quality of life (QoL)

生活质量 ( QoL )
  • 文章类型: Journal Article
    自5-FU治疗mCRC(转移性结直肠癌)的初始试验开始以来的近六十年中,我们对病理生理学的逐步理解,遗传学,与mCRC相关的外科技术为引入新的治疗方式铺平了道路。这些进步不仅提高了总体生存率,而且还积极影响了受影响个体的生活质量(QoL)。尽管在过去的二十年中,化疗的发展取得了显著进展,免疫疗法,和靶向治疗,mCRC仍然是一种不治之症,5年生存率为14%。在这次全面审查中,我们的主要目标是根据国家综合癌症网络(NCCN)提供的最新指南,概述mCRC治疗方法,美国临床肿瘤学会(ASCO),和美国结肠和直肠外科医师协会(ASCRS)。重点放在概述包括化疗在内的治疗方法上,免疫疗法,靶向治疗,以及手术在管理mCRC中的作用。此外,我们的评论探讨了开发新疗法的潜在途径,提供了对未来的替代途径的一瞥,这些途径具有推进该领域的潜力。
    Over the course of nearly six decades since the inception of initial trials involving 5-FU in the treatment of mCRC (metastatic colorectal cancer), our progressive comprehension of the pathophysiology, genetics, and surgical techniques related to mCRC has paved the way for the introduction of novel therapeutic modalities. These advancements not only have augmented the overall survival but have also positively impacted the quality of life (QoL) for affected individuals. Despite the remarkable progress made in the last two decades in the development of chemotherapy, immunotherapy, and target therapies, mCRC remains an incurable disease, with a 5-year survival rate of 14%. In this comprehensive review, our primary goal is to present an overview of mCRC treatment methods following the latest guidelines provided by the National Comprehensive Cancer Network (NCCN), the American Society of Clinical Oncology (ASCO), and the American Society of Colon and Rectal Surgeons (ASCRS). Emphasis has been placed on outlining treatment approaches encompassing chemotherapy, immunotherapy, targeted therapy, and surgery\'s role in managing mCRC. Furthermore, our review delves into prospective avenues for developing new therapies, offering a glimpse into the future of alternative pathways that hold potential for advancing the field.
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  • 文章类型: Journal Article
    在原发性不可切除或复发性铂耐药的卵巢癌(OC)腹膜转移(PM)的女性中,关于顺铂和多柔比星加压腹膜内雾化化疗(PIPACC/D)的数据很少。我们评估了生存率,组织学和细胞学反应,这些患者PIPACC/D后的生活质量(QoL)和毒性。
    前瞻性PIPAC-OPC1和-OPC2研究的患者回顾性分析。通过腹膜回归分级评分(PRGS)评估组织学反应。在基线和第三次PIPAC或60天后收集QoL问卷。收集不良事件直到最后一次PIPAC后30天。根据治疗意向分析人口统计学和生存数据。回应,根据方案(≥1PIPAC)分析QoL和毒性。
    29名患者被纳入。5名患者(17%)在PIPAC1无法进入。一名患者因PIPAC1处肝转移而被排除。因此,23例患者有76个PIPAC(中位数2,范围1-12)。PIPAC1的中位总生存期为8.2个月(95%CI4.4-10.3)。有22例患者的活检数据,7例(32%)患者在PIPAC3时出现主要/完全组织学反应(PRGS≤2)。没有细胞学转化。症状和功能评分恶化,而情绪得分有所改善。3例患者出现严重不良反应(2次肠梗阻,1次肺栓塞);未观察到危及生命的反应或治疗相关的死亡率。
    PIPACC/D是可行的,并且在相当比例的OC铂耐药PM患者中诱导组织学消退。需要更大规模的研究来评估对生存的影响。
    UNASSIGNED: There are few data on Pressurized IntraPeritoneal Aerosol Chemotherapy with cisplatin and doxorubicin (PIPAC C/D) in women with primary unresectable or recurrent platinum-resistant peritoneal metastasis (PM) from ovarian cancer (OC). We evaluated survival, histological and cytological response, Quality of Life (QoL) and toxicity after PIPAC C/D in these patients.
    UNASSIGNED: Retrospective analysis of patients from the prospective PIPAC-OPC1 and -OPC2 studies. The histological response was evaluated by the Peritoneal Regression Grading Score (PRGS). QoL questionnaires were collected at baseline and after third PIPAC or 60 days. Adverse events were collected until 30 days after the last PIPAC. Demographic and survival data were analysed based on intention to treat. Response, QoL and toxicity were analysed per protocol (≥1 PIPAC).
    UNASSIGNED: Twenty-nine patients were included. Five patients (17 %) were non-accessible at PIPAC 1. One patient was excluded due to liver metastases at PIPAC 1. Thus, 23 patients had 76 PIPACs (median 2, range 1-12). Median overall survival was 8.2 months (95 % CI 4.4-10.3) from PIPAC 1. Biopsy data were available for 22 patients, and seven (32 %) patients had a major/complete histological response (PRGS≤2) at PIPAC 3. No cytological conversions were registered. Symptoms and function scores worsened, while emotional scores improved. Three patients had severe adverse reactions (two ileus, one pulmonary embolism); no life-threatening reactions or treatment-related mortality was observed.
    UNASSIGNED: PIPAC C/D was feasible and induced histological regression in a substantial proportion of patients with platinum-resistant PM from OC. Larger studies are needed to evaluate impact on survival.
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  • 文章类型: Journal Article
    背景:痴呆症的护理是一个动态的多维过程。为了全面了解痴呆症患者的非正式护理(PLWD),评估非正式护理人员的生活质量(QoL)至关重要。
    目的:评估护理接受者关系类型是否可以预测PLWD非正式护理人员在两年期间的QoL变化。
    方法:这是对纵向数据的二次分析。数据来自国家健康与老龄化趋势研究(NHATS)和国家护理研究(NSOC)的两波相关数据(2015:NHATSR5&NSOCII;2017:NHATSR7&NSOCIII)。照顾者分为配偶,成年子女,\"其他\"看护者和\"多个\"看护者。通过负面情绪负担(NEB)评估QoL,积极的情感利益和社会压力(SS)。广义估计方程模型用于检查不同类型关系的护理人员QoL结果随时间的变化。
    结果:关于,包括与601PLWD相关的882名护理人员。在调整护理人员的社会人口统计学后,“其他”照顾者的NEB和SS风险低于配偶照顾者(OR=0.34,P=0.003,95CI[0.17,0.70];OR=0.37,P=0.019,95CI0.16,0.85],分别),和PLWD的痴呆状态不会改变这些显著性(OR=0.33,P=0.003,95CI[0.16,0.68];OR=0.31,P=0.005,95CI[0.14,0.71],分别)。
    结论:研究表明,随着时间的推移,配偶照顾者面临更高的NEB和SS风险,强调迫切需要为PLWD的非正式护理人员提供无障碍和有效的支持,尤其是照顾配偶的人.
    Dementia caregiving is a dynamic and multidimensional process. To gain a comprehensive understanding of informal caregiving for people living with dementia (PLWD), it is pivotal to assess the quality of life (QoL) of informal caregivers.
    To evaluate whether the care-recipient relationship type predicts changes in the QoL of informal caregivers of PLWD over a two-year period.
    This was a secondary analysis of longitudinal data. The data were drawn from two waves of linked data from the National Health and Aging Trends Study (NHATS) and the National Study of Caregiving (NSOC) (2015: NHATS R5 & NSOC II; 2017: NHATS R7 & NSOC III). Caregivers were categorized into spousal, adult-child, \"other\" caregiver and \"multiple\" caregivers. QoL was assessed through negative emotional burden (NEB), positive emotional benefits and social strain (SS). Generalized estimating equation modelling was used to examine changes in caregivers\' QoL outcomes across types of relationship over time.
    About, 882 caregivers were included who linked to 601 PLWD. After adjusting caregivers\' socio-demographics, \"other\" caregivers had lower risk of NEB and SS than spousal caregivers (OR = 0.34, P = 0.003, 95%CI [0.17, 0.70]; OR = 0.37, P = 0.019, 95%CI 0.16, 0.85], respectively), and PLWD\'s dementia status would not change these significance (OR = 0.33, P = 0.003, 95%CI [0.16, 0.68]; OR = 0.31, P = 0.005, 95%CI [0.14, 0.71], respectively).
    The study demonstrates that spousal caregivers face a higher risk of NEB and SS over time, underscoring the pressing need to offer accessible and effective support for informal caregivers of PLWD, especially those caring for their spouses.
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  • 文章类型: Journal Article
    背景:红细胞生成性原卟啉症(EPP)和X连锁原卟啉症(XLP)是罕见的血红素生物合成障碍,其特征是严重的皮肤光毒性。Afamelanotide,一种α-黑素细胞刺激激素类似物,是唯一批准的治疗原卟啉症的方法,可提高光耐受性和改善生活质量(QoL)。然而,在美国发表的阿非美拉诺肽的经验有限。
    方法:这里,我们报告了从2021年到2022年在马萨诸塞州总医院卟啉病中心接受至少一剂阿非美拉诺肽治疗的所有成年人.光毒性症状发作时间的变化,QoL,在使用阿非美拉诺肽治疗之前和期间评估了实验室参数。
    结果:共纳入29例原卟啉患者,其中26人(72.2%)接受了≥2次阿夫拉诺肽植入物。在接受≥2次植入物的患者中,阳光照射后症状发作的中位时间为12.5分钟(IQR,5-20)在开始阿非美拉诺肽之前和120分钟(IQR,60-240)治疗后(p<0.001)。使用两种QoL工具测量了afamelanotide治疗期间QoL的改善,在这两种仪器之间观察到良好的相关性。最后,我们发现无金属红细胞原卟啉的中位数水平没有改善,血浆原卟啉,或在开始阿非美拉诺肽治疗之前的肝脏生物化学。
    结论:这项研究强调了阿非美拉诺肽与光耐受性和QoL相关的显着临床益处,虽然没有改善原卟啉水平或肝功能的措施。
    BACKGROUND: Erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP) are rare disorders of heme biosynthesis characterized by severe cutaneous phototoxicity. Afamelanotide, an α-melanocyte-stimulating hormone analogue, is the only approved treatment for protoporphyria and leads to increased light tolerance and improved quality of life (QoL). However, published experience with afamelanotide in the US is limited.
    METHODS: Here, we report on all adults who received at least one dose of afamelanotide at the Massachusetts General Hospital Porphyria Center from 2021 to 2022. Changes in the time to phototoxic symptom onset, QoL, and laboratory parameters were assessed before and during treatment with afamelanotide.
    RESULTS: A total of 29 patients with protoporphyria were included, 26 of whom (72.2%) received ≥2 afamelanotide implants. Among the patients who received ≥2 implants, the median time to symptom onset following sunlight exposure was 12.5 min (IQR, 5-20) prior to the initiation of afamelanotide and 120 min (IQR, 60-240) after treatment (p < 0.001). Improvements in QoL during afamelanotide treatment were measured using two QoL tools, with good correlation observed between these two instruments. Finally, we found no improvements in the median levels of metal-free erythrocyte protoporphyrin, plasma protoporphyrin, or liver biochemistries during versus prior to the initiation of afamelanotide treatment.
    CONCLUSIONS: This study highlights a dramatic clinical benefit of afamelanotide in relation to light tolerance and QoL in protoporphyria, albeit without improvement in protoporphyrin levels or measures of liver function.
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  • 文章类型: Journal Article
    目的:性困扰会影响乳腺癌患者的生活质量(QoL),但在标准护理途径中往往被忽视。这项研究评估了荷兰乳腺癌患者的性困扰的患病率和因素,将它们与普通人群相比,并从患者和医疗保健专业人员(HCP)的角度探讨了如何在临床环境中讨论性困扰。
    方法:将包含女性性困扰量表(FSDS)和人口统计学变量的问卷分发给患有乳腺癌的女性。使用Mann-WhitneyU检验评估了乳腺癌对性困扰的影响。使用多变量线性回归分析与FSDS相关的变量。性态度和信念调查(SABS)已发送给HCP。
    结果:与荷兰非乳腺癌队列相比,乳腺癌患者报告的性困扰明显更高,分别为16.38(SD11.81)和23.35(SD11.39)。与较高性困扰相关的因素是心理合并症,身体图像比例,10年前被诊断出来.没有像患者需要的那样经常讨论性困扰。解决性困扰的障碍是时间限制,HCP对他们解决性困扰的能力充满信心,以及谁负责启动的不确定性。
    结论:与荷兰人群相比,乳腺癌患者表现出更高的性困扰。然而,这个问题并不经常在咨询室讨论。虽然已经确定了一些障碍,这项研究强调了进一步探索将有关性困扰的讨论纳入常规护理以改善乳腺癌患者QoL的障碍的重要性.
    OBJECTIVE: Sexual distress impacts the quality of life (QoL) of breast cancer patients but is often overlooked in standard care pathways. This study evaluated the prevalence and factors of sexual distress among Dutch breast cancer patients, compared them to the general population, and explored how sexual distress is discussed in clinical settings from the perspectives of patients and healthcare professionals (HCPs).
    METHODS: Questionnaires containing the Female Sexual Distress Scale (FSDS) and demographic variables were distributed to women with breast cancer. The effect of breast cancer on sexual distress was assessed with a Mann-Whitney U test. Multivariable linear regression was used to analyze variables associated with FSDS. The Sexuality Attitudes and Beliefs Survey (SABS) was sent to HCPs.
    RESULTS: Breast cancer patients reported significantly higher sexual distress compared to a Dutch non-breast cancer cohort, respectively 16.38 (SD 11.81) and 23.35 (SD 11.39). Factors associated with higher sexual distress were psychological comorbidities, the body image scale, and being diagnosed >10 years ago. Sexual distress was not discussed as often as patients needed. Barriers to addressing sexual distress were time constraints, HCPs\' confidence in their ability to address sexual distress, and uncertainty about who is responsible for initiation.
    CONCLUSIONS: Breast cancer patients showed significantly higher sexual distress compared to the Dutch population. However, it was not frequently addressed in the consultation room. While some barriers have been identified, this study highlights the importance of further exploring obstacles to integrating discussions about sexual distress into routine care to improve QoL of breast cancer patients.
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  • 文章类型: Journal Article
    背景:虽然基于音乐的治疗(MBT)已被证明可以改善多发性硬化症(MS)的运动和非运动特征,探戈的好处从未被评估过。
    目的:为了评估探戈课程对生活质量(QoL)的益处,心情,疲劳,步态,balance,MS患者对认知障碍和性行为的感知
    方法:7名参与者(年龄41.14±14.27岁,疾病持续时间14.14±7.6年),各自的合作伙伴每周进行一小时的课程,共20周。参与者有早期MS(EDSS<3.5)。对他们进行情绪评估(ZUNG评定量表;贝克抑郁量表-II);平衡(Berg平衡测试;Tinetti量表),认知(MS神经心理学筛查问卷),SD(多发性硬化症亲密关系和性行为问卷),疲劳(疲劳严重程度量表)和QoL(36项简表调查)。
    结果:变更前评分的分组比较显示,所有结果指标均有改善,这在情绪上很重要,SD,认知和QoL。
    结论:探戈课程为pwMS提供了好处,尤其是非运动症状。需要进行后续评估以确认这些影响的持久性。
    BACKGROUND: While music-based therapy (MBT) has been shown to improve motor and non-motor features in multiple sclerosis (MS), benefits of tango have never been assessed.
    OBJECTIVE: To evaluate the benefits of tango classes on quality of life (QoL), mood, fatigue, gait, balance, perception of cognitive disorder and sexuality in people with MS.
    METHODS: 7 participants (age 41.14 ± 14.27 years, disease duration 14.14 ± 7.6 years) and respective partners undertook one-hour weekly classes for 20 weeks. Participants had early-stage MS (EDSS<3.5). They were assessed for mood (ZUNG rating scale; Beck Depression Inventory -II); balance (Berg Balance Test; Tinetti scale), cognition (MS Neuropsychological Screening Questionnaire), SD (Multiple Sclerosis Intimacy and Sexuality Questionnaire), fatigue (Fatigue Severity Scale) and QoL (36-Item Short Form Survey).
    RESULTS: Group comparison of pre-post change scores showed a general improvement in all the outcome measures, which was significant in mood, SD, cognition and QoL.
    CONCLUSIONS: Tango classes provides benefits to pwMS, especially on non-motor symptoms. Follow-up assessment is required to confirm the durability of these effects.
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  • 文章类型: Journal Article
    骨转移是晚期癌症的常见和衰弱的后果,通常需要姑息性放射治疗(RT)来缓解疼痛。骨转移的再照射(reRT)通常被认为是在最初的RT疗程后缺乏疼痛缓解后,在对最初的放射治疗过程产生部分但不令人满意的疼痛反应后,或在对初始疗程完全或部分疼痛反应后疼痛复发。NCICCTGSC.20试验,具有里程碑意义的多中心,随机化,非致盲,非劣性对照试验,解决了该患者人群中reRT的最佳剂量分割的关键问题。该试验比较了850例需要reRT的疼痛性骨转移患者中单个8Gy部分与总计20Gy的多个部分的疗效和毒性。主要终点是2个月时的总体疼痛反应,在次要终点的生活质量(QoL)测量中,功能干扰,使用患者报告的问卷和欧洲癌症研究与治疗组织(EORTC)QLQ-C30评估毒性谱。意向治疗分析显示,两臂之间的疼痛反应没有显着差异,符合预先规定的非劣效性标准。符合方案的分析表明,接受多个部分的患者子集具有潜在的益处,尽管这在统计学上并不稳健。急性毒性在多部分臂中更为普遍,对患者舒适度和医疗保健利用率有影响。重要的是,reRT的应答者报告了功能干扰和QoL的显着改善。该试验的发现支持使用以患者为中心的方法来姑息性RT,强调单一8Gy部分作为毒性更低且更方便的治疗选择的可行性,尽管考虑到患者的个别情况。这些结果对临床实践具有重要意义,在疼痛性骨转移姑息治疗期间,有可能减轻医疗负担,同时优化患者便利性。
    Bone metastases are a common and debilitating consequence of advanced cancer, often necessitating palliative radiation therapy (RT) for pain relief. Reirradiation (reRT) of bone metastases is often considered after lack of pain relief following an initial course of RT, after a partial but unsatisfying pain response to an initial course of radiotherapy, or after pain recurrence following a complete or partial pain response to an initial course of RT. The NCIC CTG SC.20 trial, a landmark multicenter, randomized, non-blinded, controlled non-inferiority trial, addressed the critical question of optimal dose fractionation for reRT in this patient population. This trial compared the efficacy and toxicity of a single 8 Gy fraction to multiple fractions totaling 20 Gy in 850 patients with painful bone metastases requiring reRT. The primary endpoint was overall pain response at 2 months, with secondary endpoints of quality of life (QoL) measures, functional interference, and toxicity profiles assessed using patient-reported questionnaires and the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30. The intention-to-treat analysis revealed no significant difference in pain response between the two arms, meeting the pre-specified non-inferiority criteria. The per-protocol analysis suggested a potential benefit for a subset of patients receiving multiple fractions, although this was not statistically robust. Acute toxicities were more prevalent in the multiple fractions arm, with implications for patient comfort and healthcare utilization. Importantly, responders to reRT reported significant improvements in functional interference and QoL. The trial\'s findings support the use of a patient-centric approach to palliative RT, highlighting the viability of a single 8 Gy fraction as a less toxic and more convenient treatment option, albeit with consideration for individual patient circumstances. These results have significant implications for clinical practice, potentially reducing healthcare burdens while optimizing patient convenience during palliative care for painful bone metastases.
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  • 文章类型: Journal Article
    背景:评估印度人口口腔癌患者生活质量(QoL)的研究很少。口腔鳞状细胞癌(OSCC)患者的定期随访和QoL评估可以帮助制定全面的支持策略,以改善其QoL结果。目的和目的本研究旨在评估口腔癌患者的QoL并将QoL与人口统计学和治疗参数相关联。材料和方法该研究包括先前向口腔颌面外科报告的口腔癌患者。在治疗前后使用EORTCQLQ-C30和QLQ-HN43问卷进行QoL评估。临床人口统计细节,治疗数据,后续数据,和记录的平均QoL是从牙科信息档案软件中的患者记录中获取的。在治疗前和间隔一个月进行QoL评估,三个月,六个月,12个月,24个月,治疗后36个月。使用IBMSPSSStatisticsforWindows进行统计分析,版本23(2015年发布;IBMCorp.,Armonk,纽约,美国)。使用重复测量方差分析(ANOVA)来比较平均QoL评分和各个间隔的随访频率。卡方检验评估了性别之间平均QoL的差异,在不同的地点,以及初级闭合和移植物放置之间。显著性设定为小于0.05的p值。结果本科共报告90例OSCC患者。对90例(100%)患者进行了术前QoL评估。在这些病人中,41例(45%)已进行手术.41名患者中有25名(60%)对定期随访有反应,并对这些患者进行QoL评估。术后即刻阶段后,只有12例(48%)在3个月后报告.只有6人(24%)接受了12个月的随访,5人(20%)进行了为期两年的随访,1人(4%)接受了3年随访。OSCC治疗后随访次数持续减少(p=0.00)。治疗前,平均QoL指数为4.64。女性的术前QoL略高于男性,为4.76。得分为4.67(p=0.157)。OSCC治疗后立即,注意到QoL分数下降,平均得分为4.25(p=0.32)。切除后接受初次闭合的患者的术后QoL平均得分为4.9,而接受移植物放置的患者的平均得分为4.6(p=0.157)。结论本研究强调了口腔癌对患者生活质量的持久影响,并强调需要进行持续研究以探索有助于持续改善QoL的具体干预措施。它强调个性化,这类患者的整体护理方法。
    Background Studies evaluating the quality of life (QoL) among oral cancer patients in the Indian population are scarce. Regular follow-ups and QoL assessment in oral squamous cell carcinoma (OSCC) patients can aid in comprehensive support strategies to improve their QoL outcomes. Aim and objectives This study aimed to assess the QoL of oral cancer patients and correlate the QoL with demographic and treatment parameters.  Materials and methods The study included oral cancer patients who had previously reported to the Department of Oral and Maxillofacial Surgery. QoL assessment was done using the EORTC QLQ-C30 and QLQ-HN43 questionnaires before and after treatment. The clinico-demographic details, treatment data, follow-up data, and recorded mean QoL were procured from the patient records in Dental Information Archival Software. Assessment of QoL was done before treatment and at intervals of one month, three months, six months, 12 months, 24 months, and 36 months postoperatively after treatment. Statistical analysis was performed using IBM SPSS Statistics for Windows, Version 23 (released 2015; IBM Corp., Armonk, New York, United States). A repeated measures analysis of variance (ANOVA) was utilized for comparing the average QoL scores and frequency of follow-ups across various intervals. Chi-square tests assessed differences in mean QoL among genders, across different sites, and between primary closure and graft placement. The significance was set at a p-value of less than 0.05. Results A total of 90 OSCC patients had reported to the department. A preoperative assessment of QoL was done for 90 (100%) patients. Out of these patients, surgery has been performed on 41 (45%). Twenty-five out of 41 (60%) patients had responded to regular follow-up, and QoL was assessed for these patients. After the immediate postoperative phase, only 12 (48%) had reported after three months. Only six (24%) had a 12-month follow-up, five (20%) had a two-year follow-up, and one (4%) had a three-year follow-up. There was a constant decrease in the number of follow-ups after the treatment of OSCC (p=0.00). Prior to treatment, the mean QoL index was 4.64. Females had a slightly higher preoperative QoL of 4.76 compared to males, with a score of 4.67 (p=0.157). Immediately after the treatment of OSCC, a decline in QoL scores was noted, with a mean score of 4.25 (p=0.32). Patients who underwent primary closure after excision had a mean post-op QoL score of 4.9, while patients who underwent graft placement had a mean score of 4.6 (p=0.157). Conclusion This study highlights the enduring impact of oral cancer on a patient\'s quality of life and emphasizes the need for ongoing research to explore specific interventions that can contribute to sustained improvement in QoL. It emphasizes personalized, holistic care approaches for such patients.
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  • 文章类型: Journal Article
    背景:视力在儿童的神经运动中起着关键作用,认知和社会发展。视力障碍儿童在后期达到发育里程碑,并且患心理障碍和社交退缩的风险更高。
    目的:我们进行了范围审查,以总结评估视力障碍对生活质量的影响的最常用工具,儿童和青少年的功能和参与。此外,讨论了纳入研究的主要发现。
    方法:我们搜索了评估生活质量的论文,在2000年至2023年期间,对0至18岁视力障碍儿童和青少年的功能和参与进行了研究。
    结果:总计,69项研究符合纳入标准,被纳入综述。儿童自我报告,使用护理人员代理和自我报告问卷以及访谈。结果显示,生活质量,视力障碍的儿童和青少年的功能和参与显着降低,并且影响取决于不同的因素(例如,损害的严重程度,年龄)。
    结论:考虑到视力损害对生活质量的显著影响,对这些人口的运作和参与,开发综合和多维评估计划是至关重要的,该计划应考虑不同的生活环境来评估视觉障碍对这些维度的影响(例如,家庭,学校,休闲时间)。这篇论文有什么进展?:本综述旨在概述视力障碍对生活质量的影响,儿童和青少年的功能和参与。我们假设了一种生物心理社会观点,根据国际功能分类对健康的定义,残疾与健康(世卫组织,2001),考虑到身体的功能和结构,功能,参与和环境因素动态相互作用来定义健康,或者疾病,一个人在人生某个时刻的地位。我们报道了最常用的评估生活质量的工具,参与,和功能,对患者报告的结果措施和自我报告措施有特别的兴趣。通过报告使用的不同仪器,我们对可用于临床和研究领域的可用工具进行了广泛的概述,以评估生活质量,在这个群体中的运作和参与。此外,对现有文献的回顾使我们能够证明,这些维度受到视力损害的负面影响,因此应在评估计划中加以考虑.具体来说,有必要提供更综合的评估计划,调查视力障碍对儿童和青少年的社会和情感健康的影响,日常运作和社会关系,考虑到他们和照顾者的主观经验,教师,卫生保健专业人员,和其他相关的成年人参与他们的生活。此外,计划和实施多维评估计划至关重要,该计划考虑了视觉障碍对生活所有领域的不同影响.
    BACKGROUND: Vision has a key role in children\'s neuromotor, cognitive and social development. Children with visual impairment attain developmental milestones at later stages and are at higher risk of developing psychological disorders and social withdrawn.
    OBJECTIVE: We performed a scoping review to summarize the mostly used instruments assessing the impact of visual impairment on quality of life, functioning and participation of children and adolescents. In addition, the main findings of the included studies are discussed.
    METHODS: We searched for papers assessing quality of life, functioning and participation of children and adolescents with visual impairment from 0 to 18 years old conducted between 2000 and 2023.
    RESULTS: In total, 69 studies met the inclusion criteria and were included in the review. Child self-report, caregivers-proxy and self-report questionnaires as well as interviews were used. The results showed that quality of life, functioning and participation are significantly reduced in children and adolescents with visual impairment, and that the impact depends on different factors (e.g., severity of the impairment, age).
    CONCLUSIONS: Considering the significant impact of visual impairment on quality of life, functioning and participation on this population, it is fundamental to develop integrated and multi-dimensional assessment programs that evaluate the impact of visual impairment on those dimensions considering different contexts of life (e.g., family, school, leisure time). WHAT THIS PAPER ADDS?: The present review aims to give an overview of what is known about the impact of visual impairment on quality of life, functioning and participation of children and adolescents. We assumed a biopsychosocial perspective which, in line with the definition of health by the International Classification of Functioning, Disability and Health (WHO, 2001), considered how body functions and structures, functioning, participation and environmental factors dynamically interact to define the health, or the disease, status of a person at a certain moment of life. We reported the most used instruments for the assessment of quality of life, participation, and functioning, with a specific interest on Patient-Reported Outcome Measures and self-report measures. By reporting the different instruments used, we gave a broad overview about the available tools that can be used in clinical as well as in research field to assess quality of life, functioning and participation in this population. Additionally, the review of the existing literature allowed us to demonstrate that those dimensions are negatively impacted by visual impairment and thus they should be considered in the assessment programs. Specifically, there is the need to provide more integrated assessment programs that investigate the impact of visual impairment on children and adolescents\' social and emotional wellbeing, everyday functioning and social relationship, considering their subjective experience together with the one of caregivers, teachers, health care professionals, and other relevant adults involved in their life. Additionally, it is essential to plan and implement multidimensional assessment programs that consider how all areas of life are differently impacted by visual impairment.
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  • 文章类型: Journal Article
    背景高能量创伤引起的骨盆骨折,例如机动车事故或从相当高的高度坠落,通常导致骶骨骨折。大约四分之一的骶骨骨折与神经损伤有关,忽略这些骨折可能会导致神经系统问题,如性功能障碍,下肢功能受阻,泌尿和直肠困难。这项研究的主要目的是介绍我们的患者组接受手术或非手术治疗的骶骨骨折,随访期为一年,并评估其功能结果。方法本研究是对Apex创伤中心连续系列患者前瞻性收集的数据的回顾性分析。SanjayGandhi医学科学研究所研究生,勒克瑙.研究了从2018年至2023年连续24例(17-55岁)手术或非手术治疗的骶骨骨折患者。共有20名患者接受随访问卷,20名患者参加了体检。最终随访时间平均27.19个月(范围=12-57个月)。收集每位病人的个人资料,包括性别,年龄,合并症,伴随的伤害,损伤机制,断裂模式/分类,手术或非手术治疗,其他手术,手术长度,住院时间,不良事件,并发症,神经和/或运动障碍,肠和膀胱功能,和死亡率。在至少一年的随访中,Majeed得分,Oswestry残疾指数(ODI)问卷,和长臂猿的分类进行了评估。结果所有骨折均愈合。5名患者表现出神经衰弱,三名患者只有感觉异常,两名患者下肢无力。平均Majeed评分为75.4,代表中等临床结果。最终ODI评分平均为10.6分,代表骶骨骨折患者轻度残疾。总的来说,40%的骶骨骨折与性功能障碍有关,30%的女性和50%的男性报告了这个问题。手术和保守治疗的骶骨骨折ODI评分差异无统计学意义(p>0.05)。神经功能缺损,和性功能障碍。结论男性和女性外伤性骶骨骨折患者在术后至少12个月内生活质量和性功能均显著下降。骶骨骨折与性功能障碍和肠/膀胱尿失禁的患病率增加有关。我们的研究结果表明,无论手术治疗还是保守治疗,骶骨骨折患者的功能结局和性功能障碍发生率相似。
    Background Pelvic fractures caused by high-energy trauma, such as motor vehicle accidents or falls from a considerable height, commonly lead to sacral fractures. Approximately a quarter of sacral fractures are linked to neurological injury, and overlooking these fractures may result in neurological issues such as sexual dysfunction, hindered lower limb functionality, and urinary and rectal difficulties. The main goal of this study is to introduce our patient group who underwent either operative or nonoperative treatment for sacral fractures, with a follow-up period of one year, and assess their functional outcomes. Methodology This is a retrospective review of prospectively collected data from a consecutive series of patients at the Apex Trauma Centre, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow. A consecutive series of 24 patients (17-55 years old) with sacral fractures treated either operatively or nonoperatively from 2018 to 2023 was studied. A total of 20 patients were available for follow-up questionnaires, and 20 patients participated in a physical examination. Time to final follow-up averaged 27.19 months (range = 12-57 months). The personal data of each patient was collected, including gender, age, comorbidities, concomitant injuries, mechanism of injury, fracture pattern/classification, surgical or nonsurgical treatment, other surgeries, length of surgery, length of hospital stays, adverse events, complications, neurologic and/or motor deficits, bowel and bladder function, and mortality. At a minimum one-year follow-up, the Majeed score, Oswestry Disability Index (ODI) questionnaire, and Gibbon\'s classification were assessed. Results All fractures were healed. Five patients showed neurological weakness, with three patients having only paresthesia and two patients having lower limb weakness. The mean Majeed score was 75.4, representing a moderate clinical outcome. Final ODI scores averaged 10.6, representing mild disability among patients with sacrum fractures. Overall, 40% of sacrum fractures were associated with sexual dysfunction, with 30% of females and 50% of males reporting this issue. There was no significant difference (p > 0.05) between operated and conservatively managed sacrum fractures concerning ODI scores, neurological deficit, and sexual dysfunction. Conclusions Both male and female patients with traumatic sacrum fractures experienced a significant decrease in their quality of life and sexual function at least 12 months after their surgery. Sacrum fractures are associated with an increased prevalence of sexual dysfunction and bowel/bladder incontinence. Our study findings indicate that patients with sacrum fractures experience similar functional outcomes and incidences of sexual dysfunction irrespective of whether they are managed operatively or conservatively.
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