Treatment satisfaction

治疗满意度
  • 文章类型: Journal Article
    牛皮癣病(PsD)是一种慢性疾病,影响皮肤(牛皮癣)和关节(牛皮癣关节炎,PsA)对患者生活质量(QOL)有显著影响。我们报告了日本牛皮癣及其他患者亚组的发现:全球牛皮癣疾病调查,横截面,患者自我报告的定量在线调查,医疗保健专业(HCP)诊断,中度至重度斑块型银屑病,有或没有PSA。在网上招募的合格患者完成了一项为期25分钟的基于互联网的日语调查。我们评估了患者对PsD系统性的理解,疾病负担,对他们的HCP的感知,治疗期望,和对护理的满意度。148名患者中,74%是女性。总的来说,65%的患者知道他们疾病的系统性。少数患者(27%)知道PsA与他们的牛皮癣有关,30%和42%的患者不知道任何表现和合并症,分别,与PsD有关。总的来说,21%的患者报告说,他们的疾病对他们的生活质量有“非常大”到“非常大”的影响(通过皮肤病生活质量指数评分评估),而大多数人(61%)报告对生活质量有“小”影响或“完全没有影响”。由于PsD,患者经历了耻辱和歧视,并对人际关系产生了负面影响。与单纯银屑病患者(46%)相比,更多的银屑病患者(66%)对目前的治疗方法感到满意。总的来说,41%的患者没有参与决定他们的治疗目标。这些结果表明,日本患者可能没有完全意识到PsD的系统性。其表现和合并症。虽然这些患者对他们目前的治疗有些满意,在决定治疗目标时,他们只是偶尔被咨询。需要采取政策措施来解决患者遭受的污名和歧视。增加患者参与他们的护理支持共同的决策和提高治疗结果。
    Psoriatic disease (PsD) is a chronic disease affecting skin (psoriasis) and joints (psoriatic arthritis, PsA) that has a significant impact on patients\' quality of life (QOL). We report findings from the Japanese subgroup of patients included in Psoriasis and Beyond: The Global Psoriatic Disease Survey, a cross-sectional, quantitative online survey of patients with self-reported, healthcare professional (HCP)-diagnosed, moderate-to-severe plaque psoriasis, with or without PsA. Eligible patients who were recruited online completed a 25-min internet-based survey in Japanese. We assessed patients\' understanding of the systemic nature of PsD, disease burden, perception towards their HCPs, treatment expectations, and satisfaction with care. Of the 148 patients, 74% were females. In total, 65% of patients were aware of the systemic nature of their disease. A minority of patients (27%) were aware that PsA was related to their psoriasis, and 30% and 42% of patients were unaware of any manifestations and comorbidities, respectively, related to PsD. Overall, 21% of patients reported that their disease has a \"very large\" to \"extremely large\" impact on their QOL (assessed by Dermatology Life Quality Index score), while the majority (61%) reported a \"small\" effect or \"no effect\" at all on QOL. Patients experienced stigma and discrimination and had a negative impact on relationships due to PsD. More patients with psoriasis and concomitant PsA (66%) were satisfied with their current treatment than those with psoriasis alone (46%). Overall, 41% of patients were not involved in deciding their treatment goals. These results suggest that Japanese patients may not be fully aware of the systemic nature of PsD, its manifestations and comorbidities. While these patients were somewhat satisfied with their current treatment, they were only occasionally consulted in deciding treatment goals. Policy measures are required to address the stigma and discrimination experienced by patients. Increased patient participation in their care supports shared decision-making and enhanced treatment outcomes.
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  • 文章类型: Journal Article
    背景:寻常痤疮是世界上最普遍的炎症性疾病之一,主要影响青少年。其患病率和影响因素因地区和人群而异。遗传易感性,荷尔蒙的影响,饮食习惯,生活方式的选择,和环境因素被认为是重要的贡献者。
    方法:这是一项横断面研究,涉及来自Jazan地区的419名参与者,沙特阿拉伯。这项研究采用了非概率便利抽样技术。通过在线问卷调查收集数据,并使用统计产品和服务解决方案(SPSS,版本27;IBMSPSSStatisticsforWindows,Armonk,NY).
