unmet need

未满足的需求
  • 文章类型: Journal Article
    初级保健医师(PCP)在管理代谢功能障碍相关的脂肪变性肝病(MASLD)中的重要性增加。这项研究旨在评估医生中MASLD在线教育计划的有效性。
    总共,869名医生(72名转诊中心的医生和797名PCP)参与了这项研究。他们完成了一项关于他们对MASLD患者的临床实践的初步调查,在收到一系列关于MASLD的每周七套教育材料8周后,进行了第二次在线调查。
    在基线调查中,大多数PCP未常规评估MASLD中肝纤维化的分期;它们通常基于升高的肝酶水平开始评估.只有有限数量的PCP使用振动控制的瞬态弹性成像。管理MASLD的主要障碍是PCP的“患者教育费用不足”和转诊中心医师的“咨询时间短”。在后续调查中,使用非侵入性试验进行肝纤维化评估的百分比从7.0增加到11.2%.此外,对心血管疾病的评估从3.9%增加到8.2%,缺血性卒中的风险从13.7%增加到16.9%。MASLD诊断后,患者立即转诊给专家的百分比从15.4%降至12.3%。
    PCP与转诊中心医师之间有关MASLD的管理策略和观点的差异可能会阻碍减轻疾病负担的努力。通过为期7周的教育计划,提高PCP对MASLD的认识导致不必要的转诊率降低和心血管评估增加。
    UNASSIGNED: The importance of primary care physicians (PCPs) in managing metabolic dysfunction-associated steatotic liver disease (MASLD) has increased. This study aimed to assess the effectiveness of an online educational program on MASLD among physicians.
    UNASSIGNED: In total, 869 physicians (72 physicians at referral centers and 797 PCPs) participated in this study. They completed an initial survey regarding their clinical practices for patients with MASLD, followed by a second online survey 8 weeks after receiving a series of seven weekly sets of educational materials on MASLD.
    UNASSIGNED: In the baseline survey, most PCPs did not routinely evaluate the stage of hepatic fibrosis in MASLD; they typically initiated assessments based on elevated liver enzyme levels. Only a limited number of PCPs used vibration-controlled transient elastography. The main hurdles in managing MASLD were \"the absence of a fee for patient education\" for PCPs and \"short consultation time\" for referral-center physicians. In the follow-up survey, the percentage of liver fibrosis assessments using noninvasive tests increased from 7.0 to 11.2%. Additionally, evaluations for cardiovascular disease increased from 3.9 to 8.2%, and the risk of ischemic stroke increased from 13.7 to 16.9%. The percentage of immediate referrals of patients to specialists after an MASLD diagnosis decreased from 15.4 to 12.3%.
    UNASSIGNED: The discrepancies in management strategies and viewpoints regarding MASLD between PCPs and referral-center physicians can hinder efforts to mitigate the disease burden. Increasing awareness among PCPs regarding MASLD through a 7-week education program led to a reduction in unnecessary referral rates and an increase in cardiovascular evaluations.
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  • 文章类型: Journal Article
    了解慢性阻塞性肺疾病(COPD)护理级联对于确定何时何地进行干预以改善COPD预后至关重要。我们旨在确定在中国卫生系统中寻求COPD护理的患者在COPD护理级联的每个阶段中失联的比例,以及失联模式在不同地理区域和人群中的差异。
    从2018年11月3日到2021年4月22日,我们使用了来自全国中国“快乐呼吸”计划的个人水平患者数据,旨在识别COPD患者并提供适当的护理。COPD定义为支气管扩张剂后1s用力呼气量与用力肺活量之比(FEV1/FVC)<0.70。我们计算了个人的比例,在参加“快乐呼吸”计划时,(I)曾接受肺功能检查,(ii)过去曾被诊断患有慢性阻塞性肺病,(iii)目前正在接受COPD治疗,和(iv)已实现COPD的控制。我们使用多级回归检查了达到护理级联的每个阶段与个体患者特征以及区域一级的经济发展和卫生系统中可用资源之间的关联。
    在“快乐呼吸”计划中的29,201名COPD患者中,41.0%(95%置信区间[CI]:40.4-41.6%)曾进行过COPD测试,17.6%(95%CI:17.1-18.0%)曾被诊断为COPD,8.5%(95%CI:8.2-8.8%)目前正在接受COPD治疗,4.6%(95%CI:4.3-4.8%)的患者在前一年有轻度或无加重,3.9%(95%CI:3.7-4.2%)的患者在前一年没有出现恶化.平均而言,住在北京城市的病人,武汉,与居住在大庆和洛阳的患者相比,银川市在COPD护理级联方面取得了进一步的进步。使用多层次回归,我们发现年轻的时候,农村住宅,低地区人均GDP与COPD护理级联各阶段损失较大显著相关.
