were determined to be ≥0.88. Conclusion: The relationships between PEEAS subgroups and EQ VAS-General Health Status are very important in terms of disease management strategy. It was also observed that health knowledge level, access to information before examination and age were important determinants for the groups. In addition, PEEAS was found to be a valid and reliable measurement tool. Patient empowerment, patient engagement, patient activation, EQ-5D-5L, Sjögren’s syndrome
Objective: This study aimed to determine the effects of patient empowerment, engagement, and activation levels, as measured by the ‘‘Patient Empowerment, Engagement, and Activation Survey (PEEAS)’’, on the quality of life in patients with Sjögren’s Syndrome (SS), and to assess the factors associated with these relationships in SS. Materials and Methods: A total of 222 patients with Sjögren’s syndrome (F/ M:211/ 11; mean age: 53.75±12.30 years) were included in the study. Data were collected through a survey comprising socio-demographic characteristics, PEEAS, and the EQ-5D-5L scale. PEEAS has 21 items and 3 subgroups regarding empowerment, activation and engagement. The construct validity of the PEEAS scale was evaluate using Confirmatory Factor Analysis (CFA). The items of the EQ-5D-5L subdimensions were scored on a scale ranging from ‘‘no problems (1 point)’’ to ‘‘extreme problems (5 points)’’. Patients assessed their general health status using the Visual Analog Scale (EQ VAS) (0: Worst health imaginable, 100: Best health imaginable). Results: Statistically significant correlations were found between the increase in ‘‘PEEAS-Patient Empowerment’’, ‘‘PEEAS-Patient Engagement’’ and ‘‘PEEAS-Patient Activation’’ scores and the increase in ‘‘EQ VAS-General Health Status’’ score (p<0.05). It was determined that the scores of this subgroups were higher in ‘‘patients who stated that they had sufficient information about their health status’’, ‘‘patients who tended to seek information about their diseases before consulting their physicians’’ and ‘‘young patients’’ compared to others. Similarly, the EQ-5D-5L score was found to be higher in ‘‘young patients’’, ‘‘patients who had sufficient information about their diseases’’, and ‘‘patients who evaluated their general health status positively’’ compared to others (p<0.05). In addition, the distribution of the items of the PEEAS scale and the distribution of the items belonging to the subgroups were confirmed by factor analysis and distributed into subgroups as in the original scale. Moreover, Cronbach’s alpha values were determined to be ≥0.88. Conclusion: The relationships between PEEAS subgroups and EQ VAS-General Health Status are very important in terms of disease management strategy. It was also observed that health knowledge level, access to information before examination and age were important determinants for the groups. In addition, PEEAS was found to be a valid and reliable measurement tool. Patient empowerment, patient engagement, patient activation, EQ-5D-5L, Sjögren’s syndrome