    结果:研究发现痤疮患病率很高,影响了一半以上(66.8%)的参与者,轻度严重程度报告为51.8%。粉刺最常见于面部(65.2%),其次是背部(45.3%)和胸部(29.6%)。油性皮肤的参与者患痤疮的可能性是干性皮肤的两倍(OR=2.14)。年龄增长与痤疮风险每年降低5%相关。发现年龄显著相关(p=0.010),女性(p=0.017),和油性皮肤(p<0.001)与痤疮的发展。
    结论:该研究发现,在Jazan地区的年轻人群中,寻常痤疮的患病率很高,沙特阿拉伯。年龄,女性性别,油性皮肤是寻常痤疮的预测因素。诸如痤疮疤痕之类的并发症和诸如害羞之类的心理影响强调了痤疮对社会和心理健康的重大负担。加强治疗和提高生活质量需要加强对寻常痤疮的认识运动,其治疗,和相关的并发症,正如研究所揭示的那样。
    BACKGROUND: Acne vulgaris is one of the most prevalent inflammatory conditions in the world that primarily affects teenagers. Its prevalence and the contributing factors vary across different regions and populations. Genetic predisposition, hormonal influences, dietary habits, lifestyle choices, and environmental factors are believed to be significant contributors.
    METHODS: This was a cross-sectional study involving 419 participants from the Jazan region, Saudi Arabia. The study employed non-probability convenience sampling techniques. Data were collected through online questionnaires and analyzed using Statistical Product and Service Solutions (SPSS, version 27; IBM SPSS Statistics for Windows, Armonk, NY).
    RESULTS: The study found that acne prevalence was high, affecting more than half (66.8%) of the participants, with mild severity reported by 51.8%. Pimples were most commonly found on the face (65.2%), followed by the back (45.3%) and chest (29.6%). Participants with oily skin had twice the likelihood of acne compared to those with dry skin (OR=2.14). Increasing age was associated with a 5% decrease in acne risk per year. Significant associations were found for age (p=0.010), female gender (p=0.017), and oily skin (p<0.001) with acne development.
    CONCLUSIONS: The study found a high prevalence rate of acne vulgaris among the young population in the Jazan region, Saudi Arabia. Age, female gender, and having oily skin were predictors for developing acne vulgaris. Complications such as acne scarring and psychological impacts such as shyness underscore the significant burden of acne on social and psychological well-being. Enhanced treatment and improved quality of life necessitate heightened awareness campaigns concerning acne vulgaris, its treatments, and associated complications, as revealed by the study.
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  • 文章类型: Journal Article
    背景:光化性角化病(AK)的发病率正在增加,并且是皮肤白皙人群中最常见(前)的癌性病变,有很高的未满足的医疗需求。为了提高治疗依从性,评估患者对不同治疗方案的治疗相关评价非常重要.
    方法:纳入100例接受至少两种不同治疗方案治疗的AK患者。他们使用药物治疗满意度问卷(TSQM,每个类别最多100分)和李克特量表(LS,1=非常满意;6=不满意)。患者还被问及他们在治疗目标方面的需求,成本,type,持续时间,和治疗的位置。
    结果:81%的研究参与者为男性,平均年龄为74岁。95%的人发生了田间癌变。患者评估了八个常用的治疗程序(手术,冷冻疗法,各种外用药物,光动力疗法)。TSQM满意度评分为78.47±16.07(外科手术)至53.03±22.13(双氯芬酸-HA)。仅在疗效方面发现了手术之间的统计学显着差异。副作用被归类为低。低复发率和安全清除是最重要的治疗目标(LS:分别为1.18±0.44和1.27±0.53)。
    结论:了解患者的偏好对于坚持治疗至关重要,因此对于AK治疗的成功非常重要。在选择治疗方法时应考虑个性化的方法。
    BACKGROUND: Actinic keratoses (AK) are increasing in incidence and represent the most common (pre-)cancerous lesion in the fair-skinned population, with a high unmet medical need. In order to increase treatment adherence, it is very important to assess patients\' therapy-related evaluations of different treatment options.
