Patient Related Outcome Measures

Background: The Ascites Impact Measure (AIM) was developed to record patients' daily experiences of symptoms that trigger a request for a paracentesis. Methods: Development of the AIM followed a rigorous step-wise approach, including a review of the literature, expert opinions, and qualitative research involving patients who experience symptomatic malignant ascites. The AIM's measurement properties were assessed using data from two international trials, including 59 ovarian cancer patients with symptomatic malignant ascites. Results: Following the literature review and expert discussions to develop the conceptual model, ten patients with symptomatic malignant ascites were interviewed in the item elicitation phase, resulting in a draft questionnaire with four questions. Validation analyses consisted of 59 patients pooled from two international trials. Inter-items correlations for the AIM were good (r > 0.60), except for the Pain item. Internal consistency reliability (α = 0.89) improved after removing the Pain item from the Total Symptom score (TSS). Test-retest reliability was sufficient. Scores significantly improved after paracentesis except for the Pain item. Preliminary estimates indicate that a two-point improvement on the three-item TSS (without the Abdominal Pain item) could be interpreted as clinically meaningful. Conclusion: The Abdominal Pain item appears to behave differently than the other three items, and could be more related to cancer. While the validity of the AIM TSS (four-item) is acceptable, removing the Pain item from the TSS scoring algorithm demonstrated better construct validity. In addition, test-retest reliability and responsiveness were found to be similar to the results for the four-item AIM TSS. The Pain item should be used as a supplemental item to the three-item AIM TSS, as it provides additional information about the underlying cancer state. Keywords: ascites impact measure, symptoms, ovarian cancer, paracentesis

Bruce Crawford

None Piault

None Gotlieb

None Joulain

Development and validation of the self-completed ascites impact measure to understand patient motivation for requesting a paracentesis

Mari Pesonen

Aino Vesikansa

Juha Mehtälä

Maria Grönman

Maarit Heinimäki

Sari Högström

Päivi Schenk

Patients with Chronic Kidney Disease: Background Factors Associated with Experienced Health Status and Life Satisfaction

慢性肾脏病患者：与健康状况和生活满意度相关的背景因素

Background: Satisfaction with care is a concept quantified through diverse measurement tools. However, studies have indicated that measuring satisfaction is challenging due to the construct's multidimensional expression. Thus, obtaining valid results requires careful consideration of the construct's nature and measurement methods. Purpose: The primary aim of this study was to examine how studies involving cancer caregivers have addressed the dimensionality of the construct when using satisfaction with care as an outcome, and whether this is reflected in the score reporting practices. We chose to investigate this by conducting a scoping review of the measurement tool Family Satisfaction with End-of-Life Care Scale (FAMCARE Scale), where scores can be reported as the mean of overall score, subscale scores and single-item scores. Methods: This scoping review consisted of systematic searches using Medline, CINAHL, Embase, PsycInfo, Cochrane Library, and Epistemonikos. Two researchers used the Rayyan Qatar Computing Research Institute system to perform a blinded screening process. We extracted information on study design, purpose, evaluating of structural validity, variations in the type of scores reported, and justification for choosing the type(s) of scores that were analyzed. Results: Twenty-three studies were included in the review, and their designs and reporting practices of score type varied substantially. Five studies reported analyses to test the scale's structural validity. Ten studies provided a justification for their choice of reporting method. The most common reporting practice found was using mean of overall scores, present in 20 of the included studies. Twelve studies reported mean of subscale scores, and ten reported single-item mean scores. Conclusion: We found substantial variability in score reporting practices, highlighting the need for a more in-depth understanding and reflection on the multidimensional nature of caregiver satisfaction. Keywords: cancer caregiver, family caregiver, family satisfaction, neoplasm, palliative care

Kristin Guldhav

John Andersen

Kari Eldal

Tonje Lundeby

Pål Hegland

Practices for Reporting Scale Structure and Summarizing Scores in Studies Using FAMCARE Scale to Assess Caregiver Satisfaction with Cancer Care: A Scoping Review

使用FAMCARE量表评估癌症护理者满意度研究中报告量表结构和总结分数的实践：范围综述

Background: 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. Aim: To review existing scientific evidence regarding the engagement of patients with brain disorders in research and innovation. Methods: Studies were retrieved from several bibliographic databases (publication date between January 2016 and April 2019) with pre-specified selection criteria. Results: 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. Discussion: 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. Keywords: systematic review, patient engagement, responsible research and innovation, brain disorders, patient reported outcomes

Deborah Bertorello

Giampaolo Brichetto

Frans Folkvord

Alexandra Theben

Paola Zaratin

A Systematic Review of Patient Engagement Experiences in Brain Disorders

脑部疾病患者参与体验的系统综述

Abstract: Systemic lupus erythematosus (SLE) is a chronic, autoimmune disease, characterised by a relapsing-remitting pattern of inflammatory activity, with each relapse contributing to irreversible end-organ damage with detrimental effects on patients' course, adding up to morbidity burden and shortening life-length. Along with several other demographic, socioeconomic, and life-style factors, high inflammatory activity and accrued organ damage have been coupled with adverse health-related quality of life (HRQoL) within physical, mental, and psychosocial aspects. The management of SLE has improved substantially during the last decades, owing to a technological explosion that has advanced drug development towards more targeted options. Being the first drug to be approved for SLE in more than half a century and the first in history biological agent for SLE, the introduction in 2011 of the monoclonal antibody belimumab that specifically binds to the soluble counterpart of B cell activating factor (BAFF) was a breakthrough in SLE drug development. The efficacy and favourable safety profile of belimumab has been demonstrated across several clinical trials and observational studies. Herein, we reviewed the literature and provide a summary on the effects of belimumab on SLE patients' HRQoL based on 23 studies. Belimumab has been shown to induce clinically important improvements in physical aspects of HRQoL and in fatigue, the latter being a common and major complaint within the SLE population. People with SLE overall benefit more from belimumab within physical compared with mental aspects of HRQoL. However, despite improvements of clinical and immunological features upon therapy with belimumab, HRQoL perception remains unsatisfactory for a substantial percentage of the patients. Finally, our review made apparent an urgent need for optimisation of the use of patient-reported outcome measures, both in research and clinical practice. Keywords: systemic lupus erythematosus, health-related quality of life, fatigue, patient-reported outcomes, belimumab, monoclonal antibodies

Alvaro Gomez

Yvonne Enman

Ioannis Parodis

Impact of Belimumab on Patient-Reported Outcomes in Systemic Lupus Erythematosus: Insights from Clinical Trials and Real-World Evidence

贝利尤单抗对系统性红斑狼疮患者报告结局的影响：来自临床试验和真实世界证据的见解

Purpose: Quantifying patient-perceived benefits and disadvantages of treatments in a real-world setting is increasingly important in healthcare decision-making. The Patient's Qualitative Assessment of Treatment (PQAT) assesses patient-perceived benefits and disadvantages of treatment, and associated trade-offs potentially influencing patients' willingness to continue treatment. It has then been modified to capture patients' perceived magnitude of benefits and disadvantages of treatment quantitatively, as well as qualitatively (PQATv2). However, the PQAT and the PQATv2 were designed for use and validated in a clinical trial setting. The objective of this study was to adapt and test the content validity of a version of the PQATv2 for use in real-world settings (PQAT-RW). Patients and Methods: The PQATv2 was adapted for use in real-world settings (PQAT-RW), and its content was validated in 16 patients with varied chronic medical conditions and medication regimens via semi-structured qualitative interviews. Results: All participants reported that the PQAT-RW was "easy to understand". The majority (n = 11/16) reported that the items covered all important aspects of their treatment experience, and that no items needed to be removed or added to the instrument. Analysis of free-text responses identified eight global concepts considered by participants when evaluating the benefits and disadvantages of treatment: treatment effectiveness, side effects and method of administration were most frequently considered (as both benefits and disadvantages), followed by frequency of administration, financial considerations, storage, packaging and drug preparation. Conclusion: The results of this study support the content validity of the PQAT-RW. They also demonstrate that using qualitative responses to contextualize quantitative responses provides unique insight into diverse and individualized patient-perceived benefits and disadvantages, and their relative importance, in real-world settings. Keywords: patient-reported outcome measure, qualitative research, real-world evidence, treatment experience

Aude Roborel de Climens

Amy Findley

Denise Bury

Keri Brady

Matthew Reaney

Adam Gater

Development and Content Validation of the Patient’s Qualitative Assessment of Treatment – Real-World (PQAT-RW): An Instrument to Evaluate Benefits and Disadvantages of Treatments in Real-World Settings

患者定性评估治疗-现实世界（PQAT-RW）的开发与内容验证：一种评估现实世界环境中治疗优缺点的工具

Many research activities have focused on SARS-CoV-2 infection and subsequent COVID-19 respiratory illness during the pandemic. However, significant racial inequities emerged months after the COVID-19 pandemic began. The similarity between racial/ ethnic disparities in COVID-19 and those for other diseases raised awareness about the context for risk exposure and healthcare access. The purpose of this study is to examine social and structural determinants of health among COVID-19 survivors, carepartners, and the perspectives of healthcare stakeholders who experienced disruption during the early pandemic.

Gayenell S Magwood

Charles Ellis

Chanita Hughes Halbert

Ebony Allen Toussaint

Jewel Scott

Lynne S Nemeth

Exploring Barriers to Effective COVID-19 Risk Mitigation, Recovery, and Chronic Disease Self-Management: A Qualitative Multilevel Perspective

探索有效新冠风险缓解、恢复及慢性病自我管理的障碍：一种定性多层次视角

Breast cancer screening remains a challenge in the United States. Many women do not get a mammogram because of pain associated with the exam, radiation exposure, false-positive results, and additional costs. Others who may benefit from annual screening do not qualify because of young age and radiation risk. We hypothesize that a novel volumetric transmitted breast ultrasound, Quantitative Transmission (QT) Scan may encourage more women to have annual breast cancer screening. Assessing results from patient-reported outcomes (PROs) may predict the value of newer, more desirable screening technologies.

Elaine Iuanow

Emily Pickup

Bilal Malik

Julie Doehrmann

Fernando Huyke

Rachel Ducker

John Klock

Ultra-Low Frequency Transmitted Ultrasound Breast Imaging vs DBT (Digital Breast Tomosynthesis): A Patient-Reported Outcome Study

超低频透射超声乳腺成像与DBT（数字乳腺断层合成）：一项患者报告结局研究

Abbreviation	Patient Relat. Outcome Meas.
Journal Impact	1.96
Quartiles(Global)	HEALTH CARE SCIENCES & SERVICES(Q3)

Publication Information	Publisher: Informa UK Limited，Publishing cycle: ，Journal Type: journal，Open Access Journals: Yes
Basic data	Year of publication: 2010，Proportion of original research papers: 66.67%，Self Citation Rate:0.00%， Gold OA Rate: 100.00%
Journal Fees	$2990Details
Average review cycle	网友分享经验：16 Weeks

Patient Related Outcome Measures

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Development and validation of the self-completed ascites impact measure to understand patient motivation for requesting a paracentesis

Patients with Chronic Kidney Disease: Background Factors Associated with Experienced Health Status and Life Satisfaction

Practices for Reporting Scale Structure and Summarizing Scores in Studies Using FAMCARE Scale to Assess Caregiver Satisfaction with Cancer Care: A Scoping Review

A Systematic Review of Patient Engagement Experiences in Brain Disorders

Impact of Belimumab on Patient-Reported Outcomes in Systemic Lupus Erythematosus: Insights from Clinical Trials and Real-World Evidence

Patients with Chronic Kidney Disease: Background Factors Associated with Experienced Health Status and Life Satisfaction

Practices for Reporting Scale Structure and Summarizing Scores in Studies Using FAMCARE Scale to Assess Caregiver Satisfaction with Cancer Care: A Scoping Review

Development and Content Validation of the Patient’s Qualitative Assessment of Treatment – Real-World (PQAT-RW): An Instrument to Evaluate Benefits and Disadvantages of Treatments in Real-World Settings

Exploring Barriers to Effective COVID-19 Risk Mitigation, Recovery, and Chronic Disease Self-Management: A Qualitative Multilevel Perspective

Ultra-Low Frequency Transmitted Ultrasound Breast Imaging vs DBT (Digital Breast Tomosynthesis): A Patient-Reported Outcome Study