METHODS: Using a validated Filipino version of the MPN-SAF-TSS questionnaire and the University of the Philippines-Department of Health QOL (UP-DOH QOL) questionnaire, a cross-sectional survey of consecutive patients with MPN from two public and two private tertiary hospitals was conducted. We purposively sampled adults, newly diagnosed or previously diagnosed with polycythemia vera (PV), essential thrombocythemia (ET), or myelofibrosis (MF). The mean scores were compared with the type of MPN using analysis of variance. Linear regression was done to determine the association of patients\' characteristics to the mean symptom burden and QOL scores, while logistic regression was used to determine the association of patient and disease characteristics with the level of symptom severity and QOL.
RESULTS: A total of 167 (63 PV, 66 ET, and 38 MF) patients were surveyed from four centers. The mean overall symptom burden score was 24.41 (standard deviation [SD] = 18.91) with MF having the highest score at 28.53, followed by PV at 23.75 and ET at 22.67. The majority (80.24%) had a high QOL with a mean global QoL score of 84.92 (SD = 16.75). Comparison of individual scores showed bone pain and weight loss were significantly higher in patients with MF compared to PV (p = 0.0002) and ET (p = 0.032); while pruritus was significantly higher in PV compared to ET and MF (p = 0.043). Logistic regression analysis showed female sex and being newly diagnosed (adjusted odds ratio [aOR] 11.22, 95% confidence interval [CI] 2.32-54.25) were associated with high symptom burden while having a controlled blood count (aOR 0.26, 95% CI 0.10-0.71) was associated with low symptom burden and high QOL.
CONCLUSIONS: The majority of the participants were symptomatic with moderate to severe symptom burden. While no statistically significant difference was seen among the three types of MPN in terms of overall mean symptom score, patients with MF were more likely to have a severe symptom burden while patients with ET had the least symptoms. Despite having symptoms, QOL was regarded as high. QoL was significantly higher among those with PV or ET than those with MF. Our study highlighted the utility of a validated symptom scoring system in determining the symptom burden and who would benefit from pharmacologic/non-pharmacologic symptom management. Results emphasized incorporating symptom scoring in clinical practice and going beyond blood counts in caring for our patients with MPN.
方法:使用经过验证的菲律宾版本的MPN-SAF-TSS问卷和菲律宾大学-卫生部QOL(UP-DOHQOL)问卷,我们对来自两家公立和两家私立三级医院的连续MPN患者进行了横断面调查.我们有目的地对成年人进行采样,新诊断或先前诊断为真性红细胞增多症(PV),原发性血小板增多症(ET),或骨髓纤维化(MF)。使用方差分析将平均得分与MPN类型进行比较。进行线性回归以确定患者特征与平均症状负担和生活质量评分之间的关联。而logistic回归用于确定患者和疾病特征与症状严重程度和生活质量的关联。
结果:总计167(63PV,66ET,和38名MF)患者从四个中心进行了调查。平均总体症状负担评分为24.41(标准偏差[SD]=18.91),MF得分最高,为28.53,其次是PV,为23.75,ET为22.67。大多数(80.24%)的QOL较高,平均全球QoL得分为84.92(SD=16.75)。个体评分的比较显示,与PV(p=0.0002)和ET(p=0.032)相比,MF患者的骨痛和体重减轻明显更高;而与ET和MF相比,PV患者的瘙痒明显更高(p=0.043)。Logistic回归分析显示,女性和新诊断(调整比值比[aOR]11.22,95%置信区间[CI]2.32-54.25)与高症状负担相关,而血细胞计数受控(aOR0.26,95%CI0.10-0.71)与低症状负担和高生活质量相关。
结论:大多数参与者有中度至重度症状负担。虽然三种类型的MPN在总体平均症状评分方面没有统计学上的显着差异,MF患者更可能有严重的症状负担,而ET患者症状最少。尽管有症状,QOL被认为很高。PV或ET患者的QoL明显高于MF患者。我们的研究强调了经过验证的症状评分系统在确定症状负担以及谁将从药物/非药物症状管理中受益的实用性。结果强调在临床实践中纳入症状评分,并超越血细胞计数来照顾我们的MPN患者。