    METHODS: 100 patients with AK who were treated with at least two different treatment options were included. They rated their therapies using the Treatment Satisfaction Questionnaire for Medication (TSQM, maximum 100 points per category) and a Likert scale (LS, 1  =  very satisfied; 6  =  not satisfied). Patients were also asked about their needs in terms of treatment goal, cost, type, duration, and location of treatment.
    RESULTS: 81% of the study participants were male and on average 74 years old. 95% had field cancerization. Eight frequently used therapy procedures were evaluated by the patients (surgery, cryotherapy, various topical agents, photodynamic therapy). The TSQM satisfaction scores ranged from 78.47 ± 16.07 (surgical procedures) to 53.03 ± 22.13 (diclofenac-HA). Statistically significant differences between the procedures were only found in the area of efficacy. Side effects were classified as low. Low recurrence rate and safe removal were the most important treatment goals (LS: 1.18 ± 0.44 and 1.27 ± 0.53, respectively).
    CONCLUSIONS: Understanding patient preferences is essential for adherence and is therefore of great importance for the success of AK therapy. Personalized approaches should be considered in the choice of therapy.
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  • 文章类型: Journal Article
    背景:用于治疗复发性多发性硬化症(RMS)的克拉屈滨片剂连续两年分两个脉冲治疗疗程给药,总共最多20个治疗日。这里我们提供克拉屈滨片上市后不久收集的数据,关注患者的观点。目的是调查患者的感知效果,耐受性,和便利,以及克拉屈滨片剂的全球满意度。
    方法:CLEVER是一项非介入性多中心研究,于2017年12月至2020年7月在德国进行。包括使用克拉屈滨片开始RMS治疗的成年患者。每位患者的观察时间为24周,包括3次访问(基线,第4周和第24周)。主要终点是第24周的总体治疗满意度,通过药物治疗满意度问卷14项(TSQM1.4)进行评估。亚组分析包括按治疗前分层。
    结果:总计,491例患者(69.2%为女性;平均(±SD)年龄40.3(±11.5)岁,85.1%预处理,中位EDSS2.5)开始克拉屈滨片治疗,并纳入分析。在第24周,平均(±SD)总体TSQM满意度得分为75.6(±19.0)。对于从注射或口服药物转换的患者,在所有TSQM领域,从基线到第24周的治疗满意度变化均为阳性,在总体满意度和副作用领域具有临床意义的效应大小.大多数患者(85.5%)在24周内保持无复发。在491名患者中,187例(38.1%)患者发生至少1次不良事件,8例(1.6%)患者发生1次严重不良事件。
    结论:克拉屈滨片治疗满意度高。从先前的注射剂或口服药物的转换转化为在第24周增加的治疗满意度,在全球满意度和副作用领域具有临床意义的效果。有效性和安全性与临床研究结果一致。
    BACKGROUND: Cladribine tablets for the treatment of relapsing multiple sclerosis (RMS) are administered in two pulsed treatment courses in two consecutive years, totalling a maximum of 20 treatment days. Here we present data collected shortly after the launch of cladribine tablets, focusing on the patient\'s perspective. The objective was to investigate patients\' perceived effectiveness, tolerability, and convenience, as well as global satisfaction of and with cladribine tablets.
    METHODS: CLEVER was a non-interventional multicentre study conducted in Germany from 12/2017 to 7/2020. Adult patients with RMS initiating therapy with cladribine tablets were included. Observation time per patient was 24 weeks, comprising 3 visits (baseline, week 4 and 24). The primary endpoint was overall treatment satisfaction at week 24, assessed by the Treatment Satisfaction Questionnaire for Medication 14 items (TSQM 1.4). Subgroup analyses included stratification by prior treatment.