    在中国卫生系统中,在COPD护理级联的每个阶段,大部分COPD患者都失去了。最大的损失发生在级联的初始阶段,当诊断首次出现时。需要新的政策和干预措施来加强COPD护理,尤其是筛查和诊断,在中国卫生系统中减少这种巨大的疾病负担。
    这项工作得到了国家自然科学基金重大项目(82090011)的支持,CAMS医学科学创新基金(CIFMS)(2021-I2M-1-049),和地平线欧洲(HORIZON-MSCA-2021-SE-01;项目编号101086139-PoPMeD-SuSDeV)。结核病得到了亚历山大·冯·洪堡基金会通过亚历山大·冯·洪堡教授奖的支持。
    UNASSIGNED: Understanding the chronic obstructive pulmonary disease (COPD) care cascade is crucial for identifying where and when to intervene to improve COPD outcomes. We aimed to determine the proportion of patients with COPD seeking care in China\'s health system who are lost at each stage of the COPD care cascade and how the patterns of loss vary across geographical regions and population groups.
    UNASSIGNED: From November 3, 2018, to April 22, 2021, we used individual-level patient data from the national Chinese \'Happy Breathing\' Programme, which aims to identify patients with COPD and provide appropriate care. COPD was defined as a post-bronchodilator ratio of forced expiratory volume in 1 s to forced vital capacity (FEV1/FVC) <0.70. We calculated the proportions of individuals who, at enrolment into the \'Happy Breathing\' Programme, (i) had ever undergone a pulmonary function test, (ii) had been diagnosed with COPD in the past, (iii) were currently on treatment for COPD, and (iv) had achieved control of their COPD. We examined the association between reaching each stage of the care cascade and individual patient characteristics as well as regional-level economic development and available resources in the health system using multilevel regression.
    UNASSIGNED: Among the 29,201 patients with COPD in the \'Happy Breathing\' Programme, 41.0% (95% confidence interval [CI]: 40.4-41.6%) had ever been tested for COPD, 17.6% (95% CI: 17.1-18.0%) had previously been diagnosed with COPD, 8.5% (95% CI: 8.2-8.8%) were currently on treatment for COPD, 4.6% (95% CI: 4.3-4.8%) of patients had mild or no exacerbations in the prior year, and 3.9% (95% CI: 3.7-4.2%) of patients had suffered no exacerbations in the prior year. On average, patients living in the cities of Beijing, Wuhan, and Yinchuan had progressed further along the COPD care cascade than patients living in Daqing and Luoyang. Using multilevel regression, we found that young age, rural residence, and low regional per-capita GDP were significantly associated with larger losses at each stage of the COPD care cascade.
    UNASSIGNED: Substantial proportions of patients with COPD are lost at each stage of the COPD care cascade in the Chinese health system. The largest losses occur during the initial stages of the cascade, when diagnosis first occurs. New policies and interventions are required to boost COPD care, especially screening and diagnosis, in the Chinese health system to reduce this large disease burden.
    UNASSIGNED: This work was supported by Major Programme of National Natural Science Foundation of China (82090011), CAMS Innovation Fund for Medical Sciences (CIFMS) (2021-I2M-1-049), and Horizon Europe (HORIZON-MSCA-2021-SE-01; project number 101086139-PoPMeD-SuSDeV). TB was supported by the Alexander von Humboldt Foundation through the Alexander von Humboldt professorship award.
