Comprehensive Outcome Measures Research Articles

Development of a novel Patient-Reported Outcome Measure (PROM) for adults with an Inherited Cardiac Condition (ICC)

Abstract Background Research on the quality-of-life (QoL) among patients with inherited cardiac conditions (ICC) is limited. Existing evidence from a systematic review indicates that most studies rely on generic measures of health-related QoL, which may not adequately capture ICC-specific factors. The current study aims to develop a disease-specific patient-reported outcome measure to address this gap. Methods Using a qualitative study design, we first conducted focus groups until data saturation was achieved (n=15). Additionally, an expert panel of healthcare professionals was interviewed to ascertain their perspectives on patient-centered care and to evaluate face validity. Transcripts of all focus groups and interviews were analyzed thematically using Atlas.ti, qualitative analysis software, to identify concepts and formulate survey items for the initial instrument. We used the ‘Centre for Health Promotion’ QoL model, consisting of three domains- Being, Belonging, and Becoming- as the theoretical framework for our analysis. Results Our analysis revealed alignment with specific QoL domains of the overarching framework and identified a gap in genetic-specific domains. A novel overarching theme, genetic well-being, was identified, encompassing specific constructs related to future uncertainty, reproductive concerns, and the anticipation of disease development, thus enriching the conceptualization of QoL in the context of inherited cardiac conditions. The discussion will include an exploration of the face validity of the draft instrument. Conclusion Patients diagnosed with an inherited cardiac condition (ICC) face a spectrum of challenges originating from both disease-related stressors and hereditary factors alike. Recognizing that relying solely on objective clinical assessment may fail to capture the full impact of the disease, there has been an increasing focus on incorporating patient-reported measures into disease evaluation. This qualitative study contributes to developing a comprehensive patient-reported outcome measure tailored to individuals with ICC.PROM development study

First Contact Physiotherapy: A 4-Year Service Evaluation of UK Primary Care Data.

The First Contact Physiotherapist (FCP) role offers patients direct access to musculoskeletal (MSK) specialists in primary care settings and is designed to reduce GP workload while providing high-quality care. Despite positive early evaluations of FCP services, there remains a need for up-to-date assessments of their impact. To evaluate the FCP model of care implemented in an NHS Primary Care Network (PCN) against pre-defined service objectives. A service evaluation was conducted using data from April 2020 to March 2024. Key performance indicators were based on national FCP evaluation criteria. Data included appointment utilisation, wait times, referral patterns, patient and staff satisfaction surveys, and audit results from clinical data. Over 4years, 12,185 patients were seen. Of these, 69% of patients were seen as true first contacts. The majority of patients (86.4%) were managed within primary care, with a referral rate of 8.5% to outpatient physiotherapy and 5.1% to orthopaedics. Patient satisfaction was high, with 82% rating their FCP experience as excellent or outstanding. The FCP service successfully met its objectives by reducing GP workload and providing effective care. However, there was an increase in outpatient physiotherapy referrals over the 4-year period. Staff satisfaction was generally positive, though some highlighted concerns about appointment duration and workload. This evaluation demonstrates that FCP services provide a viable solution for managing MSK conditions in primary care. Future research should explore the most effective MSK service delivery models and incorporate digital solutions for comprehensive outcome and experience measures.

Development and validation of the 5-Dimension Comprehensive Assessment Scale (5DCAS) for assessing physical function and health in axial spondyloarthritis.

