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Quantitative Global Survey Results of Acute Back Pain Sufferers Across Four Countries. 四个国家急性背痛患者的全球定量调查结果。
IF 2.1 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2023-01-01 DOI: 10.2147/PROM.S396674
Nadine Maybaum, Salvador Rios-Martinez, Martin Johnson

Background: Surveys of back pain sufferers in the United States, China, Russia, and Germany were performed to better understand self-reported causes of acute nonspecific back pain and acute lower back pain among individuals engaging in sports and their preferred treatments.

Methods: In each country, 1000 participants were surveyed (Step 1) to identify a population of nonspecific acute back pain sufferers, understand pain and treatment characteristics, and generate profiles for individuals with long-lasting (≥7 days) acute lower back pain. Subsequently, 200 participants with acute lower back pain episodes (7-21 days) and sports participation were identified in each country and completed surveys (Step 2) about sociodemographic, pain, treatment characteristics, and causes/triggers of long-lasting acute lower back pain episodes.

Results: In the United States, China, Russia, and Germany, respectively, 59%, 49%, 61%, and 63% of respondents reported ≥1 episode of nonspecific acute back pain in the previous 6 months. Average numbers of monthly nonspecific acute back pain episodes in the United States, Russia, Germany, and China were 2.5, 1.8, 1.3, and 0.8, respectively. Prevalence of acute lower back pain associated with sports/leisure activities ranged from 20% (Russia and Germany) to 46% (China). Onset of long-lasting acute lower back pain was between ages 30 and 33 years, limiting usual activities and reducing walking distance in 60% to 85% of respondents across all countries. Acute lower back pain started post-exercise within the first day for ≥75% of respondents. Most popular nonprescription and prescription treatments for acute lower back pain were creams/gels in Russia, creams/gels and oral painkillers in Germany, oral painkillers in the United States, and hot/cold patches in China.

Conclusion: These results help to better understand acute back pain triggers, features, and treatment preferences among sports participants in different countries. Further research is warranted to develop preventative strategies.

Trial registration: Not applicable.

背景:对美国、中国、俄罗斯和德国的背痛患者进行了调查,以更好地了解参与运动的个体中急性非特异性背痛和急性下背痛的自我报告原因及其首选治疗方法。方法:在每个国家,1000名参与者被调查(第1步),以确定非特异性急性腰痛患者群体,了解疼痛和治疗特征,并生成长期(≥7天)急性腰痛患者的概况。随后,在每个国家确定了200名急性腰痛发作(7-21天)和参加运动的参与者,并完成了关于长期急性腰痛发作的社会人口学、疼痛、治疗特征和原因/触发因素的调查(第二步)。结果:在美国、中国、俄罗斯和德国,分别有59%、49%、61%和63%的受访者报告在过去6个月内有≥1次非特异性急性背痛发作。在美国、俄罗斯、德国和中国,每月非特异性急性背痛发作的平均次数分别为2.5次、1.8次、1.3次和0.8次。与运动/休闲活动相关的急性腰痛患病率从20%(俄罗斯和德国)到46%(中国)不等。长期急性下背部疼痛的发病年龄在30至33岁之间,在所有国家的60%至85%的受访者中,这限制了日常活动并缩短了步行距离。≥75%的受访者在运动后第一天出现急性腰痛。急性腰痛最流行的非处方和处方治疗方法是俄罗斯的面霜/凝胶,德国的面霜/凝胶和口服止痛药,美国的口服止痛药,以及中国的热/冷贴片。结论:这些结果有助于更好地了解不同国家运动参与者的急性背痛诱因、特征和治疗偏好。有必要进一步研究以制定预防策略。试验注册:不适用。
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引用次数: 0
Patient-Reported Outcomes in Ovarian Cancer: Facilitating and Enhancing the Reporting of Symptoms, Adverse Events, and Subjective Benefit of Treatment in Clinical Trials and Clinical Practice. 卵巢癌患者报告的结果:促进和加强临床试验和临床实践中症状、不良事件和治疗的主观获益的报告
IF 2.1 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2023-01-01 DOI: 10.2147/PROM.S297301
Rachel Campbell, Madeleine T King, Martin R Stockler, Yeh Chen Lee, Felicia T Roncolato, Michael L Friedlander

Patient-reported outcomes (PROs) provide a valid, standardized way of assessing symptoms, adverse events and the subjective benefit of treatment from the patient's perspective. Assessment of PROs is critical in ovarian cancer due to the high morbidity of the disease and its treatments. Several well-validated PRO measures are available to assess PROs in ovarian cancer. Their inclusion in clinical trials can provide evidence on the benefits and harms of new treatments based on patients' experiences to guide improvements in clinical practice and health policy. Aggregate PRO data collected in clinical trials can be used to inform patients about likely treatment impacts and assist them to make informed treatment decisions. In clinical practice, PRO assessments can facilitate monitoring of a patient's symptoms throughout treatment and follow-up to guide their clinical management; in this context, an individual patient's responses can facilitate communication with their treating clinician about troublesome symptoms and their impact on their quality of life. This literature review aimed to provide clinicians and researchers with a better understanding of why and how PROs can be incorporated into ovarian cancer clinical trials and routine clinical practice. We discuss the importance of assessing PROs throughout the ovarian cancer disease and treatment trajectory in both clinical trials and clinical practice, and provide examples from existing literature to illustrate the uses of PROs as the goals of treatment change in each setting.

