"Generality of mis-fit"? The real-life difficulty of matching scales in an interconnected world.
Ontology highlight
ABSTRACT:
SUBMITTER: Keskitalo EC
PROVIDER: S-EPMC5012993 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:Using a world-wide, population-based dataset, we sought to examine the relationship between visual difficulty and employment status.The World Health Survey was conducted in 70 countries throughout the world in 2003 using a random, multi-stage, stratified, cluster sampling design. Far vision was assessed by asking about the level of difficulty in seeing and recognizing a person you know across the road (i.e. from a distance of about 20 meters). Responses included none, mild, moderate, severe, or extreme/unable. Participants were asked about their current job, and if they were not working, the reason why (unable to find job, ill health, homemaker, studies, unpaid work, other). The occupation in the last 12 months was obtained. Multinomial regression was used accounting for the complex survey design.Of those who wanted to work, 79% of those with severe visual difficulty and 64% of those with extreme visual difficulty were actually working. People who had moderate, severe, or extreme visual difficulty had a higher odds of not working due to an inability to find a job and of not working due to ill health after adjusting for demographic and health factors (P<0.05).As the major causes of visual impairment in the world are uncorrected refractive error and cataract, countries are losing a great deal of labor productivity by failing to provide for the vision health needs of their citizens and failing to help them integrate into the workforce.
| S-EPMC3917855 | biostudies-other
Project description:With increasing digitization of healthcare, real-world data (RWD) are available in greater quantity and scope than ever before. Since the 2016 United States 21st Century Cures Act, innovations in the RWD life cycle have taken tremendous strides forward, largely driven by demand for regulatory-grade real-world evidence from the biopharmaceutical sector. However, use cases for RWD continue to grow in number, moving beyond drug development, to population health and direct clinical applications pertinent to payors, providers, and health systems. Effective RWD utilization requires disparate data sources to be turned into high-quality datasets. To harness the potential of RWD for emerging use cases, providers and organizations must accelerate life cycle improvements that support this process. We build on examples obtained from the academic literature and author experience of data curation practices across a diverse range of sectors to describe a standardized RWD life cycle containing key steps in production of useful data for analysis and insights. We delineate best practices that will add value to current data pipelines. Seven themes are highlighted that ensure sustainability and scalability for RWD life cycles: data standards adherence, tailored quality assurance, data entry incentivization, deploying natural language processing, data platform solutions, RWD governance, and ensuring equity and representation in data.
| S-EPMC9931348 | biostudies-literature
Project description:BackgroundThe optimal timing of surgery for pectus excavatum (PE) is controversial. A large proportion of children will not undergo surgery before puberty. However, untimely surgery may lead to a decline in the children's social adaptation and competitiveness because the children have already developed psychological and physiological impairments due to PE at an early age. The study retrospectively compared the academic performance in PE children undergoing the Nuss procedure versus nonsurgical observation.MethodsThis retrospective real-world research study included 480 PE patients with definite surgical indications, in whom it was first recommended that they undergo surgery between the ages of 6 and 12 years old. Academic performance was collected at baseline and 6 years later. A generalized linear regression was calculated to screen the factors affecting the performance. A propensity score matching (PSM) analysis was conducted to reduce the potential for confounding factors between surgical and nonsurgical PE patients.ResultsHaller index (HI) and pulmonary function were recognized as factors affecting baseline performance according to the generalized linear regression. For PE children with surgical indications, their academic performance significantly declined after 6 years of nonsurgical observation (52.1% ± 17.1% versus 58.3% ± 16.7%, p = 0.042). The academic performance in the surgery group was better than that in the nonsurgery group 6 years after PSM (60.7% ± 17.7% versus 52.1% ± 17.1%, p = 0.008).ConclusionsThe severity of PE will affect the academic performance of children.For PE children with definite surgical indications between the ages of 6 and 12 years old, surgical intervention rather than nonsurgical observation is more conducive to the development of children's academic performance.
| S-EPMC9972046 | biostudies-literature
Project description:Continuous flash suppression (CFS) is a popular method for suppressing visual stimuli from awareness for relatively long periods. Thus far, this method has only been used for suppressing two-dimensional images presented on screen. We present a novel variant of CFS, termed "real-life" CFS, in which a portion of the actual immediate surroundings of an observer-including three-dimensional, real-life objects-can be rendered unconscious. Our method uses augmented reality goggles to present subjects with CFS masks to the dominant eye, leaving the nondominant eye exposed to the real world. In three experiments we demonstrated that real objects can indeed be suppressed from awareness for several seconds, on average, and that the suppression duration is comparable to that obtained using classic, on-screen CFS. As supplementary information, we further provide an example of experimental code that can be modified for future studies. This technique opens the way to new questions in the study of consciousness and its functions.
| S-EPMC6877487 | biostudies-literature
Project description:Commercial automated insulin delivery (AID) systems are usually assessed based on clinical outcomes, ignoring uptake. A qualitative study evaluated user experiences when switching to currently available commercial AID. Interview feedback was coded on key themes including the adoption experience with regards to quality of life, clinical outcomes, and users' expectations. Most felt their learning curve was easy. Most saw reduced hypoglycemia and increased time in range, although there were outliers. Many mentioned post-meal hyperglycemia as an improvement area for commercial AID. Users with one particular continuous glucose monitor (CGM) type reported sleep disruption. Companies should consider real-world user feedback with regards to improving training materials for new users with less CGM experience and by improving target flexibility and postprandial algorithm performance, plus reducing manual interventions required by users.
| S-EPMC8861778 | biostudies-literature
Project description:BACKGROUND: This study investigates the usefulness of the nonparametric monotone homogeneity model for evaluating and constructing Health-Related Quality-of-Life Scales consisting of polytomous items, and compares it to the often-used parametric graded response model. METHODS: The nonparametric monotone homogeneity model is a general model of which all known parametric models for polytomous items are special cases. Merits, drawbacks, and possibilities of nonparametric and parametric models and available software are discussed. Particular attention is given to the monotone homogeneity model (also known as the Mokken model), and the often-used parametric graded response model. RESULTS: Data from the WHOQOL-Bref were analyzed using both the monotone homogeneity model and the graded response model. The monotone homogeneity model analysis yielded unidimensional scales for each content domain. Scalability coefficients further showed that some items have limited scalability with respect to the other items in the same scale. The parametric IRT analyses lead to the rejection of some of the items. CONCLUSIONS: The nonparametric monotone homogeneity model is highly suited for data analysis in a health-related quality-of-life context, and the parametric graded response model may add interesting features to measurement provided the model fits the data well.
| S-EPMC2238782 | biostudies-other
Project description:BackgroundThe safety, feasibility, and prognosis of sleeve lobectomy by minimally invasive surgery (MIS) remain to be validated. The purpose of this study was to investigate outcomes in real-world patients receiving minimally invasive sleeve lobectomy in a balanced large cohort.MethodsBetween January 2013 and December 2018, 578 consecutive patients undergoing sleeve resection at a high-volume center were retrospectively analyzed. Surgical and oncologic outcomes were compared between MIS and thoracotomy patients after propensity-score matching (PSM).ResultsMIS sleeve lobectomy was increasingly used as a time-trend in real-world. Before PSM, the MIS group had smaller tumor size, more T2-stage cases, and more right upper lobe sleeve lobectomies compared to the Open group. After 1:4 PSM by patient demographics and tumoral characteristics, 100 cases of MIS and 338 cases of Open sleeve lobectomy were further analyzed. Although median operation time was longer in the MIS group than in the Open group (170.5 minutes vs.149.5 minutes, P < 0.001), patients in MIS group had significantly less estimated intraoperative blood loss (100 ml vs. 200 ml, P = 0.003), shorter drainage duration (5 days vs. 6 days, P = 0.027) and less amount of drainage (1280 ml vs. 1640 ml, P < 0.001) after surgery. Complete resection rate, combined angioplasty, number of dissected lymph nodes, post-operative length of stay, postoperative morbidity and mortality rate, and application of adjuvant therapy were similar between the two matched groups. Conversion to open thoracotomy was necessary in 13.6% patients, but with similar perioperative outcomes compared to Open cases except for longer operation time. More lower lobe sleeve lobectomies were accomplished via robot-assisted thoracoscopic surgery than via video-assisted thoracoscopic surgery (40.0% vs. 12.0%, P = 0.017) in MIS patients. Five-year overall survivals (MIS vs. Open: 72.7% vs. 64.4%, P = 0.156) and five-year progression-free survivals (MIS vs. Open: 49.2% vs. 50.5%, P = 0.605) were similar between the two matched groups.ConclusionsMIS sleeve lobectomy is associated with similar or even better perioperative results and oncologic outcomes to open thoracotomy. Conversion to thoracotomy does not compromise perioperative outcomes. Robot surgery may be preferable for more complex sleeve resections.
| S-EPMC9929062 | biostudies-literature
Project description:The modest efficacy of psychological interventions for youth depression, including evidence-based psychotherapies (EBPs), suggests a question: Do the therapy components match the coping strategies youths find helpful when dealing with depressed mood? Answering this question may help strengthen treatments. We asked 105 middle schoolers across a range of depression symptom levels to identify the coping strategies they used when they felt sad (habitual responses) and those that made them feel better (perceived-effective responses). Habitual and perceived-effective responses were coded for resemblance to EBPs, and each youth's habitual responses were coded for their match to the youth's perceived-effective responses. Most perceived-effective responses (92.6%) matched EBP components (most frequent: Behavioral Activation); however, 65.0% of the EBP components did not match any youth's habitual or perceived-effective responses. Youths at higher depression symptom levels were significantly more likely than low-symptom youths to report (a) habitual responses that did not match EBP components, (b) habitual responses that did not match their own perceived-effective responses, and (c) perceiving no effective response. The higher their depression symptom level, the less likely youths were to use strategies identified by researchers and perceived by themselves as effective, and the less likely they were to identify any perceived-effective coping strategy. The findings suggest a need to (a) determine which EBP components do in fact enhance youth coping, (b) design the most effective ways to help youths master those effective components, and
| S-EPMC4670284 | biostudies-literature
Project description:BackgroundLenvatinib is approved for patients with advanced hepatocellular carcinoma (HCC) due to its non-inferiority to sorafenib of overall survival (OR) in clinical trials. This study was to compare the effectiveness and safety of lenvatinib and sorafenib in the real world.MethodsWe retrospectively evaluated 338 patients with unresectable HCC who had undergone lenvatinib or sorafenib treatment between January 2018 and August 2020. Propensity-score matching analysis was performed with a 1:2 ratio to reduce the real-life baseline difference between the two groups.ResultsA total of 210 patients (Male/Female: 150/60, mean age: 65.8 years) were recruited including 70 patients in the Lenvatinib group and 140 patients in the Sorafenib group. Compared with sorafenib, lenvatinib had significantly longer progression-free survival (PFS) (5.2 vs 3.3 months, p=0.019) but similar OR (13.3 vs 11.8 months, p=0.714). Additionally, lenvatinib had better disease control rates (62.3 vs 48.6%, p=0.029) and equivalent incidences of treatment-related adverse events over sorafenib. In multivariate analysis, lenvatinib was associated with better PFS over sorafenib (hazard ratio: 0.49, 95% confidence interval: 0.3-0.79, p=0.004) after adjustments of albumin-bilirubin grade and alpha-fetoprotein level; however, different agents using lenvatinib or sorafenib did not contribute to OS, whether in univariate or multivariate analysis. Patients who failed lenvatinib had a lower proportion of having sequential systemic therapies compared with the Sorafenib group (36.2 vs 47.8%, p=0.02). The most frequently used sequential therapy following lenvatinib and sorafenib was chemotherapy (n=9, 42.8%) and regorafenib (n=33, 50.8%), respectively.ConclusionsIn clinical real-life practice, lenvatinib illustrated promising survival benefits and acceptable safety for patients with unresectable HCC, while reducing the risk of progression disease compared with sorafenib. Additionally, lack of approved post-lenvatinib systemic therapies is a serious issue in the real world.
| S-EPMC8573180 | biostudies-literature
Project description:ObjectivesThe aim of this study is to quantify the mortality rate, direct healthcare costs, and cumulative life costs of pediatric patients with spinal muscular atrophy (SMA) type 1, type 2, and type 3 born in Hong Kong.MethodsData were collected from genetically confirmed SMA patients born in or after 2000 from the Hospital Authority medical database. Patients were followed up from birth until they died, left Hong Kong, reached 18 years, or initiated disease-modifying treatment. Study outcomes included incidence risks of mortality, cumulative direct medical costs-attendances of special outpatient clinics, emergency department, allied health services, and mean length of stay in hospitals over time. Total direct medical costs were calculated as unit costs multiplied by utilization frequencies of corresponding healthcare services at each age.ResultsSeventy-one patients with SMA were included. Over a median follow-up period of 6 years, the overall incidence rate of death was 5.422/100 person-years (95%CI 3.542-7.945/100 person-years). 67.7% and 11% of deaths occurred in SMA1 and SMA2 groups, respectively. The median age of death was 0.8 years in SMA1 and 10.9 years in SMA2. The mean cumulative direct medical costs in overall SMA, SMA1, SMA2 and SMA3 groups per patient were US$935,570, US$2,393,250, US$413,165, and US$40,735, respectively.InterpretationOur results confirmed a significantly raised mortality and extremely high healthcare burden for patients with SMA especially SMA type 1 and 2 without disease-modifying treatment. Study evaluating health and economic impact of newborn screening and early treatment is needed.
| S-EPMC10533630 | biostudies-literature