To describe the development and validation of a novel patient reported scale, which is a comprehensive assessment of the physical function and health specific for patients with axial spondyloarthritis (axSpA). This is a multiphase, mixed methods study. Based on opinion collection and discussions of multidisciplinary consensus meetings and patients, an initial item pool covering all of the ranges of functioning was generated. The item optimization, model fit, response category functioning, differential item functioning, reliability, structure validity, and unidimensionality were tested by confirmatory factor analysis and Rasch measurement theory framework. After the consensus meeting and the two rounds of surveys in patients with axSpA, the initial pool of 135 items was reduced to 25 items formed in five dimensions, which exhibited preferable item reliability, item fit, and person fit to the Rasch model. The Five-Dimensional Comprehensive Assessment Scale (5DCAS) had the best reliability and validity (Kaiser-Meyer-Olkin was 0.919, and the standardized Cronbach's α coefficient was 0.932). The final version of 5DCAS had good unidimensionality, and the Person Separation Index ranged from 0.77 to 0.85. 5DCAS significantly correlated with ASAS-HI, SF-36, BASFI, and disease activity with p values of < 0.001. 5DCAS is a novel patient-reported outcome specific to axSpA, and it forms five dimensions providing a linear sum score of 25 items. 5DCAS comprehensively and significantly represents the physical function and health status of patients with axSpA, although its performance needs further validation in future clinical practices. Key Points • The primary goal in the management of axial spondyloarthritis is to maximize health-related quality of life. Except for the current instruments of ASAS-HI, BASFI, or SF-36, the heterogeneous clinical symptoms and rapid updated treat-to-target concept require a new instrument which can comprehensive and significant evaluate the changes of physical function and health-related quality of life due to disease. • 5DCAS is a novel patient-reported outcome specific to axSpA, and it forms five dimensions providing a linear sum score of 25 items, which contained aspect of pain involvement, spine mobility, global body performance and activity, social participation and environment, and mental health. All of the items were set to a 4-point semantic rating scale measuring severity, frequency, or interference from score 0 to 3. Total 5DCAS score ranges from 0 to 75; higher scores represented greater symptom burden and worse physical function. • 5DCAS is a comprehensive, multidisciplinary, and convenient disease outcome measurement specific for axSpA. It provides a new evaluation instrument in clinical trial and treat-to-target clinical remission for patients and physicians, and also provides a sensitive and accurate assessment standard for optimized health benefits.

The Cross-Cultural Validation of Neuropsychological Assessments and Their Clinical Applications in Cognitive Behavioral Therapy: A Scoping Analysis.

The present study explores the cross-cultural validation of neuropsychological assessments and their clinical applications in cognitive behavioral therapy (CBT), focusing on culturally adapted CBT (CA-CBT) across diverse populations and settings. Following the PRISMA guidelines, a comprehensive search was conducted in multiple academic databases, including PubMed, PsycINFO, Scopus, and Web of Science. Keywords related to cognitive behavioral therapy, cultural adaptation, and specific populations were used. The inclusion criteria encompassed randomized controlled trials (RCTs) and pilot studies that assessed CA-CBT for various mental health conditions. The review included studies involving Chinese Americans, Latino caregivers, Syrian refugees, Jordanian children, Malaysian Muslims, Afghan refugees, Iraqi women, Japanese children and adolescents, and Tanzanian and Kenyan children. CA-CBT demonstrated significant effectiveness in reducing symptoms of depression, anxiety, PTSD, and psychosis. For instance, research has shown that CA-CBT is more effective than standard CBT in reducing depressive symptoms among Chinese Americans and in significantly lowering PTSD symptoms in Syrian refugee women. This method has been well-received and is feasible for use in diverse populations, such as Jordanian children and Afghan refugees. The long-term benefits are promising, with sustained improvements being reported in various studies. Additionally, digital and remote delivery methods have demonstrated potential for expanding the accessibility of CA-CBT. CA-CBT is a valuable and effective intervention for diverse cultural populations, significantly improving mental health outcomes. However, future research must address limitations such as small sample sizes, short follow-up periods, and variability in assessment tools. Future studies should include larger and more diverse sample sizes, longer follow-up periods, rigorous control groups, and comprehensive outcome measures to further validate and enhance the application of CA-CBT across different cultural contexts.

Development and Validation of a Simple and Multifaceted Instrument, Chronic Constipation-Therapeutic Efficacy and Satisfaction Test, for the Clinical Evaluation of Patients with Chronic Constipation

Introduction: This study evaluated the psychometric properties of the newly developed chronic constipation-therapeutic efficacy and satisfaction test (CC-TEST) among patients with chronic constipation. Methods: Japanese patients with moderate or severe chronic constipation underwent a 4-week remedy. The baseline, 2-week, and 4-week assessments included the CC-TEST, Constipation Scoring System (CSS), Medical Outcome Study Short Form-8 Health Survey (SF-8), and Hospital Anxiety and Depression Scale (HADS). The CC-TEST comprises three domains: (1) symptoms; chronic constipation symptom severity (seven items), defecation status (five items), (2) impact for daily life; dissatisfaction with daily life level (DS; four items), and (3) therapeutic response; therapeutic efficacy measured by patients and medication compliance (four items). Results: Of 201 eligible patients at baseline, 110 completed the 4-week treatment and the survey responses. Cronbach’s α values for the stool, defecation, and abdominal symptom subscales, as well as the total symptom score and DS subscale, showed good internal consistency reliability (0.72–0.80). Pearson’s r for comparisons between corresponding items (CC-TEST symptoms with CSS, and CC-TEST DS with SF-8 physical and mental component summary scores) was significant. After 4 weeks, scores for symptoms, defecation status, and DS items/subscales notably decreased, with a significant effect size (p < 0.005, Cohen’s d; 0.30–1.16). Statistically significant differences emerged between treatment responders and nonresponders using the three responder definitions, in changes in scores for most CC-TEST symptoms, defecation status, and DS items/subscales (p < 0.05). Conclusion: CC-TEST demonstrates commendable reliability, convergent and known-group validity, and responsiveness to treatment effects. As a simple, comprehensive, and versatile patient-reported outcome measure, CC-TEST may be well suited for clinical trials and primary care of Japanese patients with chronic constipation.