    RESULTS: In total, 491 patients (69.2 % female; mean (±SD) age 40.3 (±11.5) years, 85.1 % pre-treated, median EDSS 2.5) initiated therapy with cladribine tablets and were included in the analysis. At week 24, the mean (±SD) global TSQM satisfaction score was 75.6 (±19.0). For patients switching from either injectables or oral medication, the change in therapy satisfaction from baseline to week 24 was positive in all TSQM domains with clinically meaningful effect sizes in the global satisfaction and side effects domains. Most patients (85.5 %) remained relapse-free over 24 weeks. Out of 491 patients, 187 (38.1 %) experienced at least one adverse event and 8 patients (1.6 %) one serious adverse event.
    CONCLUSIONS: Treatment satisfaction with cladribine tablets was high. The switch from prior injectables or oral medication translated into increased treatment satisfaction at week 24 with clinically meaningful effects in the global satisfaction and side effects domains. Effectiveness and safety were consistent with results from clinical studies.
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  • 文章类型: Journal Article
    全球,2019年,约有1800万人死于心血管疾病(CVD),发展中国家超过四分之三。心血管疾病患者不坚持用药会导致住院,症状恶化,更高的医疗成本,更多的紧急访问。因此,这项研究旨在评估在DebreBerhan综合专科医院(DBCSH)就诊的心力衰竭(HF)患者的治疗满意度和药物依从性以及预测因素,埃塞俄比亚。
    在DBCSH的医疗转诊诊所进行了一项基于医院的横断面研究。在研究期间,共有344名门诊HF患者在DBCSH医疗转诊诊所就诊。使用自我管理的医学问卷(SATMED-Q)评估治疗满意度。使用单向方差分析(ANOVA)和独立t检验确定预测变量与治疗满意度之间的关系。使用MoriskyGreenLevin药物依从性量表(MGLS)确定药物依从性。
    与药物相互作用(DDI)的参与者相比,坚持用药的可能性降低了约38%(AOR=0.62,95%CI:0.54-0.71)。此外,与仅服用一种药物的参与者相比,服用5种或更多种药物的参与者坚持用药的可能性降低约68%(AOR=0.32,95%CI:0.2~0.51).药物依从性和药物-药物相互作用之间的相关性仍然是通过服用药物数量的可能的伪相关性。参与者的治疗依从性和治疗满意度之间存在显著的正相关(rs=0.34,p=0.027)。
    HF患者的治疗满意度和治疗依从性分别为67.6%和60.9%,分别。DDI的存在和药物数量被确定为药物依从性的预测因子。
    UNASSIGNED: Globally, about 18 million people died from cardiovascular diseases (CVDs) in 2019, over three-quarters in developing countries. Non-adherence to medication in CVD patients causes hospitalization, worsened symptoms, higher healthcare costs, and more emergency visits. Hence, this study aimed to assess treatment satisfaction and medication adherence and predictors in heart failure (HF) patients attending Debre Berhan Comprehensive Specialized Hospital (DBCSH), Ethiopia.
    UNASSIGNED: A hospital-based cross-sectional study was undertaken at the medical referral clinic of DBCSH. A total of 344 ambulatory HF patients who visited the medical care of the DBCSH medical referral clinic during the study period were included. Treatment satisfaction was assessed using a self-administered Medicine Questionnaire (SATMED-Q). Relationships between predictor variables and treatment satisfaction were determined using one-way analysis of variance (ANOVA) and an independent t-test. Medication adherence was determined using the Morisky Green Levin Medication Adherence Scale (MGLS).
    UNASSIGNED: Participants with drug-drug interactions (DDIs) were approximately 38% less likely to adhere to medication compared to their counterparts (AOR = 0.62, 95% CI: 0.54-0.71). Additionally, participants who had taken five or more drugs were approximately 68% less likely to adhere to medication compared to those who had taken only one drug (AOR = 0.32, 95% CI: 0.2-0.51). The correlation between medication adherence and drug-drug interactions remains a possible pseudo-correlation via the number of medications taken. There was a noteworthy positive correlation (rs = 0.34, p = 0.027) between participants\' treatment adherence and treatment satisfaction.
    UNASSIGNED: The rate of treatment satisfaction and treatment adherence among HF patients was 67.6% and 60.9%, respectively. The presence of DDI and the number of drugs were identified as predictors to medication adherence.
