Patient Related Outcome Measures最新文献

{"title":"Health Workers' Practice Towards Smoking Cessation Intervention Based on 5A's Model and Associated Factors in Public Hospitals, Hadiya Zone, Southern Ethiopia.","authors":"Temesgen Tamirat","doi":"10.2147/PROM.S322049","DOIUrl":"https://doi.org/10.2147/PROM.S322049","url":null,"abstract":"<p><strong>Background: </strong>The tobacco pandemic is one of the world's most serious public health concerns, killing more than 8 million lives per year. The worst burden is in low- and middle-income countries. Unless appropriate action is taken, the burden may worsen. Health workers are among the actors to implement smoke cessation interventions. However, the level of intervention practices towards smoke cessation was not defined.</p><p><strong>Objective: </strong>To determine health workers' practice towards smoke cessation interventions based on 5A's model and associated factors in public hospitals.</p><p><strong>Methods: </strong>Facility-based cross-sectional design was used. All public hospitals found in the Hadiya zone were included in the study. From each public hospital, representative number of health workers, who fulfil inclusion criteria, were included in the study. A total of 323 sample size of health workers were used. A self-administered questionnaire was employed to collect data. Both descriptive and advanced analyses were performed using SPSS software version 20.0. In bivariable analysis, variables with p-value < 0.25 were considered for multivariable analysis. Finally, odds ratio with 95% CI and p-value < 0.05 were used to declare factors as significantly associated with the outcome variable.</p><p><strong>Results: </strong>About 97% of health care workers had poor practice on smoking cessation interventions. About 7.4% (23) health workers reported as they were current smokers. Moreover, only 28% of health workers asked their patients about smoking status. Being females, having <10 years of service, training and having good knowledge was significantly associated with the outcome variable.</p><p><strong>Conclusion: </strong>Majority of the healthcare workers surveyed did not provide smoking cessation interventions. Identified statistically significant factors with the practice of smoke cessation interventions in this study were sex, knowledge, training and service years. Therefore, strategies should be designed and implemented to improve and equip the health workers towards practising of smoke cessation interventions by instituting smoke cessation programs.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"12 ","pages":"291-298"},"PeriodicalIF":2.1,"publicationDate":"2021-09-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/15/a9/prom-12-291.PMC8453442.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39443497","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":"Health-Related Quality of Life Among Heart Failure Patients Attending an Outpatient Clinic in the University of Gondar Comprehensive Specialized Hospital Northwest, Ethiopia, 2020: Using Structural Equation Modeling Approach.","authors":"Gebrekidan Ewnetu Tarekegn,&nbsp;Lemma Derseh Gezie,&nbsp;Tilahun Yemanu Birhan,&nbsp;Frew Ewnetu","doi":"10.2147/PROM.S322421","DOIUrl":"https://doi.org/10.2147/PROM.S322421","url":null,"abstract":"<p><strong>Background: </strong>Chronic heart failure is one of the most important public health concerns in the industrialized and developing world having increasing prevalence. Measuring quality of life using rigorous statistical methods may be helpful to provide input for decision-makers and the development of guidelines. This study aimed to assess health-related quality of life and associated factors among heart failure patients attending the University of Gondar Specialized Hospital.</p><p><strong>Methods: </strong>A cross-sectional study was employed to select 469 heart failure patients who have follow-up at the University of Gondar Specialized Hospital consecutively from March 01 to 30, 2020. Data were entered to Epi Info 7 and exported to STATA version 15 for further statistical analysis. The quality-of-life domains were measured with World Health Organization Quality of Life BREF. Structural equation modeling was employed to estimate the relationships among exogenous, mediating, and endogenous variables simultaneously.</p><p><strong>Results: </strong>Chronic heart failure patients had a significantly lower mean score in physical health domain (31.70 mean score), environmental health domain (38.35 mean score), and in overall quality of life domain (41.61 mean score) moderate in social relation domain (46.22 mean score), and in psychological health domain (50.21 mean score) of health-related quality of life (p-value <0.0001). Age had a direct positive effect on health-related quality of life. Residency also had a direct negative effect on both physical and environmental health-related quality of life domain. Duration of heart failure had a direct negative effect on psychological health.</p><p><strong>Conclusion: </strong>The finding of this study indicated that poor health-related quality of life in the physical health domain, moderately poor in overall health-related quality of life, and moderate health-related quality of life in the psychological health domain among Chronic heart failure patients. Age, residence, marital status, income, and duration of HF were significantly associated factors for quality of life among HF patients.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"12 ","pages":"279-290"},"PeriodicalIF":2.1,"publicationDate":"2021-08-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/99/49/prom-12-279.PMC8409769.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39403009","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":"Incidence and Risk Factors of Emergence Delirium After Anesthesia in Elderly Patients at a Postanesthesia Care Unit in Ethiopia: Prospective Observational Study [Removal].","authors":"","doi":"10.2147/PROM.S330479","DOIUrl":"https://doi.org/10.2147/PROM.S330479","url":null,"abstract":"<p><p>[This retracts the article DOI: 10.2147/PROM.S297871.].</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"12 ","pages":"277"},"PeriodicalIF":2.1,"publicationDate":"2021-08-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/d0/39/prom-12-277.PMC8383473.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39356004","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":"Pharmacotherapy Pattern and Treatment Outcomes of Stroke Patients Admitted to Jimma University Medical Center, Ethiopia.","authors":"Nigatu Beyene,&nbsp;Korinan Fanta,&nbsp;Ramanjireddy Tatiparthi","doi":"10.2147/PROM.S307291","DOIUrl":"https://doi.org/10.2147/PROM.S307291","url":null,"abstract":"<p><strong>Background: </strong>Despite the fact that stroke has been reported as one of the top three leading causes of death and morbidity in Ethiopia, there are limited data regarding the management of stroke and clinical outcomes. Hence, the present study aimed to evaluate the pharmacotherapy of stroke and factors associated with poor treatment outcomes.</p><p><strong>Methods: </strong>A retrospective cross-sectional study was conducted at Jimma University Medical Center (JUMC) among adult stroke patients managed from 2014 to 2017. Clinical characteristics, treatment, and outcomes data were analyzed by using SPSS version 21. Multivariable logistic regression was performed to identify the predictors of poor treatment outcomes. Two-sided P < 0.05 was accepted as statistically significant.</p><p><strong>Results: </strong>A total of 153 illegible patient cases were included in this study. The majority, 111 (72.5%), were male and the mean age of the patients was 57±13.7 years. Among 153 stroke patients, 112 (73.2%) patients presented with ischemic stroke. Aspirin and statins (78.6%) were the most commonly used treatment among ischemic stroke patients, whereas enalapril was used in about (43%) of stroke patients to treat high blood pressure. About 61 (40%) stroke patients had poor treatment outcomes; of this, 36 (23.5%) died in hospital. Older age (AOR = 1.034; 95% CI: 1.003-1.069), history of heart failure (AOR = 4.26; 95% CI: 1.58-11.48), loss of consciousness diabetes (AOR = 3.05 95% CI: 1.25-7.44), and aspiration pneumonia (AOR = 5.94; 95% CI: 2.46-14.32) were significantly associated with poor treatment outcomes.</p><p><strong>Conclusion: </strong>Overall, treatment of stroke patients was sub-optimal and almost half of the patients had poor treatment outcomes. Availing of thrombolytic therapy, devising appropriate preventive measures of risk factors (hypertension), and decreasing preventable complication such as aspiration pneumonia could improve patient outcomes.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"12 ","pages":"267-275"},"PeriodicalIF":2.1,"publicationDate":"2021-08-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/53/72/prom-12-267.PMC8357615.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39311862","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":"Monitoring Severity of Respiratory Syncytial Virus (RSV) in Infants and Young Children Using the Pediatric RSV Electronic Severity and Outcome Rating System (PRESORS): Results of Initial Quantitative Validation.","authors":"Christine de la Loge,&nbsp;Fatoumata Fofana,&nbsp;Paul Williams,&nbsp;Sarah Rusch,&nbsp;Marita Stevens,&nbsp;Jane Scott","doi":"10.2147/PROM.S298736","DOIUrl":"https://doi.org/10.2147/PROM.S298736","url":null,"abstract":"<p><strong>Purpose: </strong>PRESORS ClinRO completed by clinicians and ObsRO completed by caregivers were developed to characterize the clinical course of respiratory syncytial virus (RSV) infection. This study describes preliminary analysis of PRESORS' measurement properties using clinical trial data.</p><p><strong>Patients and methods: </strong>PRESORS ClinRO and ObsRO data were collected in a 28-day randomized, double-blind, Phase 1b trial of JNJ-53718678 or placebo in infants and children ≤24 months of age treated for RSV infection in hospitals. PRESORS data were scored and key psychometric properties of scores were evaluated, including ability to discriminate between known groups and to detect change over time. Time to resolution of RSV signs was explored using two responder definitions.</p><p><strong>Results: </strong>Daily completion rates for PRESORS ClinRO and ObsRO were high for the 44 children in the study (median: 100% and 93%, respectively). Large floor effects were observed at baseline for signs of severe RSV infection that were either absent (cyanosis, fever, apnea) or rarely reported (reduced urination/dehydration, vomiting). Implausible ObsRO ratings suggested some caregivers could not accurately measure heart rate. Known-group validity was confirmed: children in poor health based on baseline ClinRO had mean baseline composite scores that were significantly worse for both ObsRO (p=0.001) and ClinRO (p<0.001) compared to those with better overall health. ObsRO (p=0.009) and ClinRO (p<0.001) composite scores were responsive to change in overall health status from baseline to Day 3. Mean scores for RSV sign dimensions decreased rapidly from baseline to Day 7 except for coughing and sleep ratings by caregivers. Time to recovery varied greatly depending on definitions used.</p><p><strong>Conclusion: </strong>PRESORS ClinRO and ObsRO can inform endpoints and enable monitoring the clinical course of RSV in pediatric trials. Improved alignment between ClinRO and ObsRO and revisions ensuring caregivers can assess all signs will be addressed in revised PRESORS.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"12 ","pages":"247-265"},"PeriodicalIF":2.1,"publicationDate":"2021-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/60/87/prom-12-247.PMC8315813.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39257225","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":"Eliciting Health State Utilities for Aromatic L-Amino Acid Decarboxylase (AADC) Deficiency: A Vignette Study in France.","authors":"Adam B Smith, Andria Hanbury, Igor Beitia Ortiz de Zarate, Florence Hammes, Gerard de Pouvourville, Katharina Buesch","doi":"10.2147/PROM.S306228","DOIUrl":"10.2147/PROM.S306228","url":null,"abstract":"<p><strong>Purpose: </strong>Health-related quality of life (HRQoL) is difficult to measure in rare diseases, especially in paediatric populations, yet capturing HRQoL is critical to evaluating treatment, including the cost-effectiveness of treatments. Given the ultra-rare nature of AADC deficiency indirect elicitation of HRQoL data through proxy caregiver/parent ratings is not feasible. In these circumstances, HRQoL data may be derived through vignette studies using the general population. The aim of the study was to generate health utility values specific for France for AADC deficiency using vignettes.</p><p><strong>Methods: </strong>The study was completed online by panel participants from a French representative sample. Five health state vignettes, reflecting key milestones in the eladocagene exuparvovec clinical trials and economic model, were presented to the participants: \"bedridden\", \"head control\", \"sitting unsupported\", \"standing with assistance\" and \"walking with assistance\". The vignettes had been previously developed with input from parents of patients with AADC deficiency, patients and expert opinion. Participants also completed the Health Utilities Index-3 for the \"bedridden\" health state.</p><p><strong>Results: </strong>A total of 1001 participants (51% females; mean age 46 years) completed the vignettes. Utilities increased linearly as the health state improved for both the time trade-off (TTO): 0.47 (standard deviation, SD 0.36) to 0.54 (SD 0.36) and standard gamble (SG): 0.61 (SD 0.29) to 0.67 (SD 0.27). A significant minority had incongruent responses (high utilities for the bedridden compared to walking health states) for the vignette (27%). When these were removed, the TTO health utilities (N=729) ranged from 0.39 (SD 0.36) to 0.56 (SD 0.38) and 0.61 (SD 0.30) to 0.69 (SD 0.27) for the SG.</p><p><strong>Conclusion: </strong>Health utilities were derived for AADC deficiency which will be used for a cost-effectiveness model of an AADC deficiency treatment.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"12 ","pages":"237-246"},"PeriodicalIF":2.1,"publicationDate":"2021-07-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/2f/16/prom-12-237.PMC8285298.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39203179","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":"Indications, Outcome and Risk Factors of Cesarean Delivery Among Pregnant Women Utilizing Delivery Services at Selected Public Health Institutions, Oromia Region, South West Ethiopia.","authors":"Belete G/Mariam,&nbsp;Temesgen Tilahun,&nbsp;Elias Merdassa,&nbsp;Desalew Tesema","doi":"10.2147/PROM.S304672","DOIUrl":"https://doi.org/10.2147/PROM.S304672","url":null,"abstract":"<p><strong>Background: </strong>Approximately 10% of deliveries are considered as high risk, which may require cesarean section. Besides, a rise in cesarean section delivery is a real public health concern; cesareans are costly and carry 8-12 and 8 times higher feto-maternal morbidity and mortality, respectively, as compared to vaginal delivery. Like in other countries where unnecessary cesarean delivery is performed, it is also rising in our country, posing potential risk to the mothers and their newborns.</p><p><strong>Objective: </strong>To assess the indications and outcome of cesarean section delivery among pregnant women utilizing delivery services in selected hospitals.</p><p><strong>Methods: </strong>A case-control study design was used among 488 randomly selected pregnant women attending delivery services in Bedelle and Mettu-Kharl Hospitals. Data were collected by interviewer-administered questionnaire and entered into EPI-data version 3.1 and exported to SPSS version 20 for cleaning and analyses. Binary logistic regression analysis was used to control for possible confounders. Association was declared at 95% CI and <i>P</i>-value <0.05 to assess the association between dependent and independent variables. Variables with <i>P</i>-values <0.05 at bivariate analysis were entered to final logistic regression model.</p><p><strong>Results: </strong>Nearly 30% and 24.6% of fetuses had been exposed to unfavorable outcome among those delivered following cesarean and vaginal delivery, respectively. The mean age of study participants was 25.79 (SD 6.76) for mothers who underwent cesarean delivery and 24.76 (SD 4.956) for their counterparts. Unfavorable maternal outcome was experienced by 20.5% and 14.7% of pregnant women who gave birth by cesarean and vaginal delivery, respectively. Those not having antenatal care follow-up were five times more likely to encounter unfavorable outcome than attendees (AOR 5.22, 95% CI 1.85-14.69), while mothers of newborns with low 5th minute Apgar score were 3 times (AOR 2.96, 95% CI 1.07, 8.16), multi-parity 7 times (AOR 7.22, 95% CI 1.45, 36.05) and rural residence were 1.29 times (AOR 1.29, 95% CI 5.09, 12.88) more likely to develop unfavorable feto-maternal outcome.</p><p><strong>Conclusion: </strong>Vaginal delivery results in more favorable feto-maternal outcomes than does cesarean delivery.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"12 ","pages":"227-236"},"PeriodicalIF":2.1,"publicationDate":"2021-07-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/97/75/prom-12-227.PMC8274704.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39184195","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":"Validity of Current Assessment Tools Aiming to Measure the Affective Component of Pain: A Systematic Review.","authors":"Anders Heiberg Agerbeck,&nbsp;Frederik Handberg Juul Martiny,&nbsp;Christian Patrick Jauernik,&nbsp;Karin Due Bruun,&nbsp;Or Joseph Rahbek,&nbsp;Kristine H Bissenbakker,&nbsp;John Brodersen","doi":"10.2147/PROM.S304950","DOIUrl":"https://doi.org/10.2147/PROM.S304950","url":null,"abstract":"<p><p>The objective of this study was to identify patient-reported outcome measures (PROMs), which aim to measure the affective component of pain and to assess their content validity, unidimensionality, measurement invariance, and Internal consistency in patients with chronic pain. The study was reported according to the PRISMA guidelines. A protocol of the review was submitted to PROSPERO before data extraction. Eligible studies were any type of study that investigated at least one of the domains: PROM development, content validity, dimensionality, internal consistency, or measurement invariance of any type of scale that claimed to measure the affective component of pain among patients with chronic pain. The databases Medline, Embase, PsycINFO, and the Cochrane Library were searched for eligible studies. The database search was supplemented by looking for relevant articles in the reference list of included studies, ie backtracking. All included studies were assessed independently by two authors according to the \"COSMIN methodology on Systematic Reviews of Patient-Reported Outcome Measures\". Descriptive data synthesis of the identified PROMs was conducted. The search yielded 11,242 titles of which 283 were assessed at the full-text level. Full-text screening led to the inclusion of 11 studies and an additional 28 studies were identified via backtracking, leading to the inclusion of 39 studies in total in the review. Included studies described the development and validity of 10 unique PROMs, all of which we assessed to have potentially inadequate content validity and doubtful psychometric properties. No studies reported whether the PROMs possessed invariant measurement properties. The existing PROMs measuring affective components of chronic pain potentially lack content validity and have inadequate psychometric measurement properties. There is a need for new PROMs measuring the affective component of chronic pain that possess high content validity and adequate psychometric measurement properties.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"12 ","pages":"213-226"},"PeriodicalIF":2.1,"publicationDate":"2021-07-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/fe/f8/prom-12-213.PMC8274708.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39184194","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":"Health-Related Quality of Life in Tuberculosis Patients in Eritrea: Comparison Among Drug-Susceptible and Rifampicin/Multidrug-Resistant Tuberculosis Patients.","authors":"Zenawi Zeramariam Araia, Araia Berhane Mesfin, Amanuel Hadgu Mebrahtu, Adiam Ghebreyohanns Tewelde, Asmerom Tesfagiorgis Tewelde, Solyana Ngusbrhan Kidane","doi":"10.2147/PROM.S316337","DOIUrl":"10.2147/PROM.S316337","url":null,"abstract":"<p><strong>Background: </strong>Despite the negative impact of tuberculosis (TB) on patients' quality of life, TB control programs focus on biological and clinical parameters to manage and monitor TB patients. In our setting, patients' perception of their experience with TB and the impacts of TB on patients' physical, mental, and social wellbeing remain unknown.</p><p><strong>Objective: </strong>The objective of this study was to evaluate the health-related quality of life (HRQOL) among rifampicin/multidrug-resistant TB (RR/MDR-TB) in comparison to drug-susceptible TB (DS-TB) patients in Eritrea.</p><p><strong>Methods: </strong>A cross-sectional study was conducted in RR/MDR-TB and DS-TB patients under treatment. Anonymized data collected using the WHOQOL-BREF questionnaire were analyzed using SPSS version 23. Frequency, mean and standard deviation were used to describe the data. Mean group score comparison and relationship between variables were assessed using <i>t</i>-test. Domain score was calculated with a mean score of items within each domain and scaled positively, a higher (increasing) score denoting a higher quality of life. Internal consistency was measured using Cronbach's alpha and statistical significance was set at p < 0.05.</p><p><strong>Results: </strong>A total of 92 patients (46 RR/MDR-TB and 46 DS-TB) participated in the study. Environmental (40.63 ± 10.72) and physical domains (61.80 ±17.18) were the two most affected domains in RR/MDR-TB and DS-TB patients, respectively. The psychological domain was the least affected domain in RR/MDR-TB (48.28 ± 20.83) and DS-TB patients (76.63 ±15.32). RR/MDR-TB patients had statistically lower mean scores in all domains than DS-TB patients.</p><p><strong>Conclusion: </strong>HRQOL was impaired in both groups, but RR/MDR-TB patients had a worse health-related quality of life.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"12 ","pages":"205-212"},"PeriodicalIF":1.8,"publicationDate":"2021-06-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/5e/ad/prom-12-205.PMC8254609.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39162606","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":"Do Generic Preference-Based Measures Accurately Capture Areas of Health-Related Quality of Life Important to Individuals with Amyotrophic Lateral Sclerosis: A Content Validation Study.","authors":"Nicole Peters,&nbsp;Vanina Dal Bello-Haas,&nbsp;Tara Packham,&nbsp;Marvin Chum,&nbsp;Colleen O'Connell,&nbsp;Wendy S Johnston,&nbsp;Joy C MacDermid,&nbsp;John Turnbull,&nbsp;Jill Van Damme,&nbsp;Ayse Kuspinar","doi":"10.2147/PROM.S313512","DOIUrl":"https://doi.org/10.2147/PROM.S313512","url":null,"abstract":"<p><strong>Objective: </strong>The objectives of this study were to 1) assess the content validity of generic preference-based measures (GPBMs), and (2) examine the convergent validity of the EuroQol 5 Dimension 5 Level (EQ-5D-5L), against the Patient Generated Index (PGI) in Amyotrophic Lateral Sclerosis (ALS).</p><p><strong>Methods: </strong>Participants were recruited from 3 clinical sites across Canada. The PGI, EQ-5D-5L and Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) were administered through an online or hardcopy survey and scores compared for convergent validation. Domains nominated by participants as important to their health-related quality of life were generated using the PGI, classified using the International Classification of Functioning, Disability and Health (ICF) and mapped onto GPBMs to determine content coverage.</p><p><strong>Results: </strong>Fifty-two participants (N=28 female; 61.3 ± 11.6 mean age ± standard deviation (SD); 3.5 ± 2.9 mean ± SD years since diagnosis) completed this study. The top three ICF domains identified by participants were recreation and leisure, lower limb mobility, and interpersonal relationships. The Quality of Well-Being Self-Administered (QWB-SA) scale had the highest content coverage (87%) and the Health Utilities Index 3 (HUI3) had the lowest (33%). Two domains were covered by all GPBMs and no GPBM included all domains identified as important by participants. A moderate correlation coefficient of 0.52 between the PGI and EQ-5D-5L was found.</p><p><strong>Conclusion: </strong>The majority of GPBMs covered only approximately half of the domains important to individuals with ALS suggesting the need for an ALS specific preference-based measure to better reflect the health-related quality of life of this population.</p>","PeriodicalId":19747,"journal":{"name":"Patient Related Outcome Measures","volume":"12 ","pages":"191-203"},"PeriodicalIF":2.1,"publicationDate":"2021-06-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/a5/36/prom-12-191.PMC8242131.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39141126","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}