Patient Related Outcome Measures最新文献

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CONQUEST: A Quality Improvement Program for Defining and Optimizing Standards of Care for Modifiable High-Risk COPD Patients CONQUEST:定义和优化可修改高危COPD患者护理标准的质量改进计划
IF 2.1
Patient Related Outcome Measures Pub Date : 2022-02-01 DOI: 10.2147/prom.s296506
Luis Alves, R. Pullen, J. Hurst, M. Miravitlles, V. Carter, Rongchang Chen, A. Couper, M. Dransfield, Alexander Evans, A. Hardjojo, David Jones, Rupert C Jones, Margee Kerr, K. Kostikas, J. Marshall, F. Martinez, M. V. van Melle, R. Murray, S. Muro, C. Nordon, M. Pollack, C. Price, Anita Sharma, D. Singh, T. Winders, D. Price
{"title":"CONQUEST: A Quality Improvement Program for Defining and Optimizing Standards of Care for Modifiable High-Risk COPD Patients","authors":"Luis Alves, R. Pullen, J. Hurst, M. Miravitlles, V. Carter, Rongchang Chen, A. Couper, M. Dransfield, Alexander Evans, A. Hardjojo, David Jones, Rupert C Jones, Margee Kerr, K. Kostikas, J. Marshall, F. Martinez, M. V. van Melle, R. Murray, S. Muro, C. Nordon, M. Pollack, C. Price, Anita Sharma, D. Singh, T. Winders, D. Price","doi":"10.2147/prom.s296506","DOIUrl":"https://doi.org/10.2147/prom.s296506","url":null,"abstract":": The COllaboration on QUality improvement initiative for achieving Excellence in STandards of COPD care (CONQUEST) aims to improve the quality of COPD care in primary care. The CONQUEST target population includes patients diagnosed with COPD, and those undiagnosed but with COPD-like exacerbations, who are at high but modifiable risk of COPD exacerbations, increased morbidity, and mortality. Timely diagnosis and optimized management to reduce these risks is vital. There is a need for a quality improvement program (QIP) that enables long-term improvement of patient clinical outcomes via integration of the program into routine clinical care. Core to the CONQUEST program is the adoption of four specifically designed, globally applicable, and expert-agreed quality standards (QS) for modifiable high-risk COPD patients. Translation of the QS into clinical practice, and implementation of the QIP, is guided by the CONQUEST global operational protocol provided to sites meeting the minimum healthcare system requirements. Initial analyses of current practices are conducted to generate baseline assessments of need within healthcare systems and sites looking to implement the QIP. Implementation is supported by the provision of CONQUEST resources and tools, such as clinical decision support, that promote prompt identification and treatment of patients. Utilization of electronic medical record (EMR) and patient-reported data are integral components of the QIP. Regular, automated collection and analysis of data, combined with a cyclical review of the implementation process, will be conducted for long-term, continuous improvement and health impact evaluation. The CONQUEST QIP will be an important resource in the identification and management of patients with modifiable high-risk COPD. Embedding the CONQUEST QS into routine clinical practice with regular evaluation and feedback will result in long-term quality of care improvement.","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2022-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49450715","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 3
A Discrete Choice Experiment to Derive Health Utilities for Aromatic L-Amino Acid Decarboxylase (AADC) Deficiency in France. 法国芳香l -氨基酸脱羧酶(AADC)缺乏症的离散选择实验。
IF 2.1
Patient Related Outcome Measures Pub Date : 2022-01-25 eCollection Date: 2022-01-01 DOI: 10.2147/PROM.S332519
Adam B Smith, Andria Hanbury, Jennifer A Whitty, Igor Beitia Ortiz de Zarate, Florence Hammes, Gérard de Pouvourville, Katharina Buesch