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  • 文章类型: Journal Article
    评估正颌治疗的有效性可能很困难。为了解决这个问题,患者报告结果测量(PROM)和患者报告经验测量(PREM)已被提出作为从患者角度理解医疗质量的有价值的工具.因此,该项目的目的是采用PROM和PREM问卷来捕捉患者在正颌治疗过程中对其经验的看法,以及他们对术后状态的感知。在同意的预约和手术后的各个时间点向患者提供了术前和术后问卷。统计关系的评估是通过Fisher精确检验进行的。共收到64例术前反应和126例术后反应。进行手术的主要动机是面部和牙齿美学的改善,以及增加对照片和视频外观的满意度。这三个因素也被认为是最重要的术后益处。在受访者中,58%的人报告在24个月的随访中经历了下唇的感觉改变(p=0.02);然而,受影响的患者报告说,这对他们的日常活动没有影响.使用PROM和PREM评估生活质量是外科医生评估其治疗效果的有价值的方法。最重要的是,这些工具对于评估患者满意度特别有用,这是任何治疗的最终目标。
    Evaluating the effectiveness of orthognathic treatment can be difficult. To address this issue, patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) have been proposed as valuable instruments for understanding the quality of healthcare from the patients\' standpoint. Therefore, the aim of this project was to employ PROMs and PREMs questionnaires to capture the patients\' perspectives regarding their experience during the orthognathic treatment process, as well as their perception of their postoperative state. Preoperative and postoperative questionnaires were offered to patients at consenting appointment and at various timepoints after the surgery. The assessment of statistical relationships was carried out by means of Fisher\'s exact test. A total of 64 preoperative and 126 postoperative responses were received. The primary motivators for pursuing the surgery were the improvement of facial and dental aesthetics, as well as increased satisfaction with photographic and video appearances. These three factors were also cited as the most important postoperative benefits. Of the respondents, 58% reported experiencing altered sensation to the lower lip at the 24-month follow up (p = 0.02); however, the affected patients reported that this did not have an impact on their daily activities. The use of PROMs and PREMs to appraise the quality of life constitutes a valuable method for surgeons to gauge their treatment efficacy. Above all, such tools are particularly useful for evaluating patient satisfaction, which is the ultimate objective of any treatment.
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  • 文章类型: Meta-Analysis
    目的:几项研究发现皮下(SC)和静脉内(IV)给药类似的药物治疗长期免疫和自身免疫性疾病具有相似的临床效果,这意味着患者报告他们更喜欢的是,或者应该是,治疗选择的主要因素。因此,系统地收集有关患者偏好的证据很重要,使用SC或IV给药相同药物的治疗满意度和健康相关生活质量(HRQL)。材料与方法:PubMed数据库搜索于2021年10月15日进行。包括具有基于家庭的SC和基于医院的IV施用免疫球蛋白或用于治疗任何自身免疫性疾病或原发性免疫缺陷(PID)的生物疗法的经验的患者的研究。评估的结果是患者的偏好,治疗满意度和HRQL。使用随机效应模型对偏好数据进行荟萃分析。结果:总的来说,筛选了3504篇引文,46篇出版物描述了37项研究被纳入审查.总体上对SC的偏好高于IV给药,与PID和自身免疫性疾病的结果相似:PID,80%(95%置信区间[CI],64-94%)首选SC;自身免疫性疾病,83%(95%CI:73-92%);总体而言,82%(95%CI:75-89%)。荟萃分析还发现,84%(95%CI:75-92%)的患者更喜欢在家给药,而不是在医院治疗。使用生活质量指数对治疗满意度的分析发现,SC给药的治疗干扰和治疗设置评分始终优于IV给药。结论:与医院静脉输液相比,患者往往更喜欢,更满意,并报告更好的HRQL与SC在家里给药相同的药物,主要是由于更大的便利性。这项研究有助于对患有自身免疫性疾病或PID的患者进行循证护理。