患者报告的结果(pro)提供了一种有效的、标准化的方法,从患者的角度评估症状、不良事件和治疗的主观益处。由于卵巢癌的高发病率及其治疗方法,评估PROs对卵巢癌至关重要。几种经过验证的PRO测量方法可用于评估卵巢癌的PRO。将它们纳入临床试验可以根据患者的经验提供新疗法利弊的证据,以指导临床实践和卫生政策的改进。临床试验中收集的总体PRO数据可用于告知患者可能的治疗影响,并帮助他们做出明智的治疗决策。在临床实践中,PRO评估有助于在整个治疗和随访过程中监测患者的症状,以指导其临床管理;在这种情况下,个体患者的反应可以促进与治疗他们的临床医生就麻烦的症状及其对他们生活质量的影响进行沟通。本文献综述旨在为临床医生和研究人员提供更好的理解为什么以及如何将PROs纳入卵巢癌临床试验和常规临床实践。我们讨论了在临床试验和临床实践中评估整个卵巢癌疾病和治疗轨迹的PROs的重要性,并提供了现有文献中的例子来说明在每种情况下将PROs作为治疗改变的目标。
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引用次数: 0
Content Validation of Patient-Reported Sleep Measures and Development of a Conceptual Model of Sleep Disturbance in Patients with Moderate-to-Severe, Uncontrolled Asthma. 患者自述睡眠测量的内容验证及中重度未控制哮喘患者睡眠障碍概念模型的建立
IF 2.1 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2023-01-01 DOI: 10.2147/PROM.S392666
Asif H Khan, Katherine Kosa, Lucia De Prado Gomez, Diane Whalley, Siddhesh Kamat, Marci Clark

Purpose: Sleep disturbance is common in patients with asthma and can lead to subsequent impacts on health-related quality of life (HRQOL). Fit-for-purpose patient-reported outcome measures (PROMs) assessing asthma-related sleep disturbance and next-day HRQOL impact (next-day impact) are needed to evaluate disease burden and treatment effects.

Patients and methods: Adults (18-65 years) from three US clinics were recruited for semistructured interviews. Concept elicitation (CE) identified how asthma affects participants' sleep and how asthma-related sleep disturbances impact their daily lives, which informed conceptual model development. Cognitive debriefing (CD) of the Asthma Sleep Disturbance Questionnaire (ASDQ), Sleep Diary, and Patient-Reported Outcomes Measurement Information System Sleep-Related Impairment Short Form 8a (PROMIS SRI SF8a) was completed to assess each measure's content validity.

Results: Twelve individuals participated in two interview rounds (6 individuals per round). Participants most frequently reported asthma-related nighttime awakening and decreased sleep quality and duration. Negative impacts of a poor night's sleep due to asthma symptoms included feeling tired/fatigue/lack of energy and subsequent negative impacts on physical functioning, emotions and mood, mental functioning, work or volunteerism, and social functioning. Across both rounds of CD interviews, participants generally found the Sleep Diary and PROMIS SRI SF8a items relevant and easy to complete with no modifications. The ASDQ was modified for clarity and consistency.

Conclusion: As described in the conceptual model, asthma affects multiple aspects of sleep that can cause next-day fatigue and other subsequent negative HRQOL impacts. This study demonstrates that the ASDQ, Sleep Diary, and PROMIS SRI SF8a items are comprehensive, relevant, and appropriate for patients with moderate-to-severe, uncontrolled asthma. Evaluation of psychometric properties for the ASDQ, Sleep Diary, and PROMIS SRI SF8a based on clinical trial data in patients with moderate-to-severe, uncontrolled asthma will further support their use.

目的:睡眠障碍在哮喘患者中很常见,并可导致健康相关生活质量(HRQOL)的后续影响。评估哮喘相关睡眠障碍和次日HRQOL影响(次日影响)需要符合目的的患者报告结果测量(PROMs)来评估疾病负担和治疗效果。患者和方法:从三家美国诊所招募成人(18-65岁)进行半结构化访谈。概念启发(CE)确定了哮喘如何影响参与者的睡眠,以及哮喘相关的睡眠障碍如何影响他们的日常生活,这为概念模型的发展提供了信息。完成哮喘睡眠障碍问卷(ASDQ)、睡眠日记和患者报告结果测量信息系统睡眠相关障碍短表8a (PROMIS SRI SF8a)的认知汇报(CD),以评估每个测量的内容效度。结果:12人参加了两轮面试(每轮6人)。参与者最常报告与哮喘有关的夜间觉醒和睡眠质量和持续时间下降。由于哮喘症状导致的夜间睡眠不好的负面影响包括感到疲倦/疲劳/缺乏能量,以及随后对身体功能、情绪和情绪、精神功能、工作或志愿服务以及社会功能的负面影响。在两轮CD访谈中,参与者普遍认为睡眠日记和PROMIS SRI SF8a项目相关且易于完成,无需修改。为了清晰和一致,对ASDQ进行了修改。结论:正如概念模型所描述的,哮喘影响睡眠的多个方面,可能导致第二天的疲劳和其他随后的负面HRQOL影响。本研究表明,ASDQ、睡眠日记和PROMIS SRI SF8a项目是全面、相关的,适用于中重度、不受控制的哮喘患者。基于临床试验数据对ASDQ、睡眠日记和PROMIS SRI SF8a在中重度、未控制哮喘患者中的心理测量特性进行评估,将进一步支持其使用。
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引用次数: 0
The Effect of Armed Conflict on Treatment Interruption, Its Outcome and Associated Factors Among Chronic Disease Patients in North East, Amhara, Ethiopia, 2022. 武装冲突对埃塞俄比亚阿姆哈拉东北部慢性病患者治疗中断的影响及其结果和相关因素,2022
IF 2.1 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2023-01-01 DOI: 10.2147/PROM.S388426
Betelhem Mesfin, Alexander Mersha Demise, Mullu Shiferaw, Freweyni Gebreegziabher, Fentaw Girmaw

Background: The health services delivery system is debilitated in conflict setting areas due to damage of health facilities and attack on health care providers. Armed conflict is a complex phenomenon which causes a large amount of death and disability worldwide. However, there is lack of information towards treatment interruption among chronic disease patients in conflict areas. Hence, this study was conducted to assess the prevalence of armed conflict induced treatment interruption and its outcome among chronic disease patients.

Methods: A mixed cross sectional study design was conducted on a total of 399 sample size at North Wollo and Waghimra zone hospitals. To select study participants a consecutive sampling method was used. Multiple logistic regressions were computed to evaluate the association and thematic analysis was used to analyse qualitative data.

Results: From the total 399 study participants, 264 (64.6%) study participants interrupted their medication. Treatment interruption is significantly associated with poor service availability and perceived high stress.

Conclusion: War has detrimental health effects, both immediate and long term, on populations. Treatment interruptions due to armed conflict were caused by poor health care access, lack of medications and lack of transport and displacement of hospital staff, insecurity and fear. Treatment interruption results in morbidity, mortality, lifelong complications, disability, psychological and economic impact.

背景:由于卫生设施的破坏和对卫生保健提供者的攻击,卫生服务提供系统在冲突地区变得衰弱。武装冲突是一种复杂的现象,在世界范围内造成大量死亡和残疾。然而,缺乏冲突地区慢性病患者治疗中断的信息。因此,本研究旨在评估武装冲突导致的慢性疾病患者治疗中断的发生率及其结果。方法:采用混合横断面研究设计,在北Wollo和Waghimra地区医院共399个样本量进行研究。为了选择研究参与者,我们采用了连续抽样的方法。使用多重逻辑回归来评估相关性,并使用专题分析来分析定性数据。结果:在399名研究参与者中,264名(64.6%)研究参与者中断了他们的药物治疗。治疗中断与服务可用性差和感知到的高压力显著相关。结论:战争对人口的健康有直接和长期的不利影响。武装冲突造成的治疗中断是由于卫生保健条件差、缺乏药品、缺乏交通工具和医院工作人员流离失所、不安全和恐惧造成的。治疗中断导致发病率、死亡率、终身并发症、残疾、心理和经济影响。
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引用次数: 0
The PCQ-Infertility Revised: A New Digital Instrument to Measure Treatment Satisfaction of Fertility Patients. pcq -不孕症修正:一种衡量不孕症患者治疗满意度的新型数字仪器。
IF 2.1 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2023-01-01 DOI: 10.2147/PROM.S416182
Lotte van der Kolk, Ellen Smit, Josée Bloemer, Lise Marit van Wijk

Background: One of the key dimensions of healthcare quality is patient-centeredness, which represents how well healthcare is geared towards patients' needs and wishes. Many questionnaires that measure the patient-centeredness are long and complicated, eliciting non-response or careless responding. Moreover, responses to some commonly used questionnaires are difficult to interpret. The Patient-Centeredness Questionnaire-Infertility (PCQ-Infertility) is used to measure the patient's experience of fertility healthcare quality. The aim of this study was to improve the PCQ-Infertility to allow large-scale clinical implementation.

Methods: The study was performed in three parts. First, shortcomings of the original PCQ-Infertility were identified by evaluation of expert opinions. Second, the number of items were reduced, and items were rescaled and rephrased. Third, 844 patients filled in the original PCQ-Infertility and 260 patients filled in the revised PCQ-Infertility and reliability analyses were performed. In addition, a confirmatory factor analysis was performed on the revised PCQ-Infertility.

Results: The number of items in the revised questionnaire was reduced by 24% (from 51 to 39 items), which increased the internal consistency and reliability. The reliability analyses and confirmatory factor analysis indicated high consistency and convergent validity in all seven dimensions (accessibility, information, communication, patient involvement, respect for patient's values, continuity and transition, and competence) of the revised PCQ-Infertility.

Conclusion: The revised PCQ-Infertility is a more valid and reliable instrument than the original PCQ-Infertility, easier to interpret and shorter. Therefore, large-scale clinical implementation and data analysis are now possible, giving the opportunity for fertility care professionals to evaluate and improve their healthcare.

背景:医疗保健质量的一个关键维度是以患者为中心,这代表了医疗保健如何很好地满足患者的需求和愿望。许多测量以病人为中心的问卷都很长很复杂,容易引起无反应或漫不经心的回答。此外,一些常用问卷的回答很难解释。采用以患者为中心的不孕症问卷(pcq -不孕症)来衡量患者对生育保健质量的体验。本研究的目的是改进pcq -不孕症,以便大规模临床应用。方法:研究分为三部分。首先,通过对专家意见的评估,找出了原pcq -不孕症的不足之处。其次,减少了项目的数量,并重新调整了项目的规模和措辞。第三,填写原pcq -不孕症量表844例,修改后pcq -不孕症量表260例,进行信度分析。此外,对修订后的pcq -不孕症进行验证性因素分析。结果:修订后问卷的题目数减少了24%(由51项减至39项),提高了问卷的内部一致性和信度。信度分析和验证性因子分析表明,修订后的《不孕不育诊断手册》在可及性、信息、沟通、患者参与、尊重患者价值观、连续性和过渡性、能力等7个维度均具有较高的一致性和收敛效度。结论:修订后的pcq -不孕症量表比原来的pcq -不孕症量表更有效、更可靠、更易于解释、更简短。因此,大规模的临床实施和数据分析现在是可能的,为生育护理专业人员提供了评估和改善其医疗保健的机会。
{"title":"The PCQ-Infertility Revised: A New Digital Instrument to Measure Treatment Satisfaction of Fertility Patients.","authors":"Lotte van der Kolk,&nbsp;Ellen Smit,&nbsp;Josée Bloemer,&nbsp;Lise Marit van Wijk","doi":"10.2147/PROM.S416182","DOIUrl":"https://doi.org/10.2147/PROM.S416182","url":null,"abstract":"<p><strong>Background: </strong>One of the key dimensions of healthcare quality is patient-centeredness, which represents how well healthcare is geared towards patients' needs and wishes. Many questionnaires that measure the patient-centeredness are long and complicated, eliciting non-response or careless responding. Moreover, responses to some commonly used questionnaires are difficult to interpret. The Patient-Centeredness Questionnaire-Infertility (PCQ-Infertility) is used to measure the patient's experience of fertility healthcare quality. The aim of this study was to improve the PCQ-Infertility to allow large-scale clinical implementation.</p><p><strong>Methods: </strong>The study was performed in three parts. First, shortcomings of the original PCQ-Infertility were identified by evaluation of expert opinions. Second, the number of items were reduced, and items were rescaled and rephrased. Third, 844 patients filled in the original PCQ-Infertility and 260 patients filled in the revised PCQ-Infertility and reliability analyses were performed. In addition, a confirmatory factor analysis was performed on the revised PCQ-Infertility.</p><p><strong>Results: </strong>The number of items in the revised questionnaire was reduced by 24% (from 51 to 39 items), which increased the internal consistency and reliability. The reliability analyses and confirmatory factor analysis indicated high consistency and convergent validity in all seven dimensions (accessibility, information, communication, patient involvement, respect for patient's values, continuity and transition, and competence) of the revised PCQ-Infertility.</p><p><strong>Conclusion: </strong>The revised PCQ-Infertility is a more valid and reliable instrument than the original PCQ-Infertility, easier to interpret and shorter. Therefore, large-scale clinical implementation and data analysis are now possible, giving the opportunity for fertility care professionals to evaluate and improve their healthcare.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"14 ","pages":"223-234"},"PeriodicalIF":2.1,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/7e/42/prom-14-223.PMC10362858.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9860919","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Pregnant Women's Experiences with Midwifery-Led Antenatal Care Services in Peri-Urban Communities in Karachi, Pakistan. 巴基斯坦卡拉奇城郊社区孕妇接受助产士主导的产前保健服务的经验。
IF 2.1 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2023-01-01 DOI: 10.2147/PROM.S404476
Nida Salman Yazdani, Kaniz Amna Haider, Amna Khan, Syed Ali Jaffar Zaidi, Akbar Rajani, Imran Nisar, Fyezah Jehan, Zahra Hoodbhoy

Purpose: To understand pregnant women's experience with midwifery-led antenatal care services using the Respectful Maternity Care charter in primary health centers in Karachi, Pakistan.

Methods: This cross-sectional study was at Rehri Goth and Ibrahim Hyderi, two peri-urban communities in Karachi, Pakistan, where women receive antenatal care services. All pregnant women in their third trimester who consented during the study period were included. The participants were asked about access to care, antenatal care experience, person-centered approach, and general satisfaction with the facility using a pre-designed questionnaire. These themes were mapped onto the universal Respectful Maternity Care charter. Descriptive statistics were used to summarize the findings in each of these themes. Multivariable logistic regression techniques to determine the relationship between the dependent and independent variables.

Results: There were 904 women who agreed to participate in this study during January to December 2021. Majority of the women (94%, n=854) were satisfied with the operating hours and cleanliness. More than 90% of the women reported positive experiences regarding privacy, respectful treatment by midwives, and non-discriminatory care. However, 40% (n=362) of the women reported not receiving adequate information and informed consent before a medical procedure, while 65% (n=587) reported poor counseling for birth preparedness. Maternal age, women's occupation, women's education, and parity were found to be significantly associated with respect provided, satisfaction with counseling and the consent process.

Conclusion: This study reported satisfaction of pregnant women with the facility's ambiance, respect, and care; however, poor communication skills regarding consent and antenatal counseling were reported. The findings suggest the need for more efficient strategies, such as regular respectful maternity care and technical training to strengthen midwife-patient interactions and enhance overall satisfaction, thus improving maternal and newborn outcomes.

目的:了解孕妇在巴基斯坦卡拉奇初级保健中心使用尊重产妇护理宪章的助产士领导的产前保健服务的经验。方法:这项横断面研究是在Rehri Goth和Ibrahim Hyderi,巴基斯坦卡拉奇的两个城际社区,那里的妇女接受产前保健服务。所有在研究期间同意的妊娠晚期的孕妇都被包括在内。参与者被问及获得护理,产前护理经验,以人为本的方法,并使用预先设计的问卷对设施的总体满意度。这些主题被纳入《尊重产妇护理宪章》。描述性统计用于总结每个主题的调查结果。多变量逻辑回归技术,以确定因变量和自变量之间的关系。结果:有904名女性同意在2021年1月至12月期间参加这项研究。大多数女性(94%,n=854)对手术时间和清洁度感到满意。90%以上的妇女报告了在隐私、助产士的尊重对待和非歧视护理方面的积极经历。然而,40% (n=362)的妇女报告在医疗程序前没有得到充分的信息和知情同意,而65% (n=587)的妇女报告在分娩准备方面缺乏咨询。研究发现,产妇年龄、妇女的职业、妇女的教育程度和平等程度与所提供的尊重、对咨询的满意度和同意过程显著相关。结论:本研究报告了孕妇对设施的氛围、尊重和护理的满意度;然而,据报道,在同意和产前咨询方面的沟通技巧较差。研究结果表明,需要采取更有效的策略,例如定期提供尊重产妇的护理和技术培训,以加强助产士与患者的互动,提高总体满意度,从而改善孕产妇和新生儿的预后。
{"title":"Pregnant Women's Experiences with Midwifery-Led Antenatal Care Services in Peri-Urban Communities in Karachi, Pakistan.","authors":"Nida Salman Yazdani,&nbsp;Kaniz Amna Haider,&nbsp;Amna Khan,&nbsp;Syed Ali Jaffar Zaidi,&nbsp;Akbar Rajani,&nbsp;Imran Nisar,&nbsp;Fyezah Jehan,&nbsp;Zahra Hoodbhoy","doi":"10.2147/PROM.S404476","DOIUrl":"https://doi.org/10.2147/PROM.S404476","url":null,"abstract":"<p><strong>Purpose: </strong>To understand pregnant women's experience with midwifery-led antenatal care services using the Respectful Maternity Care charter in primary health centers in Karachi, Pakistan.</p><p><strong>Methods: </strong>This cross-sectional study was at Rehri Goth and Ibrahim Hyderi, two peri-urban communities in Karachi, Pakistan, where women receive antenatal care services. All pregnant women in their third trimester who consented during the study period were included. The participants were asked about access to care, antenatal care experience, person-centered approach, and general satisfaction with the facility using a pre-designed questionnaire. These themes were mapped onto the universal Respectful Maternity Care charter. Descriptive statistics were used to summarize the findings in each of these themes. Multivariable logistic regression techniques to determine the relationship between the dependent and independent variables.</p><p><strong>Results: </strong>There were 904 women who agreed to participate in this study during January to December 2021. Majority of the women (94%, n=854) were satisfied with the operating hours and cleanliness. More than 90% of the women reported positive experiences regarding privacy, respectful treatment by midwives, and non-discriminatory care. However, 40% (n=362) of the women reported not receiving adequate information and informed consent before a medical procedure, while 65% (n=587) reported poor counseling for birth preparedness. Maternal age, women's occupation, women's education, and parity were found to be significantly associated with respect provided, satisfaction with counseling and the consent process.</p><p><strong>Conclusion: </strong>This study reported satisfaction of pregnant women with the facility's ambiance, respect, and care; however, poor communication skills regarding consent and antenatal counseling were reported. The findings suggest the need for more efficient strategies, such as regular respectful maternity care and technical training to strengthen midwife-patient interactions and enhance overall satisfaction, thus improving maternal and newborn outcomes.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"14 ","pages":"127-136"},"PeriodicalIF":2.1,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10182793/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9479077","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 3
Acceptability and Feasibility of Delivering Decision Aids to Veterans for Management of Knee Osteoarthritis - A Pilot Study. 为退伍军人膝关节骨关节炎管理提供决策辅助的可接受性和可行性-一项试点研究。
IF 2.1 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2023-01-01 DOI: 10.2147/PROM.S386937
Clifford A Reilly, Makenna L Rice, Dylan J Parker, Philip P Goodney, Jon D Lurie, Said A Ibrahim, Eric R Henderson

Introduction: Decision aids are effective tools in facilitating patient-centered care and patient involvement in the decision-making process. Given unique barriers to providing patient-centered care for Veterans, implementation of decision aids may improve overall quality of care. We aimed to assess the acceptability and feasibility of video-based and pamphlet-based decision aid use in Veterans with knee osteoarthritis.

Materials and methods: Veterans considering treatment for knee osteoarthritis received either an online video-based aid, pamphlet-based aid, or both before their surgical consult. At their visit, patients completed written pre-visit and post-visit questionnaires. The pre-visit questionnaire included questions about the patient's demographics, decision-making preferences, experiences using the assigned decision aids, and the Hip-Knee Decision Quality Instrument. The post-visit questionnaire assessed the patient's overall experience with the decision-making process and how use of the decision aid influenced their discussion with the physician.

Results: All 16 patients who received the pamphlet-based aid reviewed the decision aid before their visit, compared to only five of the 12 patients who received the video-based aid. Thirteen of 20 patients indicated that they preferred to share treatment decision-making with their physician. Seventeen of 20 patients believed they would feel comfortable questioning the treatment recommendation of their surgeon after decision aid use. Most patients reported a positive experience using their decision aid, regardless of modality, and found it easily comprehensible and useful in visit preparation. A preference for a pamphlet-based aid was expressed by the majority of patients.

Conclusion: Veterans considering treatment for knee osteoarthritis are well prepared to engage in a patient-centered care experience. Most patients preferred sharing the decision-making process with their physician and felt comfortable questioning them about treatment recommendations. Decision aids helped Veterans feel more informed about their treatment options and improved engagement and discussion with their physician. Pamphlet-based aids were utilized more reliably than video-based aids.

导言:辅助决策是促进以患者为中心的护理和患者参与决策过程的有效工具。考虑到为退伍军人提供以病人为中心的护理的独特障碍,决策辅助的实施可能会提高护理的整体质量。我们的目的是评估基于视频和基于小册子的决策辅助在患有膝关节骨关节炎的退伍军人中的可接受性和可行性。材料和方法:考虑治疗膝骨关节炎的退伍军人在手术会诊前,要么接受基于在线视频的辅助,要么接受基于小册子的辅助,要么两者兼而有之。在他们的访问中,患者完成了书面的访问前和访问后问卷。访前问卷包括患者的人口统计学、决策偏好、使用指定决策辅助工具的经验和髋关节-膝关节决策质量工具等问题。访问后问卷评估患者的总体经验与决策过程,以及如何使用决策辅助影响他们与医生的讨论。结果:所有16名接受基于小册子的辅助治疗的患者在就诊前都回顾了决策辅助,而12名接受基于视频的辅助治疗的患者中只有5名患者在就诊前回顾了决策辅助。20名患者中有13名表示,他们更愿意与医生分享治疗决策。20名患者中有17名认为,在使用决策辅助工具后,他们可以放心地质疑外科医生的治疗建议。大多数患者报告了积极的经验,使用他们的决策援助,无论形式,并发现它很容易理解和有用的访问准备。大多数患者倾向于使用以小册子为基础的辅助工具。结论:考虑治疗膝骨关节炎的退伍军人做好了充分的准备,可以参与以患者为中心的护理体验。大多数患者更愿意与他们的医生分享决策过程,并对向他们询问治疗建议感到自在。决策辅助帮助退伍军人更了解他们的治疗选择,并改善了与医生的接触和讨论。以小册子为基础的辅助工具比以视频为基础的辅助工具更可靠。
{"title":"Acceptability and Feasibility of Delivering Decision Aids to Veterans for Management of Knee Osteoarthritis - A Pilot Study.","authors":"Clifford A Reilly,&nbsp;Makenna L Rice,&nbsp;Dylan J Parker,&nbsp;Philip P Goodney,&nbsp;Jon D Lurie,&nbsp;Said A Ibrahim,&nbsp;Eric R Henderson","doi":"10.2147/PROM.S386937","DOIUrl":"https://doi.org/10.2147/PROM.S386937","url":null,"abstract":"<p><strong>Introduction: </strong>Decision aids are effective tools in facilitating patient-centered care and patient involvement in the decision-making process. Given unique barriers to providing patient-centered care for Veterans, implementation of decision aids may improve overall quality of care. We aimed to assess the acceptability and feasibility of video-based and pamphlet-based decision aid use in Veterans with knee osteoarthritis.</p><p><strong>Materials and methods: </strong>Veterans considering treatment for knee osteoarthritis received either an online video-based aid, pamphlet-based aid, or both before their surgical consult. At their visit, patients completed written pre-visit and post-visit questionnaires. The pre-visit questionnaire included questions about the patient's demographics, decision-making preferences, experiences using the assigned decision aids, and the Hip-Knee Decision Quality Instrument. The post-visit questionnaire assessed the patient's overall experience with the decision-making process and how use of the decision aid influenced their discussion with the physician.</p><p><strong>Results: </strong>All 16 patients who received the pamphlet-based aid reviewed the decision aid before their visit, compared to only five of the 12 patients who received the video-based aid. Thirteen of 20 patients indicated that they preferred to share treatment decision-making with their physician. Seventeen of 20 patients believed they would feel comfortable questioning the treatment recommendation of their surgeon after decision aid use. Most patients reported a positive experience using their decision aid, regardless of modality, and found it easily comprehensible and useful in visit preparation. A preference for a pamphlet-based aid was expressed by the majority of patients.</p><p><strong>Conclusion: </strong>Veterans considering treatment for knee osteoarthritis are well prepared to engage in a patient-centered care experience. Most patients preferred sharing the decision-making process with their physician and felt comfortable questioning them about treatment recommendations. Decision aids helped Veterans feel more informed about their treatment options and improved engagement and discussion with their physician. Pamphlet-based aids were utilized more reliably than video-based aids.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"14 ","pages":"49-55"},"PeriodicalIF":2.1,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/0c/32/prom-14-49.PMC10040150.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9203400","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The Transthyretin Amyloidosis - Quality of Life (ATTR-QOL) Questionnaire: Development of a Conceptual Model and Disease-Specific Patient-Reported Outcome Measure. 转甲状腺素淀粉样变性-生活质量(atr - qol)问卷:概念模型的发展和疾病特异性患者报告的结果测量。
IF 2.1 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2023-01-01 DOI: 10.2147/PROM.S411721
Meaghan O'Connor, Kristen Hsu, Lynne Broderick, Kristen L McCausland, Kaitlin LaGasse, Sabrina Rebello, Michelle Carty, Isabelle Lousada

Purpose: Patients with transthyretin amyloidosis (ATTR) experience a wide variety of symptoms and impacts on health-related quality of life (HRQoL). However, the lack of an ATTR-specific patient-reported outcome (PRO) measure has made consistent measurement of HRQoL in ATTR challenging. This paper describes the development of a conceptual model and subsequent content for the Transthyretin Amyloidosis - Quality of Life Questionnaire (ATTR-QOL), an ATTR-specific PRO measure.

Methods: This was a cross-sectional, non-interventional, US-based study. The study design included three stages: 1) a targeted literature review followed by qualitative data collection with patients and experts; 2) development of a conceptual model and PRO measure; and 3) review of the PRO measure using a modified Delphi method, translatability assessment, and interviews with patients and experts. Revisions were made to the measure after each round of review.

Results: Forty-four patients and 29 experts participated in this study. The conceptual model included two primary concepts of interest: symptoms (cardiac, neuropathic-peripheral, neuropathic-autonomic, and other) and impacts (eg, physical, role, and mental/emotional functioning). Seventy-two items were created (32 symptoms; 40 impacts) to align with the model. A recall period of one month was selected based on participant input.

Conclusion: The ATTR-QOL was created with significant patient involvement and guidance from a multidisciplinary group of experts. The mix of patient and clinical perspectives helped to ensure a balanced representation of all relevant disease experiences and clinical specialties. With further refinement from psychometric testing, the ATTR-QOL will provide a standard, comprehensive measure for all ATTR-specific research including both clinical trials and clinical practice.

目的:甲状腺转视蛋白淀粉样变性(ATTR)患者会出现多种症状,并对健康相关生活质量(HRQoL)产生影响。然而,缺乏atr特异性的患者报告结果(PRO)测量方法使得对ATTR患者HRQoL的一致测量具有挑战性。本文描述了转甲状腺素淀粉样变性-生活质量问卷(atr - qol)的概念模型和后续内容的发展,这是一种针对atr的PRO测量方法。方法:这是一项横断面、非介入性、美国研究。研究设计包括三个阶段:1)有针对性的文献综述,然后与患者和专家进行定性数据收集;2)开发概念模型和PRO测量;3)采用改进的德尔菲法、可译性评估以及与患者和专家的访谈来回顾PRO措施。在每一轮审查后,对该措施进行了修订。结果:44名患者和29名专家参与了本研究。概念模型包括两个主要的感兴趣的概念:症状(心脏、神经病-周围、神经病-自主神经和其他)和影响(如身体、角色和精神/情感功能)。共创建72个项目(32个症状;40次撞击)与模型保持一致。根据参与者的输入选择一个月的回忆期。结论:atr - qol是在患者参与和多学科专家指导下制定的。患者和临床观点的结合有助于确保所有相关疾病经验和临床专业的平衡代表。随着心理测量测试的进一步完善,atr - qol将为包括临床试验和临床实践在内的所有atr特定研究提供一个标准的、全面的衡量标准。
{"title":"The Transthyretin Amyloidosis - Quality of Life (ATTR-QOL) Questionnaire: Development of a Conceptual Model and Disease-Specific Patient-Reported Outcome Measure.","authors":"Meaghan O'Connor,&nbsp;Kristen Hsu,&nbsp;Lynne Broderick,&nbsp;Kristen L McCausland,&nbsp;Kaitlin LaGasse,&nbsp;Sabrina Rebello,&nbsp;Michelle Carty,&nbsp;Isabelle Lousada","doi":"10.2147/PROM.S411721","DOIUrl":"https://doi.org/10.2147/PROM.S411721","url":null,"abstract":"<p><strong>Purpose: </strong>Patients with transthyretin amyloidosis (ATTR) experience a wide variety of symptoms and impacts on health-related quality of life (HRQoL). However, the lack of an ATTR-specific patient-reported outcome (PRO) measure has made consistent measurement of HRQoL in ATTR challenging. This paper describes the development of a conceptual model and subsequent content for the Transthyretin Amyloidosis - Quality of Life Questionnaire (ATTR-QOL), an ATTR-specific PRO measure.</p><p><strong>Methods: </strong>This was a cross-sectional, non-interventional, US-based study. The study design included three stages: 1) a targeted literature review followed by qualitative data collection with patients and experts; 2) development of a conceptual model and PRO measure; and 3) review of the PRO measure using a modified Delphi method, translatability assessment, and interviews with patients and experts. Revisions were made to the measure after each round of review.</p><p><strong>Results: </strong>Forty-four patients and 29 experts participated in this study. The conceptual model included two primary concepts of interest: symptoms (cardiac, neuropathic-peripheral, neuropathic-autonomic, and other) and impacts (eg, physical, role, and mental/emotional functioning). Seventy-two items were created (32 symptoms; 40 impacts) to align with the model. A recall period of one month was selected based on participant input.</p><p><strong>Conclusion: </strong>The ATTR-QOL was created with significant patient involvement and guidance from a multidisciplinary group of experts. The mix of patient and clinical perspectives helped to ensure a balanced representation of all relevant disease experiences and clinical specialties. With further refinement from psychometric testing, the ATTR-QOL will provide a standard, comprehensive measure for all ATTR-specific research including both clinical trials and clinical practice.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"14 ","pages":"213-222"},"PeriodicalIF":2.1,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/0c/20/prom-14-213.PMC10335277.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9814070","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 1
Risk Factors and Prognosis in Anti-NMDA Receptor Encephalitis Patients with Disturbance of Consciousness. 抗nmda受体脑炎患者意识障碍的危险因素及预后。
IF 2.1 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2023-01-01 DOI: 10.2147/PROM.S411260
Zhuowei Gong, Dayuan Lao, Fang Huang, Sirao Lv, Fengping Mao, Wen Huang

Purpose: Disturbance of consciousness is common in patients with severe anti-N-methyl-D-aspartate receptor (NMDAR) encephalitis. However, little is known about it. This study aimed to analyze the clinical manifestations and prognostic factors of anti-NMDAR encephalitis with disturbance of consciousness.

Methods: In this retrospective study, the clinical features, treatment results, and long-term outcomes of anti-NMDAR encephalitis patients with disturbance of consciousness were analyzed, and multivariate logistic regression was used to analyze the factors affecting their prognosis.

Results: In the group with disturbance of consciousness, the incidences of seizures, involuntary movements, pulmonary infection, mechanical ventilation, intensive care unit (ICU) admission, neutrophil-lymphocyte ratio (NLR), abnormal cerebrospinal fluid index, plasma exchange, and immunosuppressive therapy were higher than those in the group without disturbance of consciousness (all P<0.05). During the follow-up period (median: 36 months, range: 12-78 months), the modified Rankin scale (mRS) score, the maximum mRS score during hospitalization, the mRS score at discharge, and the mRS score at 12 months after discharge were higher in the disturbance of consciousness group (all P < 0.001). However, there was no significant difference in long-term outcomes and recurrence between the two groups. Multivariate logistic regression analysis showed that mechanical ventilation, elevated IgG index, and delayed immunotherapy were independent risk factors for poor outcomes in patients with anti-NMDAR encephalitis with disturbance of consciousness at 12 months (odds ratio: 22.591, 39.868, 1.195). The receiver operating characteristics (ROC) curve analysis showed that the area under the curve (AUC) of mechanical ventilation, elevated IgG index, and delayed immunotherapy was 0.971 (95% CI=0.934-1.000, P<0.001).

Conclusion: Mechanical ventilation, elevated IgG index, and delayed immunotherapy may be the influencing factors of poor prognosis of anti-NMDAR encephalitis patients with disturbance of consciousness. Although their condition is relatively serious, most patients with anti-NMDAR encephalitis with disturbance of consciousness will achieve favorable long-term outcomes after long-term treatment.

目的:重度抗n -甲基- d -天冬氨酸受体(NMDAR)脑炎患者常出现意识障碍。然而,人们对它知之甚少。本研究旨在分析伴有意识障碍的抗nmdar脑炎的临床表现及预后因素。方法:回顾性分析抗nmdar脑炎伴意识障碍患者的临床特点、治疗效果及远期结局,并采用多因素logistic回归分析影响其预后的因素。结果:意识障碍组癫痫发作、不自主运动、肺部感染、机械通气、重症监护病房(ICU)入院、中性粒细胞淋巴细胞比(NLR)、脑脊液指数异常、血浆交换、免疫抑制治疗发生率均高于无意识障碍组(均p)。机械通气、IgG指数升高、延迟免疫治疗可能是伴有意识障碍的抗nmdar脑炎患者预后不良的影响因素。虽然病情较为严重,但大多数伴有意识障碍的抗nmdar脑炎患者经过长期治疗后,远期疗效良好。
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引用次数: 0
Studies on Reliability and Measurement Error of Measurements in Medicine - From Design to Statistics Explained for Medical Researchers. 医学测量的可靠性和测量误差研究——为医学研究人员解释从设计到统计。
IF 2.1 Q3 HEALTH CARE SCIENCES & SERVICES Pub Date : 2023-01-01 DOI: 10.2147/PROM.S398886
Lidwine B Mokkink, Iris Eekhout, Maarten Boers, Cees P M van der Vleuten, Henrica C W de Vet

Reliability and measurement error are measurement properties that quantify the influence of specific sources of variation, such as raters, type of machine, or time, on the score of the individual measurement. Several designs can be chosen to assess reliability and measurement error of a measurement. Differences in design are due to specific choices about which sources of variation are varied over the repeated measurements in stable patients, which potential sources of variation are kept stable (ie, restricted), and about whether or not the entire measurement instrument (or measurement protocol) was repeated or only part of it. We explain how these choices determine how intraclass correlation coefficients and standard errors of measurement formulas are built for different designs by using Venn diagrams. Strategies for improving the measurement are explained, and recommendations for reporting the essentials of these studies are described. We hope that this paper will facilitate the understanding and improve the design, analysis, and reporting of future studies on reliability and measurement error of measurements.

可靠性和测量误差是量化特定变化源(如评分者、机器类型或时间)对单个测量得分的影响的测量属性。可以选择几种设计来评估测量的可靠性和测量误差。设计上的差异是由于特定的选择,即在稳定的患者中重复测量时改变哪些变异源,哪些潜在的变异源保持稳定(即限制),以及整个测量仪器(或测量方案)是否重复或仅部分重复。我们使用维恩图解释了这些选择如何决定如何为不同的设计构建测量公式的类内相关系数和标准误差。解释了改进测量的策略,并描述了报告这些研究要点的建议。我们希望本文将有助于理解和改进未来关于测量的可靠性和测量误差的研究的设计、分析和报告。
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引用次数: 2
期刊
Patient Related Outcome Measures
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