{"title":"A Discrete Choice Experiment to Derive Health Utilities for Aromatic L-Amino Acid Decarboxylase (AADC) Deficiency in France.","authors":"Adam B Smith,&nbsp;Andria Hanbury,&nbsp;Jennifer A Whitty,&nbsp;Igor Beitia Ortiz de Zarate,&nbsp;Florence Hammes,&nbsp;Gérard de Pouvourville,&nbsp;Katharina Buesch","doi":"10.2147/PROM.S332519","DOIUrl":"https://doi.org/10.2147/PROM.S332519","url":null,"abstract":"<p><strong>Purpose: </strong>Cost-effectiveness evaluations of interventions require health utility data. However, in medical conditions, such as aromatic L-amino acid decarboxylase (AADC) deficiency, this presents problems due to the rarity of the disease. The study aim therefore was to employ a discrete choice experiment (DCE) to generate health utilities for AADC deficiency.</p><p><strong>Methods: </strong>A previous literature review, clinician and parent interviews had identified six key AADC deficiency attributes: mobility, muscle weakness, oculogyric crises (OCG), feeding ability, cognitive impairment and screaming. A representative sample of the French general population was recruited. Participants rated 5 health state vignettes describing AADC deficiency using time-trade-off (TTO) and standard gamble (SG). Additionally, participants rated the worst health state using the Health Utility Index version 3 (HUI3). Subsequently, participants completed DCE 11 choice sets. Indirect DCE part-worth utilities were converted to health utilities using the anchors from the TTO, SG and HUI3.</p><p><strong>Results: </strong>The DCE was completed online by 1001 participants (50.9% female; mean age 45.7 years). Most participants (596, 59.5%) provided consistent responses to the repeated choice task. Five models were evaluated, and one preference reversal (\"head control\"/\"sitting unaided\") was identified in all models. The rescaled utilities ranged from 0.3891 to 0.5577 (difference of 0.17 utilities) for TTO anchors corresponding to the worst (633233) and best (111111) health states. Health utilities ranged from 0.5534 to 0.7093 for the SG anchors. The disutility associated with a transition from \"no problems walking\" to \"bedridden\" was -0.0533, whereas disutility of moving from \"constant screaming\" relative to \"no screaming\" was -0.0248. The disutility associated with daily OCG was -0.0167. Disutilities for the other attributes were small although there were exceptions.</p><p><strong>Conclusion: </strong>A DCE was used to derive health utilities for AADC deficiency. These health utilities will subsequently be used in an economic model evaluating an AADC deficiency intervention.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2022-01-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/f6/b8/prom-13-21.PMC8800863.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39885812","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
Predictors of Non-Spontaneous Vaginal Delivery Among Mothers Who Gave Birth in Wachemo University Specialized Hospital, Hossana, Ethiopia, 2021. 在Wachemo大学专科医院分娩的母亲中非自然阴道分娩的预测因素,Hossana,埃塞俄比亚,2021。
IF 2.1
Patient Related Outcome Measures Pub Date : 2022-01-21 eCollection Date: 2022-01-01 DOI: 10.2147/PROM.S343866
Temesgen Tamirat, Lonsako Abute
{"title":"Predictors of Non-Spontaneous Vaginal Delivery Among Mothers Who Gave Birth in Wachemo University Specialized Hospital, Hossana, Ethiopia, 2021.","authors":"Temesgen Tamirat,&nbsp;Lonsako Abute","doi":"10.2147/PROM.S343866","DOIUrl":"https://doi.org/10.2147/PROM.S343866","url":null,"abstract":"<p><strong>Introduction: </strong>Non-spontaneous vaginal delivery, such as cesarean delivery and operative vaginal deliveries, provides births other than regular vaginal pregnancy. In taking effective steps to minimize the caesarean section rate and the issues associated with it, it would be useful to examine the determinants of instrumental deliveries and their key indications. Therefore, this study aimed to determine magnitude and related factors of non-spontaneous vaginal delivery.</p><p><strong>Methods: </strong>Facility-based analytical cross-sectional study design was used. A total sample size of 383 was used. All mothers who gave birth during data collection period and fulfill inclusion criteria were included in the study. Interviewer-administered data collection method was used. Data were entered in Epi-data and exported to SPSS to analyze both descriptive and advanced analysis.</p><p><strong>Results: </strong>About 24.4% of mothers' mode of delivery was non-spontaneous vaginal delivery. Those mothers whose occupation was housewives were 2.8 times more likely to give birth through non-spontaneous vaginal delivery than mothers whose occupation was teachers (AOR = 2.8 95% CI 1.103-7.261). Mothers with grand multipara were less likely to give birth through non-spontaneous vaginal delivery than nulliparous (AOR = 0.10 95% CI 0.022-0.468) and primipara (AOR = 0.17 95% CI 0.041-0.671). Mothers with complications during pregnancy were 3 times more likely to give birth via non-spontaneous vaginal delivery than mothers without complications during pregnancy. Mothers with non-macrosomic neonates and female neonatal sex were less likely experiencing to give birth through non-spontaneous vaginal delivery as compared to their respective reference groups.</p><p><strong>Conclusion: </strong>Magnitude of non-spontaneous vaginal delivery was high in this study. Being a housewife, having complications during pregnancy, nullipara and primipara, macrosomic fetus and male neonate were associated with outcome variable. Attention should be given for the housewives, experiencing complication during pregnancy, a fetus with big weight and male neonatal sex in order to minimize risks of non-spontaneous delivery.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2022-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/3f/f9/prom-13-9.PMC8789298.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39742400","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: 2
Patient Reported Outcome Measures After Breast Augmentation - Using the BREAST-Q IS. 隆胸术后的患者报告结果 - 使用 BREAST-Q IS。
IF 2.1
Patient Related Outcome Measures Pub Date : 2022-01-11 eCollection Date: 2022-01-01 DOI: 10.2147/PROM.S330163
Randi T Jayasinghe, Rasa Ruseckaite, Pragya Gartoulla, Elisabeth Elder, Ingrid Hopper
{"title":"Patient Reported Outcome Measures After Breast Augmentation - Using the BREAST-Q IS.","authors":"Randi T Jayasinghe, Rasa Ruseckaite, Pragya Gartoulla, Elisabeth Elder, Ingrid Hopper","doi":"10.2147/PROM.S330163","DOIUrl":"10.2147/PROM.S330163","url":null,"abstract":"<p><strong>Purpose: </strong>Cosmetic breast augmentation procedures are commonly performed breast device surgeries. The Australian Breast Device Registry (ABDR) administers a five-question patient reported outcome measure (PROM), the BREAST-Q Implant Surveillance module (BREAST-Q IS), to patients 1, 2 and 5 years after breast device surgery. The measure includes an open-ended question to add any comments. This study aimed to use the responses to this open-ended question to assess participants' experiences of breast devices 1 and 2 years after breast augmentation. The secondary objective was to identify emerging and important issues relating to breast augmentation and devices.</p><p><strong>Patients and methods: </strong>This qualitative descriptive study was conducted using a randomly selected sample of 268 responses to the open-ended question in the BREAST-Q IS, from the ABDR database. These responses were from patients who underwent breast augmentation between 2015 and 2018. Comments were analyzed using conventional content analysis in NVivo 12.</p><p><strong>Results: </strong>Four major themes were identified: satisfaction following breast augmentation, dissatisfaction following breast augmentation, complications and breast symptoms following breast augmentation and other comments. Two dominant themes were regarding satisfaction (n = 112) with overall surgical outcome, medical team, and post-operative appearance and complications and breast symptoms (n = 177) following breast augmentation. Emerging issues identified were rippling of breast implants and breast implant illness (BII).</p><p><strong>Conclusion: </strong>PROMs can be used to understand patients' perspectives on various aspects of their own surgical experiences. Participants provided responses regarding complications and breast symptoms experienced, and rippling of the breast implants and BII are emerging issues after breast augmentation.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2022-01-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/5d/0a/prom-13-1.PMC8761034.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39710421","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
Clinician and Patient Reporting of Symptomatic Adverse Events in Cancer Clinical Trials: Using CTCAE and PRO-CTCAE® to Provide Two Distinct and Complementary Perspectives. 临床医生和患者在癌症临床试验中对症不良事件的报告:使用CTCAE和PRO-CTCAE®提供两个不同的和互补的观点。
IF 2.1
Patient Related Outcome Measures Pub Date : 2022-01-01 DOI: 10.2147/PROM.S256567
Lori M Minasian, Ann O'Mara, Sandra A Mitchell
{"title":"Clinician and Patient Reporting of Symptomatic Adverse Events in Cancer Clinical Trials: Using CTCAE and PRO-CTCAE<sup>®</sup> to Provide Two Distinct and Complementary Perspectives.","authors":"Lori M Minasian,&nbsp;Ann O'Mara,&nbsp;Sandra A Mitchell","doi":"10.2147/PROM.S256567","DOIUrl":"https://doi.org/10.2147/PROM.S256567","url":null,"abstract":"<p><p>Inclusion of the patient perspective in the reporting of symptomatic adverse events provides different and complementary information to clinician reporting using the Common Terminology Criteria for Adverse Events (CTCAE). The National Cancer Institute's Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE<sup>®</sup>) is designed for patients to self-report their symptomatic adverse events in a manner that complements CTCAE reporting. Using CTCAE and PRO-CTCAE together offers the potential to refine our understanding of the prevalence and trajectory of lower grade AEs that can lead to elective discontinuation of therapy and diminished quality of life. This review addresses the development of PRO-CTCAE with an emphasis on the differences between PRO-CTCAE scores and CTCAE severity grades. This distinction is important when evaluating, grading and reporting toxicity and tolerability in cancer clinical trials.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/de/7f/prom-13-249.PMC9744864.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10363607","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: 5
Understanding Attitudes, Beliefs, and Behaviors Surrounding Menopause Transition: Results from Three Surveys. 了解更年期转变的态度、信念和行为:来自三项调查的结果。
IF 2.1
Patient Related Outcome Measures Pub Date : 2022-01-01 DOI: 10.2147/PROM.S375144
Gloria Richard-Davis, Andrea Singer, Deanna D King, Lisa Mattle
{"title":"Understanding Attitudes, Beliefs, and Behaviors Surrounding Menopause Transition: Results from Three Surveys.","authors":"Gloria Richard-Davis,&nbsp;Andrea Singer,&nbsp;Deanna D King,&nbsp;Lisa Mattle","doi":"10.2147/PROM.S375144","DOIUrl":"https://doi.org/10.2147/PROM.S375144","url":null,"abstract":"<p><strong>Purpose: </strong>To understand women's perspectives, attitudes, and beliefs surrounding menopause transition and increase understanding of digital technology use for symptom management.</p><p><strong>Patients and methods: </strong>Information was obtained using three studies of women aged 40-65 years experiencing menopause transition symptoms. The HealthyWomen online cross-sectional survey was designed to reflect an inclusive sociodemographic sample representative of the US population. BECOME was a blinded, ethnographic, qualitative research study of women's menopause transition experiences and comprised facilitator-led online asynchronous discussions, online homework entries, and audio-only teleconferences. The NODE.Health online, two-part, cross-sectional patient survey was designed to capture patient and healthcare provider (HCP) sentiment about the use of digital health technologies to address gaps in perimenopausal symptom knowledge and management.</p><p><strong>Results: </strong>The HealthyWomen survey included 1045 participants, 37 were included in BECOME, and 100 completed the NODE.Health survey. Hot flashes, night sweats, and sleep problems were the most frequently experienced symptoms in the HealthyWomen survey, and over half of participants experiencing symptoms felt the need to seek relief. Whether menopause was considered a medical problem or natural process differed by self-identified race, culture, and ethnicity, as did the likelihood of consulting a HCP over symptoms. Participants preferred to discuss menopause transition with HCPs who did not rush them, were good listeners, and had expertise in the area. Most technology experience was with health websites, but nearly half were unsatisfied with online resources describing menopause-related symptoms. Convenience, ease of use, and accessibility were the most common reasons for pursuing digital health technology.</p><p><strong>Conclusion: </strong>Factors such as cultural beliefs, values and attitudes towards menopause determine personal experiences. More open discussions with friends, family, and HCPs may raise awareness and reduce barriers to seeking help. To provide optimal care throughout the menopause transition, HCPs should consider patients' psychosocial and cultural backgrounds, and personal and subjective perspectives.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/9a/46/prom-13-273.PMC9760047.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10763651","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
A Systematic Review of Patient Engagement Experiences in Brain Disorders. 脑部疾病患者参与经验的系统回顾。
IF 2.1
Patient Related Outcome Measures Pub Date : 2022-01-01 DOI: 10.2147/PROM.S256396
Deborah Bertorello, Giampaolo Brichetto, Frans Folkvord, Alexandra Theben, Paola Zaratin
{"title":"A Systematic Review of Patient Engagement Experiences in Brain Disorders.","authors":"Deborah Bertorello,&nbsp;Giampaolo Brichetto,&nbsp;Frans Folkvord,&nbsp;Alexandra Theben,&nbsp;Paola Zaratin","doi":"10.2147/PROM.S256396","DOIUrl":"https://doi.org/10.2147/PROM.S256396","url":null,"abstract":"<p><strong>Background: </strong>Patient engagement is increasingly considered to be an important element in the treatment of brain disorders to optimise outcomes for patients, society, and healthcare systems. Nonetheless, scientific research examining methodologies to engage patients with brain diseases in Research and Innovation (R&I) is scarce.</p><p><strong>Aim: </strong>To review existing scientific evidence regarding the engagement of patients with brain disorders in research and innovation.</p><p><strong>Methods: </strong>Studies were retrieved from several bibliographic databases (publication date between January 2016 and April 2019) with pre-specified selection criteria.</p><p><strong>Results: </strong>In total, 49 articles were identified as meeting the inclusion criteria and were reviewed systematically. Results showed that there is limited evidence available on the impact and (cost-) effectiveness of patient engagement in (brain) research and innovation. Most published studies are protocols, guidelines, and discussion articles for patient engagement in health research and innovation. Overall, there exists a general consensus to engage patients in every step of the research procedure. Relevant evidence identified includes principles of engagement, definitions of stakeholder types, key considerations for planning, conducting and disseminating engaged research, potential engagement activities, and examples of promising practices.</p><p><strong>Discussion: </strong>Findings are inconclusive due to methodological differences. Comparison between studies was difficult due to differences in patients, form of engagements, and total duration of engagement of patients. Experiences of patient engagement mainly concern adherence to medical treatments or participation of \"expert patients\" in clinical trials, but very rarely the governance of R&I according to the dictates of Responsible Research and Innovation (RRI). More structuralized, well-conducted and comparable Randomized Controlled Trials (RCTs) are needed to be able to make evidence-based recommendations on how to increase effective patient engagement in research and innovation and assess the impact and (cost)-effectiveness.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/7a/bf/prom-13-259.PMC9758979.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10751276","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
Work Outcomes Among Patients with Light Chain (AL) Amyloidosis: Findings from Three Patient Cohorts. 轻链(AL)淀粉样变患者的工作结果:来自三个患者队列的研究结果
IF 2.1
Patient Related Outcome Measures Pub Date : 2021-12-15 eCollection Date: 2021-01-01 DOI: 10.2147/PROM.S337676
Avery A Rizio, Kristen L McCausland, Michelle K White, Tiffany P Quock
{"title":"Work Outcomes Among Patients with Light Chain (AL) Amyloidosis: Findings from Three Patient Cohorts.","authors":"Avery A Rizio,&nbsp;Kristen L McCausland,&nbsp;Michelle K White,&nbsp;Tiffany P Quock","doi":"10.2147/PROM.S337676","DOIUrl":"https://doi.org/10.2147/PROM.S337676","url":null,"abstract":"<p><strong>Background: </strong>Light chain (AL) amyloidosis is a rare and progressive disease that affects myriad organs and systems. Patients with cardiac involvement have the highest risk of death. This report compiles findings across three cohorts of patients with AL amyloidosis to understand patterns of employment and work impacts.</p><p><strong>Methods: </strong>Data came from three cohorts recruited through patient advocacy organizations in the US. Patients in Cohort 1 completed the SF-36v2<sup>®</sup> Health Survey (SF-36v2), the Work Productivity and Activity Impairments - Specific Health Problem (WPAI) questionnaire, and the 12-item Kansas City Cardiomyopathy Questionnaire (KCCQ-12). The relationship between work impacts (WPAI scores) and HRQoL (SF-36v2 scores) was investigated using multivariable logistic regression and summarized according to cardiac severity using New York Heart Association (NYHA) classes estimated from KCCQ-12 scores. Changes in employment, days of missed work, and long-term disability due to AL amyloidosis were summarized for patients diagnosed in the past 24 months and stratified by NYHA class (Cohort 2). Findings were contextualized using patient interviews (Cohort 3).</p><p><strong>Results: </strong>Work-related impacts, especially reduced productivity, were common among patients with AL amyloidosis. WPAI scores were significantly related to HRQoL (p<0.05 for all models). Among patients with cardiac involvement, the greatest degree of work impacts was observed for those in NYHA class 3 or 4. Changes in employment, missed work, and long-term disability were common among newly diagnosed patients, especially among those in NYHA class 3 or 4. Patient interviews supported the survey findings; patients described absences, reduced productivity at work, and loss of employment due to the disease and its treatment.</p><p><strong>Conclusion: </strong>Patients with AL amyloidosis, particularly those with more advanced disease, experience impacts across a range of employment-related outcomes. These findings highlight the need for more effective treatments and interventions which may improve functioning and patient outcomes, while reducing indirect costs associated with the disease.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2021-12-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/ab/6a/prom-12-339.PMC8685766.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39748059","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
Adverse Events and Their Contributors Among Older Adults During Skilled Nursing Stays for Rehabilitation: A Scoping Review. 老年人在康复护理期间的不良事件及其影响因素:范围综述。
IF 2.1
Patient Related Outcome Measures Pub Date : 2021-11-13 eCollection Date: 2021-01-01 DOI: 10.2147/PROM.S336784
Udoka Okpalauwaekwe, Huey-Ming Tzeng
{"title":"Adverse Events and Their Contributors Among Older Adults During Skilled Nursing Stays for Rehabilitation: A Scoping Review.","authors":"Udoka Okpalauwaekwe,&nbsp;Huey-Ming Tzeng","doi":"10.2147/PROM.S336784","DOIUrl":"https://doi.org/10.2147/PROM.S336784","url":null,"abstract":"<p><strong>Purpose: </strong>To identify factors that contribute to adverse events among older adults during short stays at skilled nursing facilities (SNFs) for rehabilitation (ie, up to 100 resident days). Adults aged 65 years and older are at serious risk for adverse events throughout their continuum of care. Over 33% of older adults admitted to SNFs experienced an adverse event (eg, falls) within the first 35 days of their stay.</p><p><strong>Design: </strong>A scoping review.</p><p><strong>Setting and participants: </strong>Older adults admitted for short stays in SNFs.</p><p><strong>Methods: </strong>Eligibility criteria were peer-reviewed original articles published between 1 January 2015 and 30 May 2021, written in English, and containing any of the following key terms and synonyms: \"skilled nursing facilities\", \"adverse events\", and \"older adults\". These terms were searched in PubMed, MEDLINE, CINAHL, EBSCOHost, and the ProQuest Nursing and Allied Health Database. We summarized the findings using the Joanna Briggs Institute and PRISMA-ScR reporting guidelines. We also used the Capability-Opportunity-Motivation-Behavior (COM-B) model of health behavioral change as a framework to guide the content, thematic, and descriptive analyses of the results.</p><p><strong>Results: </strong>Eleven articles were included in this scoping review. Intrinsic and extrinsic contributors to adverse events (ie, falls, medication errors, pressure ulcers, and acute infections) varied for each COM-B domain. The most frequently mentioned capacity-related intrinsic contributors to adverse events were frailty and reduced muscle strength due to advancing age. Inappropriate medication usage and polypharmacy were the most common capacity-related extrinsic factors. Opportunity-related extrinsic factors contributing to adverse events included environmental hazards, poor communication among SNF staff, lack of individualized resident safety plans, and overall poor care quality owing to racial bias and organizational and administrative issues.</p><p><strong>Conclusion: </strong>These findings shed light on areas that warrant further research and may aid in developing interventional strategies for adverse events during short SNF stays.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":null,"pages":null},"PeriodicalIF":2.1,"publicationDate":"2021-11-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/98/49/prom-12-323.PMC8599876.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39642687","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
Clinical Assessment of Dialysis Recovery Time and Symptom Burden: Impact of Switching Hemodialysis Therapy Mode. 透析恢复时间和症状负担的临床评估:转换血液透析治疗模式的影响。
IF 1.8
Patient Related Outcome Measures Pub Date : 2021-11-04 eCollection Date: 2021-01-01 DOI: 10.2147/PROM.S325016
Stephanie Bolton, Rachel Gair, Lars-Göran Nilsson, Michael Matthews, Louanne Stewart, Natasha McCullagh
{"title":"Clinical Assessment of Dialysis Recovery Time and Symptom Burden: Impact of Switching Hemodialysis Therapy Mode.","authors":"Stephanie Bolton, Rachel Gair, Lars-Göran Nilsson, Michael Matthews, Louanne Stewart, Natasha McCullagh","doi":"10.2147/PROM.S325016","DOIUrl":"10.2147/PROM.S325016","url":null,"abstract":"<p><strong>Introduction: </strong>Most people on hemodialysis (HD) report a high symptom burden. Fatigue and lack of energy are prominent, interfering with daily life and associated with poor outcome. Prolonged recovery time after each of the thrice weekly dialysis treatments is common. The impact of HD therapies, like expanded hemodialysis (HDx), on patient reported recovery time and symptom burden is unclear.</p><p><strong>Methods: </strong>A dialysis unit decided to perform regular assessments of patient-reported symptom burden, using the POS-S Renal Symptom questionnaire and the \"Recovery time from last dialysis session\" question as part of routine patient focused care. At a similar time, a clinical evidence-based decision was taken to switch the in-center dialysis cohort from regular high-flux dialysis membrane to medium cut-off (MCO) membrane, introducing HDx therapy.</p><p><strong>Results: </strong>Quarterly assessment of patient-reported symptom burden was well accepted. A sustained clinically relevant reduction in post-dialysis recovery time was observed following the therapy switch. In patients providing data up to 12 months (N = 58), median recovery time decreased from 210 min (IQR 7.5-600) to 60 min (0-210; p = 0.002) and 105 min (0-180; p = 0.001) at 6 and 12 months, respectively. Thirty-six percent of individuals reported a recovery time longer than 360 minutes at the initial assessment, which decreased to 9% at 12 months. The POS-S Renal total symptom score showed a decrease at 6 months but no difference from baseline at 12 months. The \"fatigue/lack of energy\" symptom showed a sustained improvement; the percentage of participants scoring its impact as \"severe\" or \"overwhelming\" decreased from 28% at baseline to 16% at 12 months. Changes in other symptoms were more variable.</p><p><strong>Conclusion: </strong>Regular assessment of patient reported symptoms is feasible in routine dialysis practice and can help in evaluating the impact of clinical interventions. Observations suggest that HDx therapy may reduce post-dialysis recovery time and improve perceived fatigue level.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":null,"pages":null},"PeriodicalIF":1.8,"publicationDate":"2021-11-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/57/5f/prom-12-315.PMC8575372.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39612663","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
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