Clinical results after surgical treatment for degenerative cervical myelopathy: a retrospective 1-year follow-up descriptive analysis

Background Degenerative cervical myelopathy (DCM) poses a significant challenge globally, often requiring surgical intervention for moderate to severe cases. Choosing between anterior and posterior surgical approaches remains controversial, highlighting the need to consider various factors such as sagittal balance and compression severity. Methods This retrospective cohort study described patients with DCM who underwent surgery at Carlos Van Buren Hospital between 2014 and 2021. Inclusion criteria involved clinical evidence of myelopathy and cervical spinal cord compression at two or more levels, with data collected preoperatively and postoperatively at 12 months. Results Of the 66 patients analyzed, both anterior and posterior approaches demonstrated substantial clinical improvements postoperatively, with 83% of patients showing overall improvement and 59.1% achieving the minimal clinically important difference (MCID) in mJOA scores. Notably, anterior surgeries showed slightly higher rates of MCID achievement and fewer instances of disease progression postoperatively compared to posterior surgeries. Conclusions Our descriptive findings underscore the benefits of both anterior and posterior surgical approaches for DCM, with slight outcome variations. Individualized treatment, considering factors such as clinical symptoms, compression type, and cervical alignment, is crucial. Future research should prioritize comprehensive outcome measures to inform treatment strategies.

The Next Horizon of Drug Development: External Control Arms and Innovative Tools to Enrich Clinical Trial Data.

Conducting clinical trials (CTs) has become increasingly costly and complex in terms of designing and operationalizing. These challenges exist in running CTs on novel therapies, particularly in oncology and rare diseases, where CTs increasingly target narrower patient groups. In this study, we describe external control arms (ECA) and other relevant tools, such as virtualization and decentralized clinical trials (DCTs), and the ability to follow the clinical trial subjects in the real world using tokenization. ECAs are typically constructed by identifying appropriate external sources of data, then by cleaning and standardizing it to create an analysis-ready data file, and finally, by matching subjects in the external data with the subjects in the CT of interest. In addition, ECA tools also include subject-level meta-analysis and simulated subjects' data for analyses. By implementing the recent advances in digital health technologies and devices, virtualization, and DCTs, realigning of CTs from site-centric designs to virtual, decentralized, and patient-centric designs can be done, which reduces the patient burden to participate in the CTs and encourages diversity. Tokenization technology allows linking the CT data with real-world data (RWD), creating more comprehensive and longitudinal outcome measures. These tools provide robust ways to enrich the CT data for informed decision-making, reduce the burden on subjects and costs of trial operations, and augment the insights gained for the CT data.

Comprehensive phenotypic characterization of an allelic series of zebrafish models of NEB-related nemaline myopathy.

Nemaline myopathy (NM) is a rare congenital neuromuscular disorder characterized by muscle weakness and hypotonia, slow gross motor development, and decreased respiratory function. Mutations in at least twelve genes, all of each encode proteins that are either components of the muscle thin filament or regulate its length and stability, have been associated with NM. Mutations in Nebulin (NEB), a giant filamentous protein localized in the sarcomere, account for more than 50% of NM cases. At present, there remains a lack of understanding of whether NEB genotype influences nebulin function and NM-patient phenotypes. In addition, there is a lack of therapeutically tractable models that can enable drug discovery and address the current unmet treatment needs of patients. To begin to address these gaps, here we have characterized five new zebrafish models of NEB-related NM. These mutants recapitulate most aspects of NEB-based NM, showing drastically reduced survival, defective muscle structure, reduced contraction force, shorter thin filaments, presence of electron-dense structures in myofibers, and thickening of the Z-disks. This study represents the first extensive investigation of an allelic series of nebulin mutants, and thus provides an initial examination in pre-clinical models of potential genotype-phenotype correlations in human NEB patients. It also represents the first utilization of a set of comprehensive outcome measures in zebrafish, including correlation between molecular analyses, structural and biophysical investigations, and phenotypic outcomes. Therefore, it provides a rich source of data for future studies exploring the NM pathomechanisms, and an ideal springboard for therapy identification and development for NEB-related NM.

An early warning model for predicting major adverse kidney events within 30 days in sepsis patients.

In sepsis patients, kidney damage is among the most dangerous complications, with a high mortality rate. In addition, major adverse kidney events within 30 days (MAKE30) served as a comprehensive and unbiased clinical outcome measure for sepsis patients due to the recent shift toward targeting patient-centered renal outcomes in clinical research. However, the underlying predictive model for the prediction of MAKE30 in sepsis patients has not been reported in any study. A cohort of 2,849 sepsis patients from the Medical Information Mart for Intensive Care (MIMIC)-IV database was selected and subsequently allocated into a training set (n = 2,137, 75%) and a validation set (n = 712, 25%) through randomization. In addition, 142 sepsis patients from the Xi'An No. 3 Hospital as an external validation group. Univariate and multivariate logistic regression analyses were conducted to ascertain the independent predictors of MAKE30. Subsequently, a nomogram was developed utilizing these predictors, with an area under curve (AUC) above 0.6. The performance of nomogram was assessed through calibration curve, receiver operating characteristics (ROC) curve, and decision curve analysis (DCA). The secondary outcome was 30-day mortality, persistent renal dysfunction (PRD), and new renal replacement therapy (RRT). MAKE30 were a composite of death, PRD, new RRT. The construction of the nomogram was based on several independent predictors (AUC above 0.6), including age, respiratory rate (RR), PaO2, lactate, and blood urea nitrogen (BUN). The predictive model demonstrated satisfactory discrimination for MAKE30, with an AUC of 0.740, 0.753, and 0.821 in the training, internal validation, and external validation cohorts, respectively. Furthermore, the simple prediction model exhibited superior predictive value compared to the SOFA model in both the training (AUC = 0.710) and validation (AUC = 0.692) cohorts. The nomogram demonstrated satisfactory calibration and clinical utility as evidenced by the calibration curve and DCA. Additionally, the predictive model exhibited excellent accuracy in forecasting 30-day mortality (AUC = 0.737), PRD (AUC = 0.639), and new RRT (AUC = 0.846) within the training dataset. Additionally, the model displayed predictive power for 30-day mortality (AUC = 0.765), PRD (AUC = 0.667), and new RRT (AUC = 0.783) in the validation set. The proposed nomogram holds the potential to estimate the risk of MAKE30 promptly and efficiently in sepsis patients within the initial 24 h of admission, thereby equipping healthcare professionals with valuable insights to facilitate personalized interventions.

Traditional herbal medicine use doubled the risk of multi-organ dysfunction syndrome in children: A prospective cohort study.

Traditional herbal medicine (THM) is frequently used in pediatric populations in many low-income countries as a form of healthcare and has been associated with a range of adverse events, including liver toxicity, renal failure, and allergic reactions. Despite these concerns, its impact on multi-organ dysfunction syndrome (MODS) risk has not been thoroughly investigated. This study aimed to investigate the incidence and predictors of MODS in a pediatric intensive care unit (PICU) in Ethiopia, with a focus on the association between THM use and the risk of MODS. This was a single-center prospective cohort study conducted at a PICU in the university of Gondar Comprehensive Specialized hospital, Northwest Ethiopia. The study enrolled eligible patients aged one month to 18 years admitted to the PICU during the study period. Data on demographic characteristics, medical history, clinical and laboratory data, and outcome measures using standard case record forms, physical examination, and patient document reviews. The predictors of MODS were assessed using Cox proportional hazards models, with a focus on the association between traditional herbal medicine use and the risk of MODS. A total of 310 patients were included in the final analysis, with a median age of 48 months and a male-to-female ratio of 1.5:1. The proportion and incidence of MODS were 30.96% (95% CI:25.8, 36.6) and 7.71(95% CI: 6.10, 9.40) per 100-person-day observation respectively. Renal failure (17.74%), neurologic failure (15.16%), and heart failure (14.52%) were the leading organ failures identified. Nearly one-third of patients (32.9%) died in the PICU, of which 59.8% had MODS. The rate of mortality was higher in patients with MODS than in those without. The Cox proportional hazards model identified renal disease (AHR = 6.32 (95%CI: 3.17,12.61)), intake of traditional herbal medication (AHR = 2.45, 95% CI:1.29,4.65), modified Pediatric Index of Mortality 2 (mPIM 2) score (AHR = 1.54 (95% CI: 1.38,1.71), and critical illness diagnoses (AHR = 2.68 (95% CI: 1.77,4.07)) as predictors of MODS. The incidence of MODS was high. Renal disease, THM use, mPIM 2 scores, and critical illness diagnoses were independent predictors of MODS. A more than twofold increase in the risk of MODS was seen in patients who used TMH. Healthcare providers should be aware of risks associated with THM, and educate caregivers about the potential harms of these products. Future studies with larger sample sizes and more comprehensive outcome measures are needed.

Adaptive behavior assessed by Vineland-3 as comprehensive outcome measure in vanishing white matter.

Investigate the results and usability of the Vineland-3 as an outcome measure in vanishing white matter patients. A cross-sectional investigation of the Vineland-3 based on interviews with caregivers, the Health Utilities Index, and the modified Rankin Scale in 64 vanishing white matter patients. Adaptive behavior measured with the Vineland-3 is impaired in the vast majority of vanishing white matter patients and significantly impacts daily life. Typically, the daily living skills domain is most severely affected and the socialization domain is the least affected. Based on the metric properties and the clinical relevance, the standard scores for the daily living skills domain and Adaptive Behavior Composite have the best properties to be used as an outcome measure. The Vineland-3 appears to be a useful outcome measure to explore and quantify complex cognitive, behavioral, and psychiatric impairments affecting daily functioning in vanishing white matter. Further research should address the longitudinal evaluation of this tool and its additional value to standard neuropsychological and clinical examination.

Validating the COVID Check-In: A co-produced online platform enabling integrated care for people with Long COVID

Introduction: ‘Long COVID’ describes the sustained and debilitating symptoms experienced by many people following acute COVID-19 infection. This study builds on previous work by Deakin University and the Western Health COVID-19 Recovery Collaboration (WHCOVRE). In this previous work, a team of 4 health researchers and 6 consumers with Long COVID co-designed the COVID Recovery (or DisCOVeRY) model of care. This model provides a framework for appropriate and effective care by providing an integrated pathway that incorporates existing community supports, tailored to individual consumer need. Consumers receive a comprehensive biopsychosocial assessment using a co-designed patient rated outcome measure (PROM) called the ‘COVID Check-In’ (CCI), the World Health Organisation Disability Assessment Schedule (WHODAS-36), EQ-5D and the 100-point Goal Attainment Scale (GAS). Assessment outcomes determine which clinical stream is offered – self-managed (DisCOVeRY-SM) or intensive rehabilitation (DisCOVeRY-IR).&#x0D; Aim: The aim of this project was to validate the automated component of DisCOVeRY-SM for people with Long COVID. Is the CCI a valid, reliable, relevant and accessible Patient Rated Outcome Measure (PROM) for people with Long COVID?&#x0D; Methods: A quantitative descriptive approach was adopted, providing a psychometric analysis of the validity of the CCI. The CCI was delivered using “Platform O”; a flexible online research tool developed at Deakin University to meet both end-user and researcher needs. The interactive content builder fully integrates with questionnaire applications, online video platforms, animated content, and third-party interactive applications. “Platform O” also includes engagement tools (e.g., star ratings, personalised reminders) and security features to support user testing, continuous quality improvement and communication between end-users and the project team.&#x0D; All Australians meeting the World Health Organisation case description of Long COVID aged over 18 years were eligible to participate. For divergent validity analysis, a separate sample of Australians diagnosed with chronic fatigue syndrome (CFS) aged over 18 years were also eligible to participate. Participants were invited to complete the comprehensive baseline assessment outcome measures only on a single occasion on Platform O. Brief ‘pop’ up questions about the comprehensiveness, relevance and comprehensibility of the CCI were included to evaluate content validity. Correlations between CCI scores, WHODAS-36, EQ-5D and the GAS assessed convergent validity. While Long COVID and chronic fatigue syndrome share some symptoms, they are distinctive syndromes whose differences were used to assess divergent validity.&#x0D; Results: The face and construct validity of the CCI was tested in a small sample (n=20) at Western Health. Further validation is currently underway (n=260 consumers) to ensure its quality prior to broader scale up of the DisCOVeRY-SM, and these results will be reported in this conference paper. &#x0D; Conclusion: The CCI is the first co-produced PROM for people with Long COVID, and specifically reflects their needs and priorities. Rigorous validation of this measure will support its broader dissemination both within and outside of Australia, to enable people with this syndrome to receive integrated, high quality and individually tailored care.

Translation, and validation of Dysphagia Outcome and Severity Scale (DOSS): Swedish version

BackgroundSwallowing dysfunction (dysphagia) significantly impacts patient and medical outcomes. In Sweden, there is no comprehensive outcome measure for dysphagia that incorporates holistic assessment and dysphagia impact on a person’s impairment, function and participation. The Dysphagia Outcome and Severity Scale (DOSS) was developed and validated (in English) and incorporates the World Health Organisation’s (WHO) aforementioned, International Classification of Functioning (ICF) aspects. This study translated then evaluated the validity and reliability of the Swedish version, DOSS-S.MethodTranslation occurred based on WHO recommendations. The Content Validity Index (CVI) of the translated version (DOSS-S) was assessed twice by 11 (multi-professional) dysphagia experts. Criterion validity and rater reliability was calculated using 18 Speech Pathologists assessing patient cases from International Dysphagia Diet Standardization Initiative—Functional Diet Scale (IDDS-FDS) research.ResultsVery high CVI values (0.96–0.99) for the linguistic correlation, and high CVI values (0.84–0.94) for applicability correlation were achieved. High criterion validity of DOSS-S with IDDSI-FDS was demonstrated (rs = 0.89, p < 0.01), with very high inter and intra rater reliabilities (ICC > 0.90).ConclusionThe DOSS-S demonstrated very high validity values, and very high inter and intra rater reliability. This research contributes to improved dysphagia management by providing interprofessional dysphagia clinicians with a validated scale to identify patient progression, communicate dysphagia status between regions and countries, and document patient outcomes using an ICF framework.

Older age at surgery and postoperative leg length discrepancy are risk factors for unfavourable patient-reported outcome measures of knee tumour endoprostheses following resection for musculoskeletal tumour of the lower limb.

To evaluate mid-to long-term patient-reported outcome measures (PROMs) of endoprosthetic reconstruction after resection of malignant tumours arising around the knee, and to investigate the risk factors for unfavourable PROMs. The medical records of 75 patients who underwent surgery between 2000 and 2020 were retrospectively reviewed, and 44 patients who were alive and available for follow-up (at a mean of 9.7 years postoperatively) were included in the study. Leg length discrepancy was measured on whole-leg radiographs, and functional assessment was performed with PROMs (Toronto Extremity Salvage Score (TESS) and Comprehensive Outcome Measure for Musculoskeletal Oncology Lower Extremity (COMMON-LE)) with two different aspects. The thresholds for unfavourable PROMs were determined using anchor questions regarding satisfaction, and the risk factors for unfavourable PROMs were investigated. The thresholds for favourable TESS and COMMON were 64.8 and 70.4 points, respectively. Multivariate analysis showed that age at surgery (p = 0.004) and postoperative leg length discrepancy (p = 0.043) were significant risk factors for unfavourable TESS results, while age at surgery (p < 0.001) was a significant risk factor for unfavourable COMMON-LE results. Following receiver operating characteristic analysis, the threshold for both TESS and COMMON-LE was 29 years of age at surgery. Additionally, a leg length discrepancy of 8.2 mm was the threshold for unfavourable TESS. Patients aged > 29 years at the time of surgery require appropriate preoperative counselling and adequate postoperative physical and socioemotional support. Reconstruction equivalent to the length of the resected bone can reduce the risk of functional disabilities in daily living.

Transitional Care Interventions From Hospital to Community to Reduce Health Care Use and Improve Patient Outcomes

Discharge from the hospital to the community has been associated with serious patient risks and excess service costs. To evaluate the comparative effectiveness associated with transitional care interventions with different complexity levels at improving health care utilization and patient outcomes in the transition from the hospital to the community. CENTRAL, Embase, MEDLINE, and PsycINFