unmet needs

未满足的需求
  • 文章类型: Journal Article
    未满足的医疗保健需求被定义为选择推迟或完全避免必要的医疗,尽管有需要,这可能会使当前状况恶化或导致新的健康问题。新兴的信息流行病可能是阻碍人们获取高质量健康信息的障碍,有助于在需要时寻求较低水平的医疗护理。
    我们评估了社交媒体上对健康错误和虚假信息的看法与未满足的医疗保健需求之间的关联。此外,我们评估了这种关系的机制,包括社交媒体使用的频率,医疗信托,医疗歧视。
    来自3964名活跃的成人社交媒体用户的数据,这些用户对2022年健康信息国家趋势调查6(HINTS6)做出了回应,具有全国代表性的调查,进行了分析。结果是医疗需求未得到满足,定义为延迟或未获得必要的医疗护理。预测变量是对社交媒体健康错误和虚假信息的感知,社交媒体使用的频率,对医疗保健系统的信任程度,以及在接受医疗保健时感知到的种族和族裔歧视。
    多变量逻辑回归模型表明,对大量社交媒体健康错误和虚假信息的感知(比值比[OR]1.40,95%CI1.07-1.82),日常使用社交媒体(OR1.34,95%CI1.01-1.79),低医疗信任(OR1.46,95%CI1.06-2.01),感知歧视(OR2.24,95%CI1.44-3.50)与未满足医疗护理需求的可能性较高显著相关.与日常社交媒体用户相比,每天不使用社交媒体且未感知到大量错误和虚假信息的成年人(24%;95%CI19%-30%)的需求较低(38%;95%CI32%-43%)。与其他三组相比,感知到大量错误和虚假信息且对医疗保健信任度低的成年人报告未满足需求的可能性最高(43%;95%CI38%-49%)。与没有经历过医疗服务歧视且没有经历过重大错误和虚假信息的成年人(29%;95%CI26%-32%)相比,感知到重大错误和虚假信息并经历过医疗服务歧视的成年人报告未满足需求的概率在统计学上显着较高(51%;95%CI40%-62%)。
    未满足的医疗需求在那些认为社交媒体错误和虚假信息有很大程度的个人中更高,尤其是那些每天使用社交媒体的人,不信任医疗保健系统,在接受医疗保健时经历过种族或族裔歧视。为了应对社交媒体错误和虚假信息对未满足的医疗保健需求的负面影响,公共卫生信息必须关注日常社交媒体用户,以及提高信任和减少卫生保健系统中的结构性种族主义。
    UNASSIGNED: Unmet need for health care is defined as choosing to postpone or completely avoid necessary medical treatment despite having a need for it, which can worsen current conditions or contribute to new health problems. The emerging infodemic can be a barrier that prevents people from accessing quality health information, contributing to lower levels of seeking medical care when needed.
    UNASSIGNED: We evaluated the association between perceptions of health mis- and disinformation on social media and unmet need for health care. In addition, we evaluated mechanisms for this relationship, including frequency of social media use, medical trust, and medical care discrimination.
    UNASSIGNED: Data from 3964 active adult social media users responding to the 2022 Health Information National Trends Survey 6 (HINTS 6), a nationally representative survey, were analyzed. The outcome was unmet need for medical care, defined as delaying or not getting the necessary medical care. The predictor variables were perception of social media health mis- and disinformation, frequency of social media use, level of trust in the health care system, and perceived racial and ethnic discrimination when receiving health care.
    UNASSIGNED: Multivariable logistic regression models indicated that perception of substantial social media health mis- and disinformation (odds ratio [OR] 1.40, 95% CI 1.07-1.82), daily use of social media (OR 1.34, 95% CI 1.01-1.79), low medical trust (OR 1.46, 95% CI 1.06-2.01), and perceived discrimination (OR 2.24, 95% CI 1.44-3.50) were significantly associated with a higher likelihood of unmet need for medical care. Unmet need among adults who did not use social media daily and who did not perceive substantial mis- and disinformation (24%; 95% CI 19%-30%) was lower compared to daily social media users who perceived substantial mis- and disinformation (38%; 95% CI 32%-43%). Adults who perceived substantial mis- and disinformation and had low trust in health care had the highest probability of reporting unmet need (43%; 95% CI 38%-49%) compared to the other three groups. Adults who perceived substantial mis- and disinformation and experienced medical care discrimination had a statistically significant higher probability of reporting unmet need (51%; 95% CI 40%-62%) compared to adults who did not experience medical care discrimination and did not perceive substantial mis- and disinformation (29%; 95% CI 26%-32%).
    UNASSIGNED: Unmet need for medical care was higher among individuals who perceived a substantial degree of social media mis- and disinformation, especially among those who used social media daily, did not trust the health care system, and experienced racial or ethnic discrimination when receiving health care. To counter the negative effects of social media mis- and disinformation on unmet need for health care, public health messaging must focus on daily social media users as well as improving trust and reducing structural racism in the health care system.
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  • 文章类型: Journal Article
    目的:癫痫需要多个医疗保健专家的持续医疗护理,专业设施,和社区护理。在西班牙,没有标准化的癫痫治疗方法。这项研究的目的是通过探索通过西班牙国家医疗保健系统(NHS)的患者旅程中的关键步骤和障碍,来确定影响提供高质量护理的因素。
    方法:使用神经学家的意见和经验进行了定性研究,护士,病人,和护理人员在讨论会议上分享。使用主题内容分析,相关的以目标为重点的陈述是根据讨论图中的预定问题编码的(即,关键步骤和障碍),并根据新出现的问题进行子编码。评估了主题饱和度和关键步骤/障碍的共同出现,以确定影响高质量护理交付的最相关因素。
    结果:65名利益相关者参加了讨论会议(36名神经科医生,10名护士,10名患者,和9名护理人员)。确定了患者旅程的六个关键步骤:紧急护理,诊断,药物治疗,后续行动,转介,和介入治疗。其中,随访是影响高质量患者护理交付的最相关步骤,其次是药物治疗和诊断。急诊护理被认为是一个热点步骤,在整个患者旅程中都会产生影响。沟通(HCP之间以及HCP与患者之间)是在患者旅程的几个阶段提供高质量护理的障碍,包括药物治疗,后续行动,转介,和介入治疗。资源可用性是诊断(特别是确认)的障碍,药物治疗(药物可用性),和转诊(缺乏专业人员和专业中心,和长长的等待名单)。
    结论:这是第一项研究,捕获了西班牙四个参与癫痫治疗的关键利益相关者的观点。我们提供了通过西班牙NHS的患者旅程的概述,并强调了从慢性角度改善以患者为中心的护理交付的机会。
    结论:癫痫患者可能需要长期的医疗护理。在西班牙,护理由一系列专科和非专科中心提供。在这项研究中,一组西班牙神经学家,护士,患者和护理人员确定了影响癫痫患者在西班牙NHS旅程的每个阶段提供高质量护理的障碍.针对医疗保健提供者的特定癫痫培训,诊断和治疗患者的适当资源,医护人员和患者之间的良好沟通被认为是为癫痫患者提供高质量护理的重要因素.
    OBJECTIVE: Epilepsy requires continuous medical attention from multiple healthcare specialists, specialized facilities, and community-based care. In Spain, there is no standardized approach to epilepsy care. The aim of this study was to identify the factors impacting on the delivery of high-quality care by exploring key steps and barriers along the patient journey through the Spanish National Healthcare System (NHS).
    METHODS: A qualitative study was conducted using opinions and experiences of neurologists, nurses, patients, and caregivers shared in discussion meetings. Using thematic content analyses, relevant aim-focused statements were coded according to prespecified issues in a discussion map (i.e., key steps and barriers), and sub-coded according to emerging issues. Thematic saturation and co-occurrence of key steps/barriers were evaluated to identify the most relevant factors impacting on the delivery of high-quality care.
    RESULTS: Sixty-five stakeholders took part in discussion meetings (36 neurologists, 10 nurses, 10 patients, and nine caregivers). Six key steps on the patient journey were identified: emergency care, diagnosis, drug therapy, follow-up, referral, and interventional treatment. Of these, follow-up was the most relevant step impacting on the delivery of high-quality patient care, followed by drug therapy and diagnosis. Emergency care was considered a hot-spot step with impact throughout the patient journey. Communication (among HCPs and between HCPs and patients) was a barrier to the delivery of high-quality care at several stages of the patient journey, including drug therapy, follow-up, referral, and interventional treatment. Resource availability was a barrier for diagnosis (especially for confirmation), drug therapy (drug availability), and referral (lack of professionals and specialized centers, and long waiting lists).
    CONCLUSIONS: This is the first study capturing perspectives of four key stakeholders involved in epilepsy care in Spain. We provide an overview of the patient journey through the Spanish NHS and highlight opportunities to improve the delivery of patient-centered care with a chronicity perspective.
    CONCLUSIONS: Patients with epilepsy may require prolonged medical care. In Spain, care is provided by a range of specialist and non-specialist centers. In this study, a team of Spanish neurologists, nurses, patients and caregivers identified barriers that affect the delivery of high-quality care for patients with epilepsy at each stage of their journey through the Spanish NHS. Specific epilepsy training for healthcare providers, appropriate resources for diagnosing and treating patients, and good communication between healthcare workers and patients were identified as important factors in providing high-quality care for patients with epilepsy.
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  • 文章类型: Journal Article
    背景:癌症是一种超越纯粹医学的疾病,深刻影响患者和家庭成员的日常生活。以前的研究表明,癌症的后果在患者生命结束时大大加重,在他们还必须努力满足许多未满足的需求的时候。这项研究的主要目的是更深入地了解这些需求,主要是在接近死亡的终末期癌症患者中。
    方法:在西班牙对生命末期的癌症患者(n=3)及其家庭成员(n=12)进行了半结构化访谈。使用定性主题分析和扎根理论方法对访谈结果进行了分析。
    结果:从探讨癌症患者在生命末期的需求和关注的访谈中出现了四个主要主题:(1)身体健康(2)情感健康(3)社会健康和(4),与信息和自主决策相关的需求。访谈还揭示了在此期间家庭成员的具体需求,即难以管理增加的照顾者负担和保持健康的工作与生活平衡。
    结论:缺乏支持,在巨大的脆弱性时期,信息和透明度使癌症患者的临终经历更加困难。我们的发现强调了对这一人群的需求进行更深入了解的重要性,以便在知情的情况下努力改善姑息医疗保健,并在生命结束时实施更全面的护理和支持。
    BACKGROUND: Cancer is a disease that transcends what is purely medical, profoundly affecting the day-to-day life of both patients and family members. Previous research has shown that the consequences of cancer are greatly aggravated in patients at the end of life, at a time when they must also grapple with numerous unmet needs. The main objective of this study was to obtain more in-depth insight into these needs, primarily in patients with end-stage cancer nearing death.
    METHODS: Semi-structured interviews were conducted in Spain with cancer patients at the end of life (n = 3) and their family members (n = 12). The findings from the interviews were analyzed using qualitative thematic analysis and a grounded theory approach.
    RESULTS: Four major themes emerged from the interviews that explored the needs and concerns of patients with cancer at the end of life: (1) physical well-being (2) emotional well-being (3) social well-being and (4), needs relating to information and autonomous decision-making. The interviews also shed light on the specific needs of family members during this period, namely the difficulties of managing increased caregiver burden and maintaining a healthy work-life balance.
    CONCLUSIONS: A lack of support, information and transparency during a period of immense vulnerability makes the end-of-life experience even more difficult for patients with cancer. Our findings highlight the importance of developing a more in-depth understanding of the needs of this population, so that informed efforts can be made to improve palliative healthcare and implement more comprehensive care and support at the end of life.
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  • 文章类型: Journal Article
    背景:成骨不全症(OI)是一种罕见的疾病,以低骨量和骨脆性为特征,与骨折风险增加相关,以及导致OI患者健康相关生活质量受损的骨骼和骨骼外症状。由于西班牙已发表的关于OI的研究有限,这项研究旨在确定流行病学,评估疾病负担,西班牙OI患者的管理和未满足的需求。34位成骨不全症患者管理专家完成了两轮在线咨询,并报告了西班牙医院的真实经验和数据。德尔菲研究问卷以文献综述为基础。由国家认可的临床专家组成的工作组支持研究问卷的开发和结果的最终验证。
    结果:西班牙被诊断为OI的患者的估计患病率为0.56:10,000居民(95CI:0.54-0.59),这代表了,大约,2,669名OI患者目前在西班牙医院接受治疗。据估计,西班牙每年约有269名新患者被诊断为OI,代表每年每10,000名居民的估计发病率为0.06(95CI:0.05-0.06)。在西班牙,OI的临床管理由一系列医学专家进行;然而,多学科护理没有完全实施。缺乏批准的治愈性治疗或减少疾病临床特征的治疗仍然是主要未满足的需求。
    结论:这项研究提供了临床专家报告的西班牙OI患者的现状的快照。结果提供了对该疾病流行病学的估计,补充现有的疾病负担证据,临床管理,以及西班牙这些患者未满足的需求。
    BACKGROUND: Osteogenesis imperfecta (OI) is a rare disease characterized by low bone mass and bone fragility, associated with an increased risk of fractures, and skeletal and extra-skeletal symptoms that results in an impairment of health-related quality of life of OI patients. Since published studies on OI in Spain are limited, this study aimed to determine the epidemiology, assessed the disease burden, management and unmet needs of OI patients in Spain. Thirty-four experts in the management of patients with osteogenesis imperfecta completed two rounds of online consultation and reported real-life experience and data from Spanish hospitals. Delphi study questionnaires were based on literature review. A working group of nationally recognized clinical experts supported the development of the study questionnaires and the final validation of results.
