Patient Related Outcome Measures最新文献

{"title":"Utilities Associated with the Treatment of Growth Hormone Deficiency (GHD): A Time Trade-off (TTO) Study in the UK and Canada.","authors":"Susan Kirsch, Gary Butler, Lasse de Fries Jensen, Anna Okkels, Cecilie Yssing, Jonas Håkan-Bloch","doi":"10.2147/PROM.S479705","DOIUrl":"10.2147/PROM.S479705","url":null,"abstract":"<p><strong>Purpose: </strong>Growth hormone deficiency (GHD) causes decreased growth rate in children, resulting in short stature in childhood and adulthood. Daily subcutaneous injections with growth hormone (GH) have been standard treatment. Newer weekly GH formulations now exist. This study estimates utilities associated with GHD treatment for both people with the disease and caregivers by employing time trade-off (TTO) methodology.</p><p><strong>Methods: </strong>Three online surveys were conducted amongst the general population in the UK and Canada. Based on a pilot, data collection was conducted in two surveys only (Survey A and Survey B). In Survey A, adults aged ≥18 years evaluated health states as if they were receiving injections themselves. In Survey B, adults with a child <15 years evaluated health states as if they were administering injections to a child. The surveys assessed device complexity, injection frequency, injection pain, needle visibility and storage possibilities.</p><p><strong>Results: </strong>2026 and 2028 respondents completed Survey A and Survey B, respectively. Of these, 1782 respondents and 1678 respondents were valid for inclusion. Avoiding weekly injection pain was associated with a significant utility gain of 0.030 (95% CI 0.026-0.035, p<0.001) in Survey A and 0.044 (95% CI 0.038-0.051, p<0.001) in Survey B. Additionally, less complex injection devices and lower injection frequencies had a significant impact in both Survey A (0.020, 95% CI 0.016-0.025, p<0.001; 0.009, 95% CI 0.005-0.014, p<0.001) and Survey B (0.008, 95% CI 0.002-0.014, p=0.006; 0.009, 95% CI 0.003-0.014, p=0.003).</p><p><strong>Conclusion: </strong>Several aspects are associated with a significant impact on utilities for people with GHD and potential caregivers. Treatment options without injection pain, a time-consuming and complex injection process and daily injections are expected to result in higher health-related quality of life. These results may inform future economic evaluations and treatment choices.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"16 ","pages":"9-21"},"PeriodicalIF":1.8,"publicationDate":"2025-01-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11731022/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142984572","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}

{"title":"\"Time to Be Young?\" - A Qualitative Study Exploring the Impact of Attending a Course for Young Carers Who Have a Parent with Dementia.","authors":"Celine Haaland-Johansen, Ingebjørg Haugen, Anne Marie Mork Rokstad","doi":"10.2147/PROM.S499063","DOIUrl":"10.2147/PROM.S499063","url":null,"abstract":"<p><strong>Purpose: </strong>Being a young carer of a parent with dementia can be challenging, with many carers undertaking various practical and caring tasks. The weekend course Time to be young? gathers young carers, aiming to support them to cope with their challenges in everyday life. The aim of this study was to explore their role as a caregiver and the experienced impact of the course on their strategies of coping in their everyday life.</p><p><strong>Participants and methods: </strong>The study had a qualitative descriptive design inspired by Lindseth and Norberg's phenomenological hermeneutical method, using individual semi-structured interviews for data collection. The participants were recruited from former participants of the course Time to be young?, and the final sample included eight participants.</p><p><strong>Results: </strong>Through the analysis, four main themes were identified: 1) Help to accept the situation, 2) A sense of community, 3) The need for information and 4) The need to live one's own life. The study found that attendance at Time to be young? for young adults having a parent with dementia affected their coping strategies in their situation as a young care.</p><p><strong>Conclusion: </strong>The study demonstrated the importance of courses like Time to be young?, and need for a meeting place, tailored information about dementia, and an opportunity to share and reflect upon their experiences as a young carer.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"16 ","pages":"1-8"},"PeriodicalIF":1.8,"publicationDate":"2025-01-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11725231/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142979539","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}

{"title":"The Role of Medical Helicopter and Ground Medical Crews in Polytrauma Management: An Evaluative Perspective.","authors":"Mihaela Anghele, Virginia Marina, Aurelian-Dumitrache Anghele, Cosmina-Alina Moscu, Liliana Dragomir","doi":"10.2147/PROM.S486167","DOIUrl":"10.2147/PROM.S486167","url":null,"abstract":"<p><strong>Introduction: </strong>Polytrauma remains a major global health challenge, with rapid intervention being critical for survival, especially during the \"Golden Hour\". This study examines the impact of Helicopter Emergency Medical Services (HEMS) on procedural care during the transfer of polytraumatized patients to urban hospitals in Romania.</p><p><strong>Methods: </strong>A retrospective cohort study was conducted at the County Emergency Hospital \"St. Ap. Andrei\" in Galați, covering January 2020 to October 2021. The study analyzed data from 89 patients transported by the Romania's Mobile Emergency Service for Resuscitation and Extrication (SMURD) Galați air unit. Key parameters included demographics, injury mechanism, vital statistics, and prehospital interventions. Statistical analyses were performed using SPSS, with significance set at p < 0.05.</p><p><strong>Results: </strong>Out of 89 patients (mean age 21.6 years, 80.3% male), trauma causes were primarily traffic accidents (34.8%) and falls (33.7%). A Glasgow Coma Scale (GCS) score ≤8 was noted in 28.1% of cases, with head trauma observed in 51.6% of patients. HEMS interventions frequently involved oxygen therapy (89.5%) and patient stabilization maneuvers, leading to a mortality rate of 6.7%. Notably, helicopter transport enabled efficient transfer and improved survival outcomes in this cohort.</p><p><strong>Discussion: </strong>HEMS demonstrated benefits in reducing intervention times and enhancing prehospital care quality for polytrauma patients, especially in hard-to-reach areas. The study aligns with global data on HEMS's role in trauma systems, underlining the importance of multidisciplinary collaboration and rapid transport.</p><p><strong>Conclusion: </strong>HEMS plays a crucial role in improving survival rates for severely injured patients through timely interventions and specialized care. Further research comparing HEMS and ground services could refine trauma management protocols in similar settings.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"15 ","pages":"315-328"},"PeriodicalIF":1.8,"publicationDate":"2024-12-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11681805/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142903389","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}

{"title":"Development and Validation of the Self-Management Questionnaire for Patients with Lower Extremity Arterial Disease Who Underwent Endovascular Revascularization.","authors":"Meihong Shi, Xi Yang, Pan Song, Huarong Xiong, Dan Wang, Xiaoyan Quan, Xinjun Liu, Xiuying Hu, Jia Zhou","doi":"10.2147/PROM.S493159","DOIUrl":"10.2147/PROM.S493159","url":null,"abstract":"<p><strong>Introduction: </strong>To develop and psychometrically validate the Self-management Questionnaire for Patients with Lower Extremity Arterial Disease Patients Who Underwent Endovascular Revascularization (LESQ).</p><p><strong>Methods: </strong>We developed the LESQ and validated it in a Chinese population. A three-round cross-sectional descriptive survey in six hospitals in China, involving samples of 271, 269, and 623 participants, respectively. The surveys were conducted between February 2021 to March 2022.</p><p><strong>Results: </strong>The final version of the LESQ, with 22 items, was divided into three domains using exploratory factor analysis: medical management, rehabilitation exercise management, and daily life management. The questionnaire had good internal consistency reliability, with a Cronbach's α of 0.953 and good retest reliability, with the coefficients of 0.917, respectively. The content validity of the LESQ was 0.939. The three domains of the questionnaire were confirmed by confirmatory factor analysis. The optimal cut-off points were 52 and 70, respectively, using latent profile analysis.</p><p><strong>Discussion: </strong>The LESQ is a new self-report questionnaire for measuring self-management ability with good reliability and validity through validation.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"15 ","pages":"301-314"},"PeriodicalIF":1.8,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11669539/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142896518","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}

{"title":"Patients with Chronic Kidney Disease: Background Factors Associated with Experienced Health Status and Life Satisfaction.","authors":"Mari Pesonen, Aino Vesikansa, Juha Mehtälä, Maria Grönman, Maarit Heinimäki, Sari Högström, Päivi Schenk","doi":"10.2147/PROM.S475723","DOIUrl":"10.2147/PROM.S475723","url":null,"abstract":"<p><strong>Purpose: </strong>The prevalence of chronic kidney disease (CKD) is increasing and CKD often goes undiagnosed and untreated until its later stages when irreversible damage has occurred. Patients with CKD have been reported to have lower quality of life than the general population, but the patient-reported outcome data on CKD patients in Finland are limited.</p><p><strong>Patients and methods: </strong>The primary outcome of this structural, multiple-choice survey study was to assess life satisfaction and experienced health status in Finnish patients with CKD. The results were presented as numbers (n) and percentages (%). The secondary outcome was to identify patient groups using the K-means clustering method based on preselected response variables and to assess the associated background factors.</p><p><strong>Results: </strong>In total, 558 patients with CKD responded to the electronic survey. Of the 395 patients who completed the whole survey, 39.7% reported their health status as good, pretty good, or excellent, and 59.9% were fairly or very satisfied with their life. Two clusters of patients could be identified based on their health status and life satisfaction: patients with (1) poorer or (2) better well-being. Patients with poorer well-being were more likely to have at least 3 comorbidities (66.8% vs 44.3%) and lack follow-up visits entirely (10.5% vs 1.9%), compared with patients with better well-being. The patients with poorer well-being were less often knowledgeable about the disease, its causes (35.5% vs 48.1%), and its care (30.7% vs 20.3%) than patients with better well-being, and they showed weaker adherence to lifestyle interventions such as following dietary instructions (30.3% vs 40.5%).</p><p><strong>Conclusion: </strong>Screening for CKD to enable early diagnosis, early commitment to treatment, and empowering the patient by providing education are key for improvement of health and life satisfaction in patients with CKD. Therefore, resources should be allocated to these measures of action.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"15 ","pages":"287-300"},"PeriodicalIF":1.8,"publicationDate":"2024-11-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11611702/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142770531","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}

{"title":"Practices for Reporting Scale Structure and Summarizing Scores in Studies Using FAMCARE Scale to Assess Caregiver Satisfaction with Cancer Care: A Scoping Review.","authors":"Kristin Vassbotn Guldhav, John Roger Andersen, Kari Eldal, Tonje Lundeby, Pål Andre Hegland","doi":"10.2147/PROM.S479195","DOIUrl":"10.2147/PROM.S479195","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"15 ","pages":"271-286"},"PeriodicalIF":1.8,"publicationDate":"2024-11-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11556242/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142625710","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}

{"title":"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.","authors":"Aude Roborel de Climens, Amy Findley, Denise P Bury, Keri J S Brady, Matthew Reaney, Adam Gater","doi":"10.2147/PROM.S468623","DOIUrl":"https://doi.org/10.2147/PROM.S468623","url":null,"abstract":"<p><strong>Purpose: </strong>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).</p><p><strong>Patients and methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"15 ","pages":"255-269"},"PeriodicalIF":1.8,"publicationDate":"2024-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11468370/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142471864","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}

{"title":"Exploring Barriers to Effective COVID-19 Risk Mitigation, Recovery, and Chronic Disease Self-Management: A Qualitative Multilevel Perspective.","authors":"Gayenell S Magwood, Charles Ellis, Chanita Hughes Halbert, Ebony Allen Toussaint, Jewel Scott, Lynne S Nemeth","doi":"10.2147/PROM.S467743","DOIUrl":"10.2147/PROM.S467743","url":null,"abstract":"<p><strong>Introduction: </strong>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.</p><p><strong>Material and methods: </strong>A purposive sample of interviews (n=9) and focus groups (n=10) were used to collect data regarding knowledge of barriers to effective COVID-19 risk mitigation, recovery, and chronic disease self-management. This included nurses, physicians, COVID-19 survivors and their carepartners, public health, and community leaders connected with the healthcare systems in rural counties of South Carolina.</p><p><strong>Results: </strong>Five major themes were identified across the subgroups. The themes: The COVID-19 Illness Trajectory Added Major Health Challenges and Stressors, Access to Care Is Lacking, Support is Needed for COVID-19 Survivors and Care Partners, Support Must be Distributed Equitably, and Racism and Structural Issues Affect Stress reflect the strengths, opportunities, and inequities perceived within these groups.</p><p><strong>Conclusion: </strong>This research is the first qualitative study focused on COVID-19 survivor-carepartner dyads that consider the intersectionality of race/ ethnicity, geography, and health that is known to occur when engaging healthcare systems. The themes illustrate the need for infectious disease prevention at all socioecological levels: structural/ systemic, community, organizational/ institutional, interpersonal, and individual.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"15 ","pages":"241-253"},"PeriodicalIF":1.8,"publicationDate":"2024-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11416793/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142292810","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}

{"title":"Ultra-Low Frequency Transmitted Ultrasound Breast Imaging vs DBT (Digital Breast Tomosynthesis): A Patient-Reported Outcome Study.","authors":"Elaine Iuanow, Emily A Pickup, Bilal Malik, Julie Doehrmann, Fernando A Huyke, Rachel Ducker, John Klock","doi":"10.2147/PROM.S423380","DOIUrl":"10.2147/PROM.S423380","url":null,"abstract":"<p><strong>Purpose: </strong>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.</p><p><strong>Participants and methods: </strong>Pre- and post-menopausal women who qualified for breast cancer screening were enrolled in a prospective trial of Quantitative Transmission (QT Scan) vs traditional mammography via Digital Breast Tomosynthesis (DBT) Clinical Trials.gov NCT03052166. These women completed questionnaires to assess their experiences with QT Scan and DBT. Associations between QT Scan or DBT and differences in PRO scores were examined.</p><p><strong>Results: </strong>A total of 430 subjects completed the PRO instrument analyzed. A total of 36 questions were asked, 34 were paired for both QT and DBT and two were asked regarding exclusively the QT Scan. Physical discomfort, perceptions of safety and low efficacy, false-positive results and additional out-of-pocket expenses were concerns identified as highest risk for opting out of screening mammography (differences between 2.1 and 2.9 indicate significant differences between means and standard deviations using the Cohen's d statistic). Student's <i>T</i>-test shows a significance level of <10 ^-10. Statistically significant differences in PROs between QT Scan and DBT were observed by 14 of the 17 paired experience questions (p<0.001).</p><p><strong>Conclusion: </strong>Significant differences in PROs were found between QT scan and DBT, indicating women have significantly more negative experiences with traditional mammography via DBT and are less inclined to undergo screening mammography. Identification of PRO differences could be used to help identify a more desirable breast cancer screening modality.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"15 ","pages":"219-240"},"PeriodicalIF":1.8,"publicationDate":"2024-08-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11366257/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142110580","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}

{"title":"Systematic Literature Review of Studies Reporting Measures of Functional Outcome or Quality of Life in People with Negative Symptoms of Schizophrenia.","authors":"Dusica Hadzi Boskovic, Jayne Smith-Palmer, Johannes Pöhlmann, Richard F Pollock, Steve Hwang, David Bruhn","doi":"10.2147/PROM.S454845","DOIUrl":"10.2147/PROM.S454845","url":null,"abstract":"<p><strong>Aim: </strong>Negative symptoms of schizophrenia (NSS) have been linked with poor functional outcomes. A literature review was performed to identify instruments used to assess functional outcomes and quality of life in clinical trials and observational studies conducted in groups of people with NSS.</p><p><strong>Methods: </strong>Literature search strings were designed using Medical Subject Headings combined with free-text terms and searches were performed using the PubMed, Embase and the Cochrane Library databases. For inclusion, articles were required to be published as full-text articles, in English, over the period 2011-2021, include at least one group or treatment arm of people with NSS and report either functional outcomes or quality of life (QoL).</p><p><strong>Results: </strong>Literature searches identified a total of 3,268 unique hits. After two rounds of screening, 37 publications (covering 35 individual studies) were included in the review. A total of fourteen different instruments were used to assess functional outcomes and eleven different instruments were used to assess QoL. In studies in people with NSS, the most frequently used functional outcome measures were the Personal and Social Performance scale and the Global Assessment of Functioning. The most frequently used QoL instruments included the Manchester Short Assessment of Quality of Life, the Heinrich Carpenter Quality of Life Scale, the Schizophrenia Quality of Life Scale and the EQ-5D.</p><p><strong>Conclusion: </strong>A large number of measures have been used to assess functional outcomes and QoL in people with NSS, these include both generic and condition-specific as well as both interviewer-administered and self-reported instruments.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"15 ","pages":"199-217"},"PeriodicalIF":1.8,"publicationDate":"2024-06-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11192194/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141444105","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}