    Aim: Several studies have found subcutaneous (SC) and intravenous (IV) administration of similar drugs for long-lasting immunological and autoimmune diseases to have similar clinical effectiveness, meaning that what patients report they prefer is, or should be, a major factor in treatment choices. Therefore, it is important to systematically compile evidence regarding patient preferences, treatment satisfaction and health-related quality of life (HRQL) using SC or IV administration of the same drug. Materials & methods: PubMed database searches were run on 15 October 2021. Studies involving patients with experience of both home-based SC and hospital-based IV administration of immunoglobulins or biological therapies for the treatment of any autoimmune disease or primary immunodeficiencies (PIDs) were included. The outcomes assessed were patient preferences, treatment satisfaction and HRQL. Preference data were meta-analyzed using a random-effects model. Results: In total, 3504 citations were screened, and 46 publications describing 37 studies were included in the review. There was a strong overall preference for SC over IV administration, with similar results seen for PIDs and autoimmune diseases: PID, 80% (95% confidence interval [CI], 64-94%) preferred SC; autoimmune diseases, 83% (95% CI: 73-92%); overall, 82% (95% CI: 75-89%). The meta-analysis also found that 84% (95% CI: 75-92%) of patients preferred administration at home to treatment in hospital. Analysis of treatment satisfaction using the life quality index found consistently better treatment interference and treatment setting scores with SC administration than with IV administration. Conclusion: Compared with IV infusions in hospital, patients tend to prefer, to be more satisfied with and to report better HRQL with SC administration of the same drug at home, primarily due to the greater convenience. This study contributes to evidence-based care of patients with autoimmune diseases or PIDs.
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  • 文章类型: Journal Article
    关于意大利患者对湿性年龄相关性黄斑变性(wAMD)的治疗满意度的数据有限。在这项横断面的现实世界研究中,评估了意大利wAMD患者对抗血管内皮生长因子(anti-VEGFs)治疗的满意度.
    这是非干预性的,涉及接受抗VEGF治疗的wAMD患者的横断面调查。该调查是通过电话通过虚拟助手进行的。使用新开发的诺华量身定制的治疗满意度问卷(NVSTTSQ)和经过验证的黄斑疾病治疗满意度问卷(MacTSQ)评估患者的治疗满意度。
    总的来说,在意大利的5个中心招募了154名可评估患者。患者的平均年龄(SD)为76.8岁(7.01)。NVSTTSQ评估的总体治疗满意度评分为40.50(7.11),信息域的均值为9.97(1.84),未满足需求域的均值为22.98(4.57)。患者对诊断沟通满意(4.99[1.30]),提供的有关治疗管理的信息(4.58[1.49],范围0-6),候诊室(4.40[1.43]),以及中心的就诊和注射管理(5.14[1.12]),中心黄斑病变的一般管理(5.22[1.01])。患者对疾病管理方面的独立性不满意(2.56[2.45]);他们希望获得有关疾病的更多信息(5.38[1.03]),并讨论已治疗患者的注射程序(4.02[1.94])。MacTSQ量表的总体治疗满意度得分为55.84(10.13)。
    患有wAMD的患者对意大利疾病的整体管理感到满意。然而,患者希望获得更多有关疾病预后和管理的信息.
    UNASSIGNED: Limited data is available on treatment satisfaction with the management of wet age-related macular degeneration (wAMD) among patients in Italy. In this cross-sectional real-world study, treatment satisfaction with anti-vascular endothelial growth factor (anti-VEGFs) was assessed in patients with wAMD in Italy.
    UNASSIGNED: This was a non-interventional, cross-sectional survey involving patients with wAMD receiving anti-VEGFs. The survey was administered through a virtual assistant via phone. Patients\' treatment satisfaction was assessed using a newly developed Novartis Tailored Treatment Satisfaction Questionnaire (NVS TTSQ) and the validated Macular Disease Treatment Satisfaction Questionnaire (MacTSQ).