    RESULTS: The estimated prevalence of patients diagnosed with OI in Spain is 0.56:10,000 inhabitants (95%CI: 0.54-0.59), which represents that, approximately, 2,669 OI patients are currently managed in Spanish hospitals. It is estimated that approximately 269 new patients would be diagnosed with OI each year in Spain, representing an estimated incidence of 0.06 (95%CI: 0.05-0.06) per 10,000 inhabitants per year. Clinical management of OI in Spain is performed by a range of medical specialists; however, multidisciplinary care is not fully implemented. The absence of an approved curative treatment or a treatment to reduce the clinical features of the disease remains the main unmet need.
    CONCLUSIONS: This study provides a snapshot of the current situation of patients with OI in Spain reported by clinical experts. The results provide an estimation of the epidemiology of the disease, and complement the available evidence on disease burden, clinical management, and unmet needs of these patients in Spain.
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  • 文章类型: Journal Article
    有多种可能的避孕药具。虽然医疗建议是选择个人避孕药具的重要资源,先前的研究表明,互联网已成为越来越重要的医疗保健信息来源。
    本研究旨在确定德国避孕相关网络搜索的主要趋势,从而得出有关预防怀孕的偏好和未满足需求的结论。
    纵向回顾性研究。
    在2018年至2021年间,GoogleAdsKeywordPlanner用于识别与避孕相关的关键字及其在德国和所有联邦州的搜索量。关键字是根据性别分类的,荷尔蒙/非荷尔蒙,不同的避孕方法。分析了搜索量和类别的时间趋势,地区差异,和潜在的社会经济变量。
    1481个与避孕相关的关键字对应于15,081,760个搜索。总的来说,搜索量增加了56%/10万居民。在“女性”类别中观察到最高的平均搜索量,\"\"女人/非荷尔蒙\"和\"女人/非荷尔蒙/障碍,\"分别,在联邦州汉堡,而最低的是北莱茵-威斯特法伦州。
    搜索量的增加反映了人们对避孕的高度兴趣,特别是在非荷尔蒙的女性方法。这与可用的有效非激素避孕药的数量有限相反,并指出了未满足的需求。此外,男性避孕药的搜索量较低,这表明德国社会在计划生育方面负有针对性别的责任。
    分析Google搜索量,以确定德国社会避孕方面的偏好和未满足的需求。有各种各样的避孕药具。可以在妇科医生咨询或通过其他来源的帮助下做出特定避孕药具的决定,比如互联网。研究表明,互联网已成为获取健康信息的重要来源。这项研究旨在确定德国避孕相关网络搜索的主要趋势,从而得出有关预防怀孕的偏好和未满足需求的结论。2018年至2021年期间,GoogleAdsKeywordPlanner在德国和所有联邦州用于识别与避孕相关的关键字及其搜索量。根据女性或男性是否使用避孕药具,将关键字分配到不同的类别,避孕方法是否含有激素或不含激素,以及哪些确切的避孕方法与搜索词相关。搜索量是根据一段时间的趋势进行分析的,德国的地区差异和社会经济变量。每10万居民的搜索量增加了56%。平均搜索量最高的是女性类别,其次是女性非荷尔蒙避孕药,在这一类中,避孕方法“屏障”。研究表明,人们对避孕有很高的兴趣,尤其是在非荷尔蒙的女性避孕药中。这些结果与有限数量的非激素和有效的避孕方法形成对比。此外,男性类别中的低搜索量表明,在德国社会中,女性是避孕方面的主要责任方。
    There are a variety of possible contraceptives available. While medical advice is an important resource for selecting the individual contraceptive, previous research has shown that the Internet has become an increasingly important source of health care information.
    This study aims to identify key trends in contraception-related web searches in Germany and thus allows conclusions about preferences and unmet needs with regard to pregnancy prevention.
    Longitudinal retrospective study.
    Google Ads Keyword Planner was used to identify contraception-related keywords and their search volume in Germany and all federal states between 2018 and 2021. The keywords were categorized based on gender, hormonal/non-hormonal, and different contraceptive methods. Search volume and categories were analyzed for temporal trends, regional differences, and underlying socioeconomic variables.
    The 1481 contraception-related keywords corresponded to 15,081,760 searches. In total, a 56% increase in searches/100,000 inhabitants was observed. Highest mean search volume was observed in categories \"woman,\" \"woman/non-hormonal\" and \"woman/non-hormonal/barrier,\" respectively, and in the federal state Hamburg, while the lowest was seen in North Rhine-Westphalia.
    The increase in search volume reflects a high interest in contraception, particularly in non-hormonal female methods. This stands in contrast to the limited number of effective non-hormonal contraceptives available and points to an unmet need. In addition, the low search volume for male contraceptives demonstrates gender-specific responsibilities regarding family planning in German society.
    Analyzing Google search volume to identify preferences and unmet needs in contraception in German societyContraception is a topic that occupies many people in their daily lives. There is a wide range of different contraceptives available. The decision for a particular contraceptive can be made with the help of a consultation with a gynecologist or through other sources, such as the Internet. Research has shown that the Internet has become an important source for obtaining health information. This study aims to identify key trends in contraception-related web searches in Germany and thus allows conclusions about preferences and unmet needs with regard to pregnancy prevention. Google Ads Keyword Planner was used to identify contraception-related keywords and their search volume in Germany and all federal states between 2018 and 2021. The keywords were assigned to different categories based on whether the woman or the man uses the contraceptive, whether the contraceptive methods contain hormones or no hormones, and which exact contraceptive methods are associated with the search term. The search volume was analyzed in terms of trends over time, regional differences in Germany and socioeconomic variables. A 56% increase in searches per 100,000 inhabitants was observed. The highest mean search volume was observed in the category woman, followed by female non-hormonal contraceptives and within that category, the contraceptive method “barrier.” The study shows that there is a high interest in contraception, especially in non-hormonal female contraceptives. These results contrast with the limited number of non-hormonal and effective contraceptive methods available. In addition, the low search volume in the category man shows that women are the main responsible party in terms of contraception in German society.
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  • 文章类型: Journal Article
    目标:为了支持结直肠癌夫妇应对癌症,我们开发了一个基于夫妇的未满足的支持性护理需求干预计划,以支持性护理需求框架为指导,并检查了可行性,可接受性,以及未满足的支持性护理需求计划的初始效果。
    方法:在中国结直肠癌夫妇中进行了干预前后研究的设计。干预措施通过面对面和电话干预相结合的方式分五次进行。通过招聘和保留率衡量计划的可行性,并通过定量和定性干预后计划评估来测试计划的可接受性。完整的数据(N=20对)用于计算效果大小以评估初始干预效果。
    结果:在招募率(66.7%)和保留率(83.3%)方面,有证据表明干预计划是可行的。参与者对该计划的满意度也证明了其可接受性。干预措施(Cohen=0.15-0.56)在改善未满足的支持性护理需求和结直肠癌夫妇的大多数癌症适应结果方面具有小-中等效应大小。验证程序的初始效果。
    结论:未满足的支持性护理需求计划是可行的,可接受,并初步有效地支持中国结直肠癌夫妇改善未满足的支持性护理需求和癌症适应性,正如这项研究所提供的。
    OBJECTIVE: To support colorectal cancer couples cope with cancer, we developed a couple-based unmet supportive care needs intervention program guided by the Supportive Care Needs Framework and examined the feasibility, acceptability, and initial effects of the unmet supportive care needs program.
    METHODS: The design of a pre-and post-intervention study was conducted among Chinese colorectal cancer couples. The intervention was delivered in five sessions through in-person and telephone interventions combined. To measure program feasibility through recruitment and retention rates, and to test program acceptability through quantitative and qualitative post-intervention program assessments. The complete data (N = 20 pairs) were used to calculate effect sizes to assess the initial intervention effect.
    RESULTS: There was evidence of the feasibility of the intervention program in terms of recruitment (66.7%) and retention (83.3%) rates. Participants\' satisfaction with the program also attested to its acceptability. The intervention (Cohen\'s = 0.15-0.56) had a small-moderate effect size in improving unmet supportive care needs and most cancer-adapted outcomes for colorectal cancer couples, validating the initial effect of the program.
    CONCLUSIONS: The unmet supportive care needs program is feasible, acceptable, and preliminarily effective in supporting Chinese colorectal cancer couples to improve unmet supportive care needs and cancer adaptability, as provided by this study.
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  • 文章类型: Journal Article
    背景/目的:Baricitinib(BAR)是第一个在欧洲批准用于类风湿关节炎(RA)的口服选择性Janus激酶抑制剂。仍然需要现实世界的数据来阐明其长期利益/风险状况。本研究旨在评估有效性,持久性,坚持,以及在现实世界中BAR的安全性。方法:2017年10月至2021年12月对开始BAR的RA患者进行了一项综合研究。对有效性进行了评估,使用28关节计数-C反应蛋白(DAS28CRP)评估疾病活动评分的基线变化,和实现低疾病活动/缓解。使用Kaplan-Meier分析评估药物持久性。使用药物占有比(MPR)和风湿病学5项依从性问卷评估依从性。安全性评估确定全球发生率比例和不良事件调整后的发生率。结果:总的来说,最终分析了61/64名招募的患者,83.6%为女性,78.7%为血清阳性,平均年龄为58.1(15.4)岁,病程为13.9(8.3)年。共有32.8%的患者未接受生物制剂治疗,16.4%的患者接受BAR作为单一疗法。BAR暴露的中位数为12.4(6.6-31.2)个月(范围3.1-51.4)。治疗后观察到DAS28CRP的显着变化(差异-1.2,p=0.000)。70.5%和60.7%的患者实现了低疾病活动性或缓解,分别,在整个随访期间,50.8%(31/61)仍在BAR上,中位持续时间为31.2(9.3-53.1)个月。平均MPR为0.96(0.08),根据问卷,所有患者均表现出“良好的依从性”。总的来说,21.3%的患者因毒性而停用baricitinib。结论:在我们现实世界的实践中,BAR证明了有效性,大的持久性,高度坚持治疗,和可接受的安全性。
    Background/Aim: Baricitinib (BAR) is the first oral selective Janus kinase inhibitor approved in Europe for rheumatoid arthritis (RA). Real-world data are still needed to clarify its long-term benefits/risk profile. This study aimed to evaluate the effectiveness, persistence, adherence, and safety of BAR in a real-world setting. Methods: An ambispective study was conducted between October 2017 and December 2021 in RA patients starting BAR. The effectiveness was evaluated, assessing changes from the baseline of the Disease Activity Score using 28-joint counts-C reactive protein (DAS28CRP), and the achievement of low disease activity/remission. Drug persistence was evaluated using Kaplan-Meier analysis. Adherence was estimated using the medication possession ratio (MPR) and the 5-item Compliance Questionnaire for Rheumatology. Safety was assessed determining global incidence proportion and adverse event adjusted incidence rates. Results: In total, 61/64 recruited patients were finally analyzed, 83.6% were female, 78.7% were seropositive, the mean age was 58.1 (15.4) years, and the disease duration was 13.9 (8.3) years. A total of 32.8% of patients were naïve to biologics and 16.4% received BAR as monotherapy. The median exposure to BAR was 12.4 (6.6-31.2) months (range 3.1-51.4). A significant change in DAS28CRP was observed after treatment (difference -1.2, p = 0.000). 70.5% and 60.7% of patients achieved low disease activity or remission, respectively, and 50.8% (31/61) remained on BAR throughout the follow-up, with a median persistence of 31.2 (9.3-53.1) months. The average MPR was 0.96 (0.08) and all patients exhibited \"good adherence\" according to the questionnaire. In total, 21.3% of patients discontinued baricitinib due to toxicity. Conclusions: In our real-world practice, BAR demonstrated effectiveness, large persistence, high adherence to treatment, and an acceptable safety profile.
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  • 文章类型: Journal Article
    背景:患有严重疾病的患者的护理伙伴在患者的治疗期间和死亡后经历重大挑战和未满足的需求。向他人学习,分享经验可能是有价值的,但是机会并不总是可用的。
    目的:本研究旨在设计和原型,促进,和基于网络的同伴支持网络,以帮助患有严重疾病的人的活跃和失去亲人的护理伙伴更好地准备应对严重疾病和丧亲期间出现的意外。
    方法:由18人组成的共同设计团队包括积极的护理伙伴和丧亲者,经历过严重疾病的人,区域卫生保健和支持伙伴,和临床医生。它由主持人和同行网络主题专家指导。我们进行了设计练习,以确定对等支持网络的功能和规范。共同设计成员独立确定网络规范的优先级,它们被纳入基于Web的网络的早期迭代中。
    结果:团队优先考虑了两个功能:(1)将护理伙伴与信息联系起来;(2)促进情感支持。设计过程生成了24个潜在的网络规范来支持这些功能。最高优先事项包括提供支持和尊重的社区;将人们与可信赖的资源联系起来;减少寻求帮助的障碍;并提供常见问题和回应。网络平台必须简单直观,为用户提供技术支持,保护会员隐私,提供公开信息和私人讨论论坛,并且易于访问。在3个月的时间内,在基于ConnectShareCare的网络中注册会员是可行的。
    结论:共同设计过程支持为农村地区严重疾病患者的护理伙伴确定同伴支持网络的关键特征,以及初始测试和使用。正在进行进一步的测试,以评估网络的长期可行性和影响。
    BACKGROUND: Care partners of people with serious illness experience significant challenges and unmet needs during the patient\'s treatment period and after their death. Learning from others with shared experiences can be valuable, but opportunities are not consistently available.
    OBJECTIVE: This study aims to design and prototype a regional, facilitated, and web-based peer support network to help active and bereaved care partners of persons with serious illness be better prepared to cope with the surprises that arise during serious illness and in bereavement.
    METHODS: An 18-member co-design team included active care partners and those in bereavement, people who had experienced serious illness, regional health care and support partners, and clinicians. It was guided by facilitators and peer network subject-matter experts. We conducted design exercises to identify the functions and specifications of a peer support network. Co-design members independently prioritized network specifications, which were incorporated into an early iteration of the web-based network.
    RESULTS: The team prioritized two functions: (1) connecting care partners to information and (2) facilitating emotional support. The design process generated 24 potential network specifications to support these functions. The highest priorities included providing a supportive and respectful community; connecting people to trusted resources; reducing barriers to asking for help; and providing frequently asked questions and responses. The network platform had to be simple and intuitive, provide technical support for users, protect member privacy, provide publicly available information and a private discussion forum, and be easily accessible. It was feasible to enroll members in the ConnectShareCare web-based network over a 3-month period.
    CONCLUSIONS: A co-design process supported the identification of critical features of a peer support network for care partners of people with serious illnesses in a rural setting, as well as initial testing and use. Further testing is underway to assess the long-term viability and impact of the network.
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  • 文章类型: Journal Article
    提高妇科癌症的生存率正在为长期痛苦管理带来越来越大的临床挑战。心理学家主导的癌症幸存者干预措施可能是有益的,但往往是昂贵的。英国心理健康从业者(PWP)劳动力的崛起可能会提供更便宜的服务,但同样有效,更可持续和更容易获得的干预交付方法。我们的目的是测试PWP共同促进干预对减少抑郁和焦虑的有效性,生活质量和未满足的需求。
    我们计划使用务实的,非随机对照设计,从第二个临床站点招募比较样本。干预措施是在六周的会议上进行的;数据是在基线时从参与者那里收集的,干预期间每周一次,以及为期一周和三个月的随访。后勤挑战意味着我们只招募了8名参与者进入干预组,和26名参与者进入对照组。
    我们没有发现显著,抑郁症的组间差异,生活质量或未满足的需求,尽管在随访中发现焦虑存在一些差异(p<.001)。对潜在干预中介过程的分析表明,自我管理自我效能感的潜在重要性。对心理干预的低吸收引发了以下问题:(a)患者驱动的对基于团体的支持的需求,和(b)这一干预方案的可持续性。
    这项研究未能招募目标;动力不足的分析可能解释了报告的缺乏重大影响,尽管数据中的一些趋势令人感兴趣。保留在干预组中,对照组的低减员表明干预内容和试验设计是可接受的;然而,基线人群较少,使得该试验在目前的设计中不可行.需要进一步的工作来回答我们的研究问题,而且,重要的是,以解决这组癌症幸存者中心理干预措施的低摄取问题。
    ClinicalTrials.gov,NCT03553784(2018年6月14日注册)。
    越来越多的人在妇科癌症治疗后存活的时间更长,这意味着我们需要改变我们关心和支持不断增长的癌症幸存者群体的方式。心理困扰和生活质量差在受癌症影响的人群中很常见,一旦治疗结束,这些并不总是改善。提供心理支持可能很昂贵,这意味着不是每个想要它的人都可以访问它。在英国医疗保健中引入了心理健康从业者(PWP)。这种劳动力可能为更多的癌症幸存者提供心理支持提供替代方案。我们的目的是测试PWP共同实施的干预措施在改善抑郁症方面有多好,曾接受妇科癌症治疗的患者的焦虑和生活质量。干预措施在每周六次的会议上被提供给小组患者。我们将接受干预的患者与无法从不同医院获得相同心理支持的相似患者组进行了比较。参与者在招募时报告了他们的心理健康和生活质量,每周六周,然后在一周和三个月后的随访时间点。由于对团体干预的兴趣低,我们没有招募目标。只有8名参与者参与了干预,我们只招募了26名对照组参与者.这意味着我们不能完全相信我们的结果。尽管如此,研究结果表明,这种干预措施有助于改善参与者的焦虑水平。进一步的审判,招募了更多的癌症幸存者,需要回答我们的研究问题。然而,本试验表明可接受性和潜在获益.我们还需要进行研究,以了解为什么很少有癌症幸存者愿意参加这种基于群体的干预。
    UNASSIGNED: Improving survival from gynaecological cancers is creating an increasing clinical challenge for long-term distress management. Psychologist-led interventions for cancer survivors can be beneficial, but are often costly. The rise of the Psychological Wellbeing Practitioner (PWP) workforce in the UK might offer a cheaper, but equally effective, intervention delivery method that is more sustainable and accessible. We aimed to test the effectiveness of a PWP co-facilitated intervention for reducing depression and anxiety, quality of life and unmet needs.
    UNASSIGNED: We planned this trial using a pragmatic, non-randomised controlled design, recruiting a comparator sample from a second clinical site. The intervention was delivered over six-weekly sessions; data were collected from participants at baseline, weekly during the intervention, and at one-week and three-month follow-up. Logistical challenges meant that we only recruited 8 participants to the intervention group, and 26 participants to the control group.
    UNASSIGNED: We did not find significant, between-group differences for depression, quality of life or unmet needs, though some differences at follow-up were found for anxiety ( p<.001). Analysis of potential intervention mediator processes indicated the potential importance of self-management self-efficacy. Low uptake into the psychological intervention raises questions about (a) patient-driven needs for group-based support, and (b) the sustainability of this intervention programme.
    UNASSIGNED: This study failed to recruit to target; the under-powered analysis likely explains the lack of significant effects reported, though some trends in the data are of interest. Retention in the intervention group, and low attrition in the control group indicate acceptability of the intervention content and trial design; however a small baseline population rendered this trial infeasible in its current design. Further work is required to answer our research questions, but also, importantly, to address low uptake for psychological interventions in this group of cancer survivors.
    UNASSIGNED: ClinicalTrials.gov, NCT03553784 (registered 14 June 2018).
    An increasing number of people are surviving for longer time periods following treatment for gynaecological cancer and this means we need to change how we care for and support a growing cancer survivor population. Psychological distress and poor quality of life are common in people affected by cancer, and these do not always improve once treatment ends. Providing psychological support can be expensive, which means that not everyone who wants it can access it. Psychological Wellbeing Practitioners (PWPs) have been introduced in UK health care. This workforce might offer an alternative for providing psychological support to a greater number of cancer survivors. We aimed to test how good a PWP co-delivered intervention is at improving depression, anxiety and quality of life in people who had been treated for gynaecological cancer. The intervention was delivered to small groups of patients over six weekly sessions. We compared those who received the intervention with a similar patient group who did not have access to the same psychological support from a different hospital. Participants reported their psychological wellbeing and quality of life at the point of recruitment, weekly for six weeks, and then at follow-up time-points one week and three months later. Because of low interest in the group intervention we did not recruit to target. Only 8 participants took part in the intervention, and we recruited only 26 participants in the control group. This means we can’t have full confidence in our results. Nonetheless, the findings indicate that this intervention was helpful for improving participants’ anxiety levels. Further trials, which recruit a larger number of cancer survivors, are needed to answer our research questions. However, this trial indicates acceptability and potential benefit. We also need to undertake research to understand why so few cancer survivors wanted to take part in this group-based intervention.
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  • 文章类型: Journal Article
    产妇未遂(MNM)病例定义为“几乎死亡但因危及生命的怀孕或分娩并发症而幸存下来的妇女”。这项研究是针对医疗保健提供者和近亲母亲(NMM)进行的,目的是发现伊朗NMM未满足的需求。
    在这项定性研究中,主要线人的37名参与者,健康提供者,NMM及其丈夫是使用有目的的抽样选择的。进行半结构化深度访谈以收集数据,直到达到数据饱和。使用Graneheim和Lundman常规内容分析对数据进行分析。
    分析揭示了“需要全面支持”的核心类别。八类包括“心理”,“生育能力”,\"information\",“提高护理质量”,“社会文化”,\"财务\",从18个子类别中出现的“母乳喂养”和“营养”需求,由2112个代码组成。
    NMM的许多实际需求已被忽略。孕产妇卫生政策制定者应根据本研究中发现的需求提供标准指南,以支持NMM未满足的需求。
    UNASSIGNED: A maternal near-miss (MNM) case is defined as \"a woman who nearly died but survived from life-threatening pregnancy or childbirth complication\". This study was conducted on health care providers and near-miss mothers (NMMs) with the aim of discovering the unmet needs of Iranian NMM.
    UNASSIGNED: In this qualitative study 37 participants of key informants, health providers, NMMs and their husbands were selected using purposive sampling. Semi-structured in-depth interviews were conducted for data collection until data saturation was achieved. Data were analyzed using Graneheim and Lundman conventional content analysis.
    UNASSIGNED: The analysis revealed the core category of \"the need for comprehensive support\". Eight categories included \"psychological\", \"fertility\", \"information\", \"improvement the quality of care\", \"sociocultural\", \"financial\", \"breastfeeding\" and \"nutritional\" needs emerging from 18 sub-categories, were formed from 2112 codes.
    UNASSIGNED: Many of the real needs of NMM have been ignored. Maternal health policymakers should provide standard guidelines based on the needs discovered in this study to support the NMMs\' unmet needs.
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