Outcomes Research Research Articles

Prevalence and correlates of alcohol use among the elderly in the Eastern Caribbean Health Outcomes Research Network (ECHORN) cohort study

BackgroundAlcohol use is pervasive in the Caribbean; however, the prevalence and correlates of alcohol use and drinking problems in the elderly have not been extensively studied. MethodsData were obtained from the Eastern Caribbean Health Outcomes Research Network (ECHORN) Cohort Study, a cohort study of Caribbean people from Puerto Rico, Barbados, Trinidad, and Tobago, and the U.S. Virgin Islands, collected between 2013 and 2018 (baseline study sample, ages 60+, n = 811). Descriptive statistics were used to compare the differences in drinking status (current vs. former vs. never), alcohol problems (Cut-down, Annoyed, Guilty, and Eye-opener (CAGE) scale score ≥2 vs. <2), and binge drinking days (0 days vs. 1–2 days vs. ≥3 days) across sample characteristics. Logistic regression analyses estimated the association of these alcohol measures with sociodemographic (e.g., sex), psychological (depression), and cultural (e.g., religion) correlates. ResultsThirty-six percent were 70 + years of age, 64 % were female, and 41 % had less than a high school education. Alcohol problems (≥2 CAGE score) was 21 %. Binge drinking ≥3 days was 30.6 %. Never attending religious services (vs. attending once a week or more) was associated with almost three times higher odds of alcohol problems (adjusted Odds Ratio: OR = 2.88, 95 % CI = 1.02, 8.15) four times higher odds of increasing binge drinking days (aOR = 4.04, 95 % CI = 1.11, 14.96). College education was protective against both the outcomes. ConclusionWe provide current estimates of alcohol problems among elderly Eastern Caribbean people. Among the sociodemographic, psychological, and cultural correlates examined, religious attendance was significant. Replicate longitudinal studies using DSM-5 alcohol dependence are recommended.

Race and ethnicity and pharmacy dispensing of SGLT2 inhibitors and GLP-1 receptor agonists in type 2 diabetes

Sodium-Glucose Cotransporter 2 Inhibitors (SGLT2i) and Glucagon-Like Peptide-1 Receptor Agonists (GLP-1 RA) improve cardiorenal outcomes in patients with type 2 diabetes. Equitable use of SGLT2i and GLP-1 RA has the potential to reduce racial and ethnic health disparities. We evaluated trends in pharmacy dispensing of SGLT2i and GLP-1 RA by race and ethnicity. Retrospective cohort study of patients (≥18 years) with type 2 diabetes using 2014-2022 electronic health record data from six US care delivery systems. Entry was at earliest pharmacy dispensing of any type 2 diabetes medication. We used multivariable logistic regression to evaluate the association between pharmacy dispensing of SGLT2i and GLP1-RA and race and ethnicity. Our cohort included 687,165 patients (median 6 years of dispensing data; median 60 years; 0.3% American Indian/Alaska Native (AI/AN), 16.6% Asian, 10.5% Black, 1.4% Hawaiian or Pacific Islander (HPI), 31.1% Hispanic, 3.8% Other, and 36.3% White). SGLT2i was lower for AI/AN (OR 0.80, 95% confidence interval 0.68-0.94), Black (0.89, 0.86-0.92) and Hispanic (0.87, 0.85-0.89) compared to White patients. GLP-1 RA was lower for AI/AN (0.78, 0.63-0.97), Asian (0.50, 0.48-0.53), Black (0.86, 0.83-0.90), HPI (0.52, 0.46-0.57), Hispanic (0.69, 0.66-0.71), and Other (0.78, 0.73-0.83) compared to White patients. Dispensing of SGLT2is, and GLP-1 RAs was lower in minority group patients. There is a need to evaluate approaches to increase use of these cardiorenal protective drugs in patients from racial and ethnic minority groups with type 2 diabetes to reduce adverse cardiorenal outcomes and improve health equity. Patient-Centered Outcomes Research Institute and National Institutes of Health.