    UNASSIGNED: Overall, 154 evaluable patients were enrolled in 5 centers across Italy. The mean (SD) age of the patients was 76.8 years (7.01). Overall treatment satisfaction score assessed by NVS TTSQ was 40.50 (7.11), with a mean of 9.97 (1.84) on the information domain and 22.98 (4.57) on the unmet need domain. Patients were satisfied with diagnosis communication (4.99 [1.30]), information provided on treatment administration (4.58 [1.49], range 0-6), the waiting room (4.40 [1.43]), and management of visits and injections at the center (5.14 [1.12]), general management of maculopathy at the center (5.22 [1.01]). Patients were not satisfied with their independence in terms of disease management (2.56 [2.45]); they would like additional information about the disease (5.38 [1.03]) and to discuss the injection procedures (4.02 [1.94]) with already-treated patients. The overall treatment satisfaction score on MacTSQ scale was 55.84 (10.13).
    UNASSIGNED: Patients with wAMD are satisfied with the overall management of their disease in Italy. However, patients would like to have more information on prognosis and management of the disease.
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  • 文章类型: Journal Article
    背景:免疫球蛋白G替代疗法(IgRT),静脉内(IV)和皮下(SC)途径,是治疗原发性免疫缺陷(PID)的关键。近年来,促进皮下免疫球蛋白(fSCIG),rHuPH20和10%IgG的组合已成为一种结合IV和SC优点的递送方法。
    方法:在观察性前瞻性队列中,我们调查了来自5个PID中心的PID患者使用fSCIG长达12个月的经历.我们使用患者/护理人员和医生报告的指标评估了这种治疗的有效性和安全性。此外,我们分析了患者治疗满意度(TSQM-9)和生活质量(QoL).
    结果:我们招募了29名患者(22名儿科患者和7名成人患者;14名女性和15名男性患者;(中位数:15,最小-最大时间:2-40.9年),这些患者作为IgRT-naive(n=1),从常规快速推送10%SCIG(n=6)或IVIG(n=22)切换。在参与者中,19(65%)表现出抗体缺乏,8(27%)联合免疫缺陷,和2(7%)免疫失调。值得注意的是,在所有以前的IgRTs和fSCIG下都达到了靶向的谷值免疫球蛋白G水平.没有严重的全身药物不良反应记录,尽管存在普遍的局部(%86.45)和轻微的全身(%26.45)不良反应,但fSCIG仍观察到.由于轻微的全身症状,2例患者从fSCIG改为10%SCIG。患者满意度调查显示,与基线相比,2-4个月(p=0.102);5-8个月(p=0.006)和9-12个月(p<0.001)显着增加。在QoL调查中没有观察到显著的趋势。
    结论:fSCIG在管理PID方面表现出可接受的耐受性和有效性,此外患者对IgRT的药物满意度也显著提高。尽管存在局部反应,但已确定的益处仍支持该疗法的继续。
    BACKGROUND: Immunoglobulin G replacement therapy (IgRT), intravenous (IV) and subcutaneous (SC) routes, is pivotal in treatment of primary immunodeficiencies (PID). In recent years, facilitated subcutaneous immunoglobulin (fSCIG), a combination of rHuPH20 and 10% IgG has emerged as a delivery method to combine advantages of both IV and SC.
    METHODS: In an observational prospective cohort, we investigated patient experience with fSCIG in PID patients from 5 PID centers for up to 12 months. We assessed the efficacy and safety of this treatment with patient/caregiver- and physician-reported indicators. Additionally, we analyzed patient treatment satisfaction (TSQM-9) and quality of life (QoL).
    RESULTS: We enrolled 29 patients (22 pediatric and 7 adults; 14 females and 15 males; (median: 15, min-max: 2-40.9 years) who initiated fSCIG as IgRT-naive (n = 1), switched from conventional rapid-push 10% SCIG (n = 6) or IVIG (n = 22). Among the participants, 19 (65%) exhibited antibody deficiencies, 8 (27%) combined immunodeficiencies, and 2 (7%) immune dysregulations. Remarkably, targeted trough immunoglobulin G levels were achieved under all previous IgRTs as well as fSCIG. No severe systemic adverse drug reactions were documented, despite prevalent local (%86.45) and mild systemic (%26.45) adverse reactions were noted with fSCIG. Due to mild systemic symptoms, 2 patients switched from fSCIG to 10% SCIG. The patient satisfaction survey revealed a notable increase at 2-4th (p = 0.102); 5-8th (p = 0.006) and 9-12th (p < 0.001) months compared to the baseline. No significant trends were observed in QoL surveys.