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  • 文章类型: Case Reports
    机会性真菌malasseziafurfur(M.furfur)可引起皮肤或全身感染。我们报告了一例22岁的男性T细胞急性淋巴细胞白血病(T-ALL)并发蜡样芽孢杆菌(B.蜡质)败血症。通过显微镜检查和基于培养的方法诊断真菌感染。而自动化血液培养系统和分子方法未能识别真菌。尽管有适当的治疗,患者在住院18天后死亡.
    The opportunistic fungus Malassezia furfur (M. furfur) can cause either cutaneous or systemic infections. We report a case of M. furfur fungemia in a 22-year-old male with T-cell Acute Lymphoblastic Leukemia (T-ALL) who developed concomitant Bacillus cereus (B. cereus) septicemia. The fungal infection was diagnosed by microscopic examination and culture-based methods, while automated blood culture systems and molecular approaches failed in identifying the fungus. Despite appropriate therapy, the patient died 18 days after the hospitalization.
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  • 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
    报告的文献揭示了访问和误解的问题,部落中避孕药具使用率低,计划生育需求未得到满足。
    我们的目的是了解避孕药具的使用率,部落已婚育龄妇女中未满足的需求及其决定因素。
    基于社区的,观察,对西孟加拉邦纳迪亚区的290名部落妇女进行了横断面设计分析研究。
    获得道德许可后,面试官管理的预先设计,结构化形式用于收集有关社会人口统计属性的信息,婚姻史,避孕药和生育状况,未满足的需求以及不使用避孕药具的原因。
    使用双变量分析来了解差异,并且P值为0.05或更小的双尾显著性检验被认为具有统计学意义。
    本研究显示,少女婚姻(60.7%)和怀孕(27.6%)的患病率很高。每六个部落妇女中就有一个是文盲。避孕普及率为43.8%。输卵管切除术(38.6%)是最常见的方法(38.6%),而未感觉到的需要(19.6%)是不使用的最常见原因。年龄,女性职业,社会阶层,生活状态,婚姻期限,发现在世儿童的数量和生育未来儿童的愿望与当前的避孕药具使用有关。社会阶层,活着的孩子的数量,避孕意识,来源和可用性的地方,流产史,来自家庭和丈夫的反对,和丈夫的参与都与未满足的计划生育需求显着相关。
    以达到令人满意的对计划生育方法的认识和接受为重点的深入咨询,可能有助于通过减少未满足的需求来实现生殖健康。
    UNASSIGNED: Reported literatures revealed the problems of access and misconceptions, low contraceptive usage and high unmet need for family planning among the tribes.
    UNASSIGNED: Our aim was to find out the prevalence of contraceptive usage, unmet need and their determinants among tribal married reproductive women.
    UNASSIGNED: A community-based, observational, analytical research using cross-sectional design was conducted among 290 tribal women of the Nadia district of West Bengal.
    UNASSIGNED: After obtaining ethical clearance, an interviewer-administered pre-designed, structured proforma was used to collect information on socio-demographic attributes, marital history, contraceptives and fertility status, unmet needs and the reasons for not using contraceptives.
    UNASSIGNED: Bi-variate analysis was used to know the differences and a two-tailed significance test with a P value of 0.05 or less was considered statistically significant.
    UNASSIGNED: The present study revealed a high prevalence of teenage marriage (60.7%) and pregnancy (27.6%). Every one in six tribal women was illiterate. The contraceptive prevalence rate was 43.8%. Tubectomy (38.6%) was the most common method (38.6%) and unfelt need (19.6%) was the most common reason for non-use. Age, occupation of women, social class, living status, marital duration, number of living children and desire to have a future child were found to be associated with the current contraceptive use. Social class, number of living children, contraceptive awareness, source and place of availability, abortion history, opposition from family and husband, and husband participation all were significantly associated with the unmet need for family planning.
    UNASSIGNED: In-depth counselling focusing on achieving a satisfactory level of awareness and acceptance of family planning methods may help to achieve reproductive health by reducing unmet needs.
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  • 文章类型: Journal Article
    哮喘,受遗传影响,环境,由于护理不足和获得有效治疗的机会有限,社会因素导致不良结果和可预防的死亡率。这项研究旨在分析土耳其自我报告的哮喘患病率,专注于其决定因素,例如个人因素,生活方式,社会经济地位,和医疗保健。本研究对2019年土耳其健康调查(THS)进行了二次分析,由土耳其统计研究所采用具有全国代表性的横截面设计。抽样利用了分层的,两阶段整群抽样方法,分析了16,976名成人(15岁及以上)的哮喘决定因素。自变量分为四个领域:个体因素,生活方式评估,社会经济因素,和获得医疗保健服务。哮喘的患病率为9.8%,不同的人口统计学差异很大。老年人哮喘发病率较高,离婚/丧偶个人,那些有沟通困难的人,和肥胖的人。与成本相关的未满足的医疗保健需求和预约时间安排延迟会增加哮喘风险。Logistic回归模型确定年龄,婚姻状况,肥胖,教育水平,和医疗服务是哮喘的重要预测因素。这项研究强调了土耳其哮喘的多方面决定因素,强调有针对性的干预措施针对个人的必要性,生活方式,社会经济,和医疗保健准入因素。
    Asthma, influenced by genetic, environmental, and social factors is leading to poor outcomes and preventable mortality due to inadequate care and limited access to effective treatments. This study aimed to analyze self-reported asthma prevalence in Turkey, focusing on its determinants, such as individual factors, lifestyle, socioeconomic status, and healthcare access.This study conducts a secondary analysis of the 2019 Turkiye Health Survey (THS), employing a nationally representative cross-sectional design by the Turkish Statistical Institute. The sampling utilized a stratified, two-stage cluster sampling method, with data from 16,976 adults (aged 15 years and older) analyzed for asthma determinants. The independent variables are categorized into four domains: individual factors, lifestyle assessment, socioeconomic factors, and access to the healthcare services.The prevalence of asthma is 9.8%, varying significantly across demographics. Higher asthma rates are observed among older, divorced/widowed individuals, those with communication difficulties, and obese individuals. Cost-related unmet healthcare needs and appointment scheduling delays increase asthma risk. Logistic regression models identified age, marital status, obesity, education level, and healthcare access as significant predictors of asthma.This study underscores the multifaceted determinants of asthma in Turkey, highlighting the necessity for targeted interventions addressing individual, lifestyle, socioeconomic, and healthcare access factors.
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  • 文章类型: Journal Article
    背景:局部晚期(不可切除)或转移性去分化脂肪肉瘤(DDLPS)是脂肪肉瘤的常见表现。尽管建立了DDLPS的诊断和治疗指南,关键的临床差距仍然由诊断挑战驱动,症状负担和缺乏针对性,安全有效的治疗方法。这项研究的目的是收集欧洲和美国对管理的专家意见,该疾病的临床试验设计以及无进展生存期(PFS)的价值未满足的需求和期望。其他目标包括提高认识和教育整个医疗保健系统的关键利益相关者。
    方法:招募了一个由12名肉瘤关键意见领袖(KOL)组成的国际小组。该研究包括两轮带有预定义陈述的调查。专家以9分的李克特量表对每个陈述进行评分。共识被定义为≥75%的专家对陈述评分≥7。在协商一致会议上讨论了订正声明。
    结果:关于疾病负担的55项预定义陈述中的43项达成了共识,治疗范式,未满足的需求,PFS的价值及其与总生存期(OS)的关系,和交叉试验设计。12个语句被取消优先级或与其他语句合并。没有专家不同意的陈述。
    结论:本研究构成了第一个关于DDLPS的国际Delphi小组。它旨在探索KOL对DDLPS中疾病负担和未满足需求的看法,PFS的值,以及它潜在的转化为操作系统的好处,以及DDLPS治疗交叉试验设计的相关性。结果表明,欧洲和美国在DDLPS管理方面保持一致,未满足的需求,和对临床试验的期望。提高对与DDLPS相关的关键临床差距的认识可以有助于改善患者预后并支持创新治疗方法的开发。
    BACKGROUND: Locally advanced (unresectable) or metastatic dedifferentiated liposarcoma (DDLPS) is a common presentation of liposarcoma. Despite established diagnostic and treatment guidelines for DDLPS, critical clinical gaps remain driven by diagnostic challenges, symptom burden and the lack of targeted, safe and effective treatments. The objective of this study was to gather expert opinions from Europe and the United States on the management, unmet needs and expectations for clinical trial design as well as the value of progression-free survival (PFS) in this disease. Other aims included raising awareness and educate key stakeholders across healthcare systems.
    METHODS: An international panel of 12 sarcoma key opinion leaders (KOLs) was recruited. The study consisted of two rounds of surveys with pre-defined statements. Experts scored each statement on a 9-point Likert scale. Consensus agreement was defined as ≥75% of experts scoring a statement with ≥7. Revised statements were discussed in a consensus meeting.
    RESULTS: Consensus was reached on 43 of 55 pre-defined statements across disease burden, treatment paradigm, unmet needs, value of PFS and its association with overall survival (OS), and cross-over trial design. Twelve statements were deprioritised or merged with other statements. There were no statements where experts disagreed.
    CONCLUSIONS: This study constitutes the first international Delphi panel on DDLPS. It aimed to explore KOL perception of the disease burden and unmet need in DDLPS, the value of PFS, and its potential translation to OS benefit, as well as the relevance of a cross-over trial design for DDLPS therapies. Results indicate an alignment across Europe and the United States regarding DDLPS management, unmet needs, and expectations for clinical trials. Raising awareness of critical clinical gaps in relation to DDLPS can contribute to improving patient outcomes and supporting the development of innovative treatments.
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  • 文章类型: Journal Article
    背景:我们旨在确定原发性脑肿瘤患者未满足的支持性护理需求水平,并就临床实践中满足患者需求的可行性达成专家共识。
    方法:我们对在辅助放化疗期间完成支持性护理需求调查SF34的高级别神经胶质瘤患者(n=116)进行了一项前瞻性队列研究的二次分析。参与者被分配到三个类别之一:不需要(“不需要”帮助所有项目),低需求(\'低需求\'对于至少一个项目的帮助,但没有\'中等\'或\'高\'需要),或中等/高需求(至少指示一个“中等”或“高”需求)。评估了对需要优先考虑的患者比例的临床反应能力。
    结果:总体而言,13%(n=5)被归类为不需要,23%(n=27)低需求,64%(n=74)中/高需求。在身体和日常生活领域至少报告了一种中度/高度需求(42%),和心理领域(34%)。认识到卫生系统的能力,对中等/高需求类别进行了修改,以区分:中等需求(至少一个项目表示“中等”需求,但任何项目均未选择“高”需求)和高需求(至少一个“高”需求)。结果显示24%(n=28)中等需求和40%(n=46)高需求。被归类为高需求的人表示需要协助导航卫生系统和信息。
    结论:使用四步分配导致40%的患者表示高需求。类别可能有助于适当的分类,并指导医疗保健交付的阶梯式模式。
    BACKGROUND: We aimed to define levels of unmet supportive care needs in people with primary brain tumor and to reach expert consensus on feasibility of addressing patients\' needs in clinical practice.
    METHODS: We conducted secondary analysis of a prospective cohort study of people diagnosed with high-grade glioma (n = 116) who completed the Supportive Care Needs Survey-Short Form during adjuvant chemoradiation therapy. Participants were allocated to 1 of 3 categories: no need (\"no need\" for help on all items), low need (\"low need\" for help on at least 1 item, but no \"moderate\" or \"high\" need), or moderate/high need (at least 1 \"moderate\" or \"high\" need indicated). Clinical capacity to respond to the proportion of patients needing to be prioritized was assessed.
    RESULTS: Overall, 13% (n = 5) were categorized as no need, 23% (n = 27) low need, and 64% (n = 74) moderate/high need. At least 1 moderate/high need was reported in the physical and daily living domain (42%) and the psychological (34%) domain. In recognition of health system capacity, the moderate/high need category was modified to distinguish between moderate need (\"moderate\" need indicated for at least 1 item but \"high\" need was not selected for any item) and high need (at least 1 \"high\" need indicated). Results revealed 24% (n = 28) moderate need and 40% (n = 46) high need. Those categorized as high need indicated needing assistance navigating the health system and information.
    CONCLUSIONS: Using four step allocations resulted in 40% of patients indicating high need. Categories may facilitate appropriate triaging and guide stepped models of healthcare delivery.
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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
    除了提高鼻咽癌(NPC)的生存率,晚期辐射毒性令人震惊地阻碍了幸存者的生活质量。缺乏患者报告的症状负担调查来解决当地NPC幸存者对症状管理的未满足需求。
    对211名完成放射治疗3至120个月的鼻咽癌幸存者进行了单中心横断面调查。我们采用了中文版M.D.Anderson症状清单-头颈部模块(MDASI-HN-C),癌症治疗的功能评估-头颈部(FACT-HN-C),和一个从癌症幸存者中提取的问题“未满足的需求测量”(CASUN)。
    收集了200个有效回复。参与者至少有四种中度至重度症状(平均值=4.84,SD=4.99)。前五名的严重症状是口干,粘液问题,吞咽困难或咀嚼困难,牙齿或牙龈问题,和记忆问题。MDASI-HN-C分量表与体质、情感,功能,FACT-HN-C的HN特异性结构域未满足的症状管理需求与症状负担呈正相关,一般症状(调整后的比值比[ORadj]=1.566,95%CI=1.282-1.914,p<0.001)或前5种症状(ORadj=1.379,95%CI=1.185-1.604,p<0.001),而与RT后时间呈负相关(ORadj=0.981,95%CI[0.972,0.991],p<0.001)。
    几乎所有NPC幸存者都患有晚期毒性,它们与幸存者的感知错综复杂地相互作用,影响他们对症状管理的未满足需求。需要定期评估和分层的个性化支持性护理策略。
    UNASSIGNED: Alongside the improved survival of nasopharyngeal cancer (NPC), late radiation toxicities are alarmingly hampering survivors\' quality of life. A patient-reported symptom burden survey is lacking to address the unmet need for symptom management among local NPC survivors.
    UNASSIGNED: A single-center cross-sectional survey was conducted on 211 NPC survivors who had completed radiation therapy for three to 120 months. We employed the Chinese version M. D. Anderson Symptom Inventory - Head & Neck Module (MDASI-HN-C), Functional Assessment of Cancer Therapy - Head & Neck (FACT-HN-C), and a question extracted from the Cancer Survivors\' Unmet Needs Measure (CaSUN).
    UNASSIGNED: Two hundred valid responses were collected. Participants suffered from at least four moderate to severe symptoms (mean = 4.84, SD = 4.99). The top five severe symptoms were dry mouth, mucus problems, difficulty swallowing or chewing, teeth or gum problems, and memory problems. MDASI-HN-C subscales were negatively correlated with the physical, emotional, functional, and HN-specific domains of the FACT-HN-C. The unmet need for symptom management was positively associated with symptom burden, either general symptoms (Adjusted odds ratio [ORadj] = 1.566, 95% CI = 1.282 - 1.914, p < 0.001) or top-5 symptoms (ORadj = 1.379, 95% CI = 1.185 - 1.604, p < 0.001), while negatively associated with post-RT time (ORadj = 0.981, 95% CI [0.972, 0.991], p < 0.001).
    UNASSIGNED: Virtually all NPC survivors suffer from late toxicities, which interplay with survivors\' perceptions intricately to affect their unmet needs for symptom management. Personalized supportive care strategies with regular assessments and stratifications are warranted.
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