Application of artificial intelligence to hepatobiliary cancer clinical outcomes research

The rapid evolution of modern technology has made artificial intelligence (AI) an important emerging tool in healthcare. AI, which is a broad field of computer science, can be used to develop systems or machines equipped with the ability to tackle tasks that traditionally necessitate human intelligence. AI can be used to perform multifaceted tasks that involve the synthesis of large amounts of data with the generation of solutions, algorithms, and decision support tools. Various AI approaches, including machine learning (ML) and natural language processing (NLP), are increasingly being used to analyze vast healthcare datasets. In addition, visual AI has the potential to revolutionize surgery and the intraoperative experience for surgeons through augmented reality enhancing surgical navigation in real-time. Specific applications of AI in hepatobiliary tumors such as hepatocellular carcinoma and biliary tract cancer can improve patient diagnosis, prognostic risk stratification, as well as treatment allocation based on ML-based models. The integration of radiomics data and AI models can also improve clinical decision making. We herein review how AI may be of particular interest in the care of patients with complex cancers, such as hepatobiliary tumors, as these patients often require a multimodal treatment approach.

Building transparency and reproducibility into the practice of pharmacoepidemiology and outcomes research.

Real-world evidence (RWE) studies are increasingly used to inform policy and clinical decisions. However, there remain concerns about the credibility and reproducibility of RWE studies. Observational researchers should highlight the level of transparency of their studies by providing a succinct statement addressing study transparency with the publication of every paper, poster, or presentation that reports on a RWE study. In this paper, we propose a framework for an explicit transparency statement that declares the level of transparency a given RWE study has achieved across five key domains: 1) protocol, 2) pre-registration, 3) data, 4) code sharing, and 5) reporting checklists.

Extracting big data from the internet to support the development of a new patient-reported outcome measure for breast implant illness: a proof of concept study.

Individuals with health conditions often use online patient forums to share their experiences. These patient data are freely available and have rarely been used in patient-reported outcomes (PRO) research. Web scraping, the automated identification and coding of webpage data, can be employed to collect patient experiences for PRO research. The objective of this study was to assess the feasibility of using web scraping to support the development of a new PRO measure for breast implant illness (BII). Nine publicly available BII-specific web forums were chosen post-consultation with two prominent BII advocacy leaders. The Python Selenium and Pandas packages were used to automate extraction of de-identified text from the individual posts/comments into a spreadsheet. Data were coded using a line-by-line approach and constant comparison was used to create top-level domains and sub-domains. 6362 unique codes were identified and organized into four top-level domains of information needs, symptom experiences, life impact of BII, and care experiences. Information needs of women included seeking/sharing information pre-breast implant surgery, post-breast implant surgery, while contemplating explant surgery, and post-explant surgery. Symptoms commonlydescribed by women included fatigue, brain fog, and musculoskeletal symptoms. Many comments described BII's impact on daily activities and psychosocial wellbeing. Lastly, some comments described negative care experiences and experiences related toadvocating for themselves to providers. This proof-of-concept study demonstrated the feasibility of employing web scraping as a cost-effective, efficient method to understand the experiences of women with BII. These data will be used to inform the development of a BII-specific PROM.

A New Construct in Undergraduate Medical Education Health Humanities Outcomes: Humanistic Practice.

Proposed educational outcomes for the health humanities in medical education range from empathy to visual thinking skills to social accountability. This lack of widely agreed-upon high-level curricular goals limits humanities educators' ability to design purposeful curricula toward clear, common ends and threatens justifications for scarce curricular time. We propose a novel approach to the hoped-for outcomes of health humanities training in medical schools, which has the potential to encompass traditional health humanities knowledge, skills, and behaviors while also being concrete and measurable: humanistic practice. Humanistic practice, adapted from the concept of ethical sensitivity, is an intentional process of applying humanities knowledge and skills to a clinical scenario by 1) noticing that the scenario requires humanities knowledge or skills, 2) informing one's clinical and interpersonal strategy and behavior with humanities knowledge or skills, 3) reflecting on the effectiveness of the strategy and behavior, and 4) reorienting to develop new approaches for future practice. The construct of humanistic practice may help address some of the foundational problems in health humanities outcomes research since it transcends the traditional diverse content domains in the health humanities, can link patient and provider experiences, and may bridge the divide among the additive, curative, and intrinsic epistemic positions of humanities to medical education.

Dutch translation and cultural adaptation of new LYMPH-Q- scales measuring impact on work and lymphedema worry

BackgroundBreast cancer-related lymphedema (BCRL) is a significant complication of breast cancer treatment that can impact patients’ quality of life. This study focuses on the translation and cultural adaptation of two new LYMPH-Q scales ‘Impact on Work’ and ‘Lymphedema worry’ into Dutch to assess the work-related challenges and worries experienced by patients with BCRL in the Netherlands.MethodsThe translation process followed established guidelines from the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) and the World Health Organization (WHO). Forward and back translations, expert panel reviews, cognitive debriefing interviews with patients with BCRL, and proofreading were conducted to refine the Dutch translation of the scales. The translation aimed to ensure conceptual equivalence and cultural relevance.ResultsThe translation process resulted in the Dutch versions of the LYMPH-Q ‘Impact on Work’ and ‘Lymphedema worry’ scales. The forward translation revealed discrepancies in meaning, word order and synonyms. The back translation and review resulted in changes in item formulation. The expert panel meeting and cognitive debriefing interviews provided valuable input for further refinement.ConclusionThe translated LYMPH-Q ‘Impact on Work’ and ‘Lymphedema worry’ scales provide healthcare professionals with an instrument to assess and monitor the impact of BCRL on work-related challenges and on worries. This comprehensive translation process, involving patients with BCRL and experts, ensured the linguistic accuracy, cultural relevance, and clarity of the Dutch versions. The translated scales will contribute to a better understanding of the multifaceted impact of BCRL and facilitate the development of tailored interventions to improve patients’ well-being and functional outcomes.Level of Evidence:Not ratable

Clinical Subsets of Central Cord Syndrome: Is It a Distinct Entity from Other Forms of Incomplete Tetraplegia for Research?

Central cord syndrome (CCS) is the most prevalent and debated incomplete spinal cord injury (SCI) syndrome, with its hallmark feature being more pronounced weakness of the upper extremities than of the lower extremities. Varying definitions encapsulate multiple clinical features under the single umbrella term of CCS, complicating evaluation of its frequency, prognosis discussions, and outcomes research. Often, people with CCS are excluded from research protocols, as it is thought to have a favorable prognosis, but the vague nature of CCS raises doubts about the validity of this practice. The objective of this study was to categorize CCS into specific subsets with clear quantifiable differences, to assess whether this would enhance the ability to determine if individuals with CCS or its subsets exhibit distinct neurological and functional outcomes relative to others with incomplete tetraplegia. This study retrospectively reviewed individuals with new motor incomplete tetraplegia from traumatic SCI who enrolled in the Spinal Cord Injury Model Systems (SCIMS) database from 2010 to 2020. Through an assessment of the prevailing criteria for CCS, coupled with data analysis, we used two key criteria, including the severity of distal upper extremity weakness (i.e., hands and fingers) and extent of symmetry, to delineate three CCS subsets: full CCS, unilateral CCS, and borderline CCS. Of the 1490 participants in our sample, 17.5% had full, 25.6% had unilateral, and 9% had borderline CCS, together encompassing >50% of motor incomplete tetraplegia cases. Despite the increased sensitivity and specificity of these subsets compared with existing quantifiable criteria, substantial variability in clinical presentation was still observed. Overall, individuals meeting CCS subset criteria showed a higher likelihood of American Spinal Injury Association (ASIA) Impairment Scale (AIS) D grade than those with motor incomplete tetraplegia without CCS. Upper Extremity Motor Score (UEMS) for those with CCS was lower on admission, a difference that diminished by discharge, whereas their Lower Extremity Motor Score (LEMS) consistently remained higher than for those without CCS. However, these neurological distinctions did not result in significant functional differences, as lower and upper extremity functional outcomes at discharge were mostly similar, with some differences observed within those with AIS D grade. The AIS grade, rather than the diagnosis of CCS, remains the foremost determinant influencing neurological and functional outcomes. We recommend that future studies consider incorporating motor incomplete tetraplegia into their inclusion/exclusion criteria, instead of relying on criteria specific to CCS. Although there remains clinical value in characterizing an injury pattern as CCS and perhaps using the different subsets to better characterize the impairments, it does not appear to be a useful research criterion.

Machine learning models for abstract screening task - A systematic literature review application for health economics and outcome research

ObjectiveSystematic literature reviews (SLRs) are critical for life-science research. However, the manual selection and retrieval of relevant publications can be a time-consuming process. This study aims to (1) develop two disease-specific annotated corpora, one for human papillomavirus (HPV) associated diseases and the other for pneumococcal-associated pediatric diseases (PAPD), and (2) optimize machine- and deep-learning models to facilitate automation of the SLR abstract screening.MethodsThis study constructed two disease-specific SLR screening corpora for HPV and PAPD, which contained citation metadata and corresponding abstracts. Performance was evaluated using precision, recall, accuracy, and F1-score of multiple combinations of machine- and deep-learning algorithms and features such as keywords and MeSH terms.Results and conclusionsThe HPV corpus contained 1697 entries, with 538 relevant and 1159 irrelevant articles. The PAPD corpus included 2865 entries, with 711 relevant and 2154 irrelevant articles. Adding additional features beyond title and abstract improved the performance (measured in Accuracy) of machine learning models by 3% for HPV corpus and 2% for PAPD corpus. Transformer-based deep learning models that consistently outperformed conventional machine learning algorithms, highlighting the strength of domain-specific pre-trained language models for SLR abstract screening. This study provides a foundation for the development of more intelligent SLR systems.

Swedish translation and cultural adaptation of the scored Patient-Generated Subjective Global Assessment (PG-SGA©)-A validated tool for screening and assessing malnutrition in clinical practice and research.

The scored Patient-Generated Subjective Global Assessment (PG-SGA©) is a validated tool for the screening, assessment and monitoring of malnutrition, and triaging of interventions. It contains a patient-generated component and a healthcare professional (HCP)-generated component. To translate the PG-SGA into Swedish, assess the linguistic and content validity of the Swedish version, and ensure conceptional, semantic and operational equivalence to the original English PG-SGA. In line with the methodology used in previously translated and culturally adapted versions, the standardised 10-step process suggested by the International Society for Health Economics and Outcomes Research (ISPOR) was followed. In step 7, a cross-sectional study targeting patients n = 51 and HCPs n = 52 was performed at a university hospital in Sweden. Using separate questionnaires, patients assessed the patient component and HCPs, the professional component regarding perceived comprehensibility and difficulty (linguistic validity). The HCPs also assessed perceived relevance (content validity) of all items on the PG-SGA. Item indices for comprehensibility (I-CI), difficulty (I-DI) and content validity (I-CVI) were calculated and averaged into scale indices (S-CI, S-DI and S-CVI). Cut-off standards for item and scale indices were used as reference. The Swedish version of the PG-SGA rated excellent for comprehensibility (S-CI 0.96) and difficulty (S-DI 0.93) for the patient component. The professional component rated acceptable for comprehensibility (S-CI 0.89) and below acceptable for difficulty (S-DI 0.70), with the physical examination rated most difficult (I-DI 0.39 to 0.69). Content validity for the full Swedish PG-SGA was rated excellent (S-CVI 0.94). The patient component was considered clear and easy to complete. The full Swedish PG-SGA was considered relevant by HCPs for screening and assessment of malnutrition. Due to perceived difficulty with the physical examination, training of Swedish HCPs in using the PG-SGA is essential before implementing the professional component into clinical practice or research.

Chronic Pulmonary Aspergillosis after Surgical Treatment for Non-Small Cell Lung Cancer-An Analysis of Risk Factors and Clinical Outcomes.

Chronic pulmonary aspergillosis (CPA) is a rare but significant complication of lung cancer surgery. Its effect on survival remains unclear. Our aim was to describe the outcomes of the patients who developed CPA following the surgery for non-small cell lung cancer (NSCLC), identify the risk factors associated with its development following lung resection, and evaluate its impact on survival. All the patients with a diagnosis of CPA and operated NSCLC were identified in the National Aspergillosis Centre (NAC) database (2009-2020). Additional patients were identified in the Northwest Clinical Outcomes Research Registry (2012-2019) database. A regression analysis was performed to examine potential links between CPA and long-term outcomes and also to identify the factors associated with the development of CPA. The primary outcomes were the development of CPA, 1-year and 5-year mortality, and overall survival. Thirty-two patients diagnosed with CPA after lung resection were identified in the NAC database, of which 11 were also contained within the NCORR database, with a prevalence of 0.2% (n = 11/4425). Post-operative CPA was associated with significantly lower survival on log-rank analysis (p = 0.020). Mortality at one year was 25.0% (n = 8) and 59.4% (n = 19) at five years after the CPA diagnosis. On univariable analysis, a lower mean percentage-predicted forced expiratory volume in 1 s, ischaemic heart disease, and chronic obstructive pulmonary disease were all significantly associated with CPA development. CPA is a rare complication following lung cancer surgery which has a significant impact on long-term survival. Its development may be associated with pre-existing cardiopulmonary comorbidities. Further research in larger cohorts is required to substantiate these findings.

Abstract PO4-13-04: Added Value from Patient Advocates in a Translational Working Group: the COMET Study

Abstract Introduction: A phase III multicenter prospective randomized clinical trial called “Comparing an Operation to Monitoring, with or without Endocrine Therapy (COMET)” (NCT02926911) assesses the risks/benefits of active monitoring (AM) versus surgery for women with low-risk ductal carcinoma in situ (DCIS). It is funded by the Patient-Centered Outcomes Research Institute and enrolled 997 women between 06/30/17 and 01/13/23. Research Patient Advocates (PAs) have been embedded from the study design stage and continue to provide guidance as part of the COMET leadership team. The COMET biobank is funded by independent foundations and is managed through monthly Translational Working Group (TWG) meetings. The TWG includes PAs, clinicians, pathologists, radiologists, and researchers from multiple institutions who discuss topics like categorization of biospecimens into discovery/validation sets; development of a pathology workflow/sample tracking process; use of small samples; and potential areas of future research/technologies that may improve DCIS diagnostics, prognostics, and care management. Methods: The TWG leveraged the existing Alliance Foundation Trials, LLC biobank infrastructure and facilitates the collection, submission, storage and analysis/use of blood, tissue, and breast images collected at specified timepoints and stored in central tissue/image repositories. PAs are active and integral in the TWG, assisting with logistical issues (contracts, transfer agreements, resource requests); communicating with sites; identifying study topics and biomarkers relevant to diverse patients; providing guidance on commercial predictive/prognostic tests; promoting effective stewardship of samples; ensuring overall focus remains on advancing clinical utility; and reporting translational study results to trial participants who agreed to donate samples/images. Results: Over 90% of requested samples/images have been submitted by ˃85 sites. Each patient’s biospecimens and pathology images are linked and de-identified for research. Use of artificial intelligence (AI) is being considered to assist in sample review. TWG members have complementary areas of expertise/experience and promote active stewardship for effective management of these scarce resources. PAs have played key roles concerning equitable data-sharing and acceleration of data and material transfer agreements. They have also been active in development of standards for discovery/training sets, validation test sets; communication procedures for patient cases that progress to future breast events; ways to catalog technologies (e.g., multi-omics, AI); and in research proposal review. Consensus has been achieved regarding major issues such as authorship, biospecimen custodianship, intellectual property, and criteria relevant to patient needs. Logistical barriers, including data sharing and technicalities of biospecimen release, have been resolved. The TWG also played an integral role in resolving recruitment challenges to COMET by creating standard pathology eligibility criteria, resulting in evidence-based protocol amendments that increased accrual. A retrospective review of biospecimens has been performed to determine adequacy for ensuing correlative molecular and spatial profiling studies. Conclusion: PAs help the COMET TWG set policy, and oversee biospecimen/image collection, and biobank use and sharing. PA input also facilitates equitable, transparent research studies and technology development that can improve personalized decisions for surgery versus AM in women with low-risk DCIS. PAs in the TWG aim to integrate the diagnostic and prognostic tools developed as part of the COMET study into future patient care. Citation Format: Deborah Collyar, Desiree Basila, Thomas Lynch, Stuart Schnitt, Jeffrey Marks, Siri Strand, Terry Hyslop, Sunil Badve, Mark Watson, H. T. Carisa Le-Petross, Lars Grimm, Robert West, Anna Weiss, Anna Rapperport, Lorraine King, Rachel Factor, Marc Ryser, Ann Partridge, E Shelley Hwang, Alastair Thompson. Added Value from Patient Advocates in a Translational Working Group: the COMET Study [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO4-13-04.

The Most Commonly Utilized Resiliency Measures in Orthopedic Surgery Outcomes Research, A Narrative Review

The Most Commonly Utilized Resiliency Measures in Orthopedic Surgery Outcomes Research, A Narrative Review

Quantifying Patient Expectations for Total Knee Arthroplasty: Expectations for Improvement are Greater than MCID

Achieving a minimal clinically important difference (MCID) in patient-reported outcomes (PROs) following total knee arthroplasty (TKA) is common, yet up to 20% patient dissatisfaction persists. Unmet expectations may explain post-TKA dissatisfaction. No prior studies have quantified patient expectations using the same PRO metric as used for MCID to allow direct comparison. This was a prospective study of patients undergoing TKA with five fellowship-trained arthroplasty surgeons at one academic center. Baseline Patient-Reported Outcomes Measurement Information System (PROMIS) Physical Function (PF) and Pain Interference (PI) domains were assessed. Expected PROMIS scores were determined by asking patients to indicate the outcomes they were expecting at 12 months postoperatively. Predicted scores were generated from a predictive model validated in the Function and Outcomes Research for Comparative Effectiveness in Total Joint Replacement (FORCE-TJR) dataset. T-tests were used to compare baseline, expected, and predicted PROMIS scores. Expected scores were compared to PROMIS MCID values obtained from the literature. Regression models were used to identify patient characteristics associated with high expectations. There were 93 patients included. Mean age was 67 years (range, 30 to 85) and 55% were women. Mean baseline PROMIS PF and PI was 34.4+/-6.7 and 62.2+/-6.4, respectively. Patients expected significant improvement for PF of 1.9 times the MCID (MCID = 11.3; mean expected improvement = 21.6, 95% CI [confidence interval] 19.6 to 23.5, P < 0.001) and for PI of 2.3 times the MCID (MCID=8.9; mean expected improvement=20.6, 95%CI 19.1-22.2, P < 0.001). Predicted scores were significantly lower than expected scores (mean difference = 9.5, 95% CI 7.7 to 11.3, P < 0.001). No unique patient characteristics were associated with high expectations (P > 0.05). To our knowledge, this study is the first to quantify preoperative patient expectations using the same metric as MCID to allow for direct comparison. Patient expectations for improvement following TKA are ∼2x greater than MCID and are significantly greater than predicted outcome scores. This discrepancy challenges currently accepted standards of success after TKA and indicates a need for improved expectation setting prior to surgery.

Future of outcomes research in plastic surgery: Artificial intelligence generated synthetic data and predictive models

Future of outcomes research in plastic surgery: Artificial intelligence generated synthetic data and predictive models

Impact of postsurgical rehabilitation on outcomes for degenerative cervical myelopathy.

Despite widespread use, there is limited evidence to support postsurgical rehabilitation to enhance neurological recovery after surgery for degenerative cervical myelopathy (DCM). Outcomes research for DCM seldom accounts for the effect of postsurgical rehabilitation. The aim of this study was to quantify the impact of postsurgical rehabilitation on outcomes after surgery for DCM. This was a retrospective analysis of prospectively collected data from a single center. The study enrolled 66 patients who underwent spinal surgery for DCM. In addition to patient demographic, imaging, and surgical data, chart review was performed to document the timing, type, duration, and outcomes of postsurgical rehabilitation therapy. Outcomes were collected prospectively, including the modified Japanese Orthopaedic Association (mJOA) score, Neck Disability Index (NDI) score, and SF-36 physical component summary (PCS) score. Linear regression models were created to determine the independent effects of type and timing of postsurgical occupational therapy (OT) and physical therapy (PT) on outcomes. A total of 66 patients were included in the analysis. Multivariate regression analysis showed that postsurgical OT was associated with significantly greater improvement in 12-month SF-36 PCS scores (p = 0.009) and mJOA scores (p = 0.019). In the subset of patients who received therapy, delayed therapy (> 42 days after surgery) compared to early therapy (< 42 days after surgery) was associated with less improvement in SF-36 PCS scores (p = 0.03). Postsurgical outpatient rehabilitation was independently associated with improved postsurgical outcomes within the 1st year after surgery for DCM, and early therapy (< 42 days) was associated with superior outcomes compared to delayed therapy. This is one of the first studies to use a prospective database to demonstrate an independent effect for postsurgical rehabilitation on outcomes after surgery for DCM.

Adaptation and validation of a Korean version of the speaking up about patient safety questionnaire (KSUPS-Q)

BackgroundSpeaking up by healthcare providers is an essential assertive communication strategy for ensuring patient safety and preventing incidents. However, more is needed to know about speaking up and instruments to assess it in the Korean context. Therefore, we assessed the psychometric properties of the Korean version of the Speaking Up about Patient Safety Questionnaire (KSUPS-Q) for measuring speaking up-related behavior and climate among nurses.MethodsThe translation and adaptation process followed the guidelines of the International Society for Pharmacoeconomics and Outcomes Research and the World Health Organization. Content validity was assessed by a six-member expert panel using the content validity index. In total, 314 nurses participated in an online survey to examine the psychometric properties. Internal consistencies were tested using Cronbach’s alpha and McDonald’s omega. Confirmatory factor analyses were conducted to examine the subscales’ construct. The convergent validity of the speaking up-related climate scale was assessed by testing correlations with teamwork and safety climate domains of the Safety Attitudes Questionnaire. In addition, we investigated the convergent validity of the speaking up-related behavior scale by examining its correlation with the climate scale.ResultsThe reliability of the 11-item behavior scale was satisfactory. Confirmatory factor analysis confirmed that a three-subscale model (perceived concerns, withholding voice, and speaking up) was appropriate (CFI = 0.98, TLI = 0.98, and SRMR = 0.05). Furthermore, the 11-item climate scale demonstrated satisfactory internal consistency. A three-subscale model (psychological safety, encouraging environment, and resignation) was confirmed (CFI = 0.98, TLI = 0.97, and SRMR = 0.05). The convergent validity of the climate scale was verified based on correlations with the teamwork (r = 0.68, p < 0.001) and safety climate (r = 0.68, p < 0.001) domains of the Safety Attitudes Questionnaire. In addition, speaking up-related behavior and climate showed a significant association, indicating that the behavior scale is conceptually valid.ConclusionsThis study demonstrates that the KSUPS-Q is a valid and reliable instrument in Korea. This instrument can help nurse managers simultaneously monitor the behavior and climate of their organizations and evaluate the outcomes of interventions to enhance speaking up. Future research is needed to explore diverse factors contributing to speaking up, including clinical roles, team relationships, and supportive culture, to identify areas requiring further improvement.

A Mixed-Methods Evaluation of a Project ECHO Program for the Evidence-Based Management of Sickle Cell Disease.

Sickle cell disease (SCD) is a group of chronic, genetic disorders of the red blood cells with significant gaps in access to evidence-based clinical care. Sickle Treatment and Outcomes Research in the Midwest (STORM), a provider network, utilized Project ECHO (Extension for Community Health Outcomes), a telementoring model, to deliver evidence-based education about SCD management. The purpose of this mixed-methods study is to evaluate the utility of Project ECHO as an educational strategy for healthcare providers treating children and adults with SCD. Annual evaluations were administered to STORM TeleECHO participants from 2016 to 2021. Survey data showed a statistically significant change in self-reported provider confidence in the ability to provide care for adult patients with SCD; identify suitable candidates for disease-modifying therapies; and confidence to prescribe disease-modifying therapies. Participants who attended at least 10 sessions were invited to participate in a semi-structured interview. Qualitative data were analyzed using thematic analysis and several themes emerged about the benefits, including (1) increased confidence, (2) integrated best-practice care, (3) connection to provider network and access to experts, (4) high-quality educational presentations and (5) opportunities for collaboration and a sense of community. This suggests that Project ECHO is accessible and leads to increased confidence in providers caring for individuals with SCD. Overall, participant knowledge gains successfully demonstrated the utility of Project ECHO as an educational resource for providers.

Improving Data Infrastructure for Person-Centered Outcomes Research on Intellectual and Developmental Disabilities.

Individuals with intellectual and developmental disabilities (IDD) continue to experience disparities in health and well-being despite improved provisions of person-centered care. Patient-centered outcomes research (PCOR) translates evidence into practice for meaningful outcomes. This piece describes findings from an environmental scan and stakeholder outreach to identify and prioritize opportunities to enhance IDD PCOR data infrastructure. These opportunities include developing a standardized research definition; advancing data standards for service systems; improving capture of IDD at point of care; developing standardized outcome measures; and encouraging Medicaid data use for IDD research. Within this piece, we discuss the implications of addressing data gaps for enhanced research. While the identified activities provide a path towards advancing IDD PCOR data infrastructure, collaborative efforts between government, researchers, and others are paramount.

Factors impacting community living outcomes among former long-term nursing home residents using the interdependence-Human Activity Assistive Technology (i-HAAT) model

ABSTRACT Despite an increased application of social theory in assistive technology (AT) outcomes research, there continues to be a gap in integrating AT conceptual models in research design, data analysis, and results interpretation. This paper merged two preexisting AT models, the Human Activity Assistive Technology model (HAAT) and the interdependence frame for AT into a novel framework, the interdependence-HAAT model (i-HAAT). This model was used to examine the outcomes of former long-term nursing home residents using AT. The model was also used as a framework to facilitate quantitative variable identification and categorization, emphasize the interconnectivity between domain variables, and explore the infrastructural supports necessary for the successful community reintegration of deinstitutionalized AT users. Meaningful integration of theory into practice is the essential next step in generating socially responsive research that addresses AT consumer needs and moves the field forward.