    CONCLUSIONS: fSCIG demonstrates admissable tolerability and efficacy in managing PIDs in addition to notable increase of patients\' drug satisfaction with IgRT. The identified benefits support the continuation of this therapy despite the local reactions.
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  • 文章类型: Journal Article
    对于复杂的尿道狭窄,确定性会阴尿道造口术后,缺乏长期客观和患者报告的结果。我们的目标是根据我们在重建转诊中心15年的经验,确定会阴尿道造口术的长期成功。
    确定了在2009年至2023年之间进行会阴尿道造口术的患者。进行了全面的长期随访,通过使用经过验证的问卷评估客观结果(无再治疗生存期)和主观结果。此外,为我们的发现提供进一步的背景,我们对所有报告会阴尿道造口术后结局的研究进行了范围审查.
    在76名患者中,55%有医源性狭窄,82%的人以前接受过尿道干预。在中位随访55个月时,无再治疗生存率为84%,16%的患者经历会阴尿道造口术复发性狭窄。患者报告的结果显示排尿功能(USSPROMLUTS评分)和尿失禁(ICIQ-UISF)总体令人满意,中位数为4分(范围0-24)和0分(范围0-21),但性功能评分呈双峰分布(IIEF-EF中位数:3.5;MSHQ-Ej中位数:21)。治疗满意度非常高,ICIQ-满意度结果评分中位数为21分(范围0-24)。范围审查显示,成功率从51%到95%不等,突出了由于不同的成功定义和患者病例组合而导致的比较困难。
    会阴尿道造口术为复杂的前尿道狭窄提供了有效的治疗方法,患者满意度高,保留失禁功能,和有利的排尿结果。它为老年和合并症患者提供了一个可行的选择,特别是在对预期结果和潜在风险进行全面咨询之后。
    UNASSIGNED: There is a paucity of long-term objective and patient-reported outcomes after definitive perineal urethrostomy for complex urethral strictures. Our objective is to determine comprehensive long-term success of perineal urethrostomy with our 15-year experience at a reconstructive referral center.
    UNASSIGNED: Patients who underwent perineal urethrostomy between 2009 and 2023 were identified. A comprehensive long-term follow-up was conducted, evaluating both objective outcomes (retreatment-free survival) and subjective outcomes through the use of validated questionnaires. Additionally, to provide further context for our findings, we conducted a scoping review of all studies reporting outcomes following perineal urethrostomy.
    UNASSIGNED: Among 76 patients, 55% had iatrogenic strictures, with 82% previously undergoing urethral interventions. At a median follow-up of 55 months, retreatment-free survival was 84%, with 16% of patients experiencing perineal urethrostomy recurrent stenosis. Patient-reported outcomes revealed a generally satisfactory voiding function (Urethral Stricture Surgery patient-reported outcome measure Lower Urinary Tract Symptoms score) and continence (International Consultation on Incontinence Questionnaire-Urinary Incontinence Short Form), with median scores of 4 (range 0-24) and 0 (range 0-21), but with bimodal distributions of sexual function scores (median International Index of Erectile Function-Erectile Function domain: 3.5; median Male Sexual Health Questionnaire-Ejaculation Scale: 21). Treatment satisfaction was very high with a median International Consultation on Incontinence Questionnaire-Satisfaction outcome score of 21 (range 0-24). The scoping review revealed varying success rates ranging from 51% to 95%, highlighting difficulties in comparison due to variable success definitions and patient case mix.
    UNASSIGNED: Perineal urethrostomy provides effective treatment for complex anterior urethral strictures, with high patient satisfaction, preserved continence function, and favorable voiding outcomes. It presents a viable option for older and comorbid patients, especially after thorough counseling on expected outcomes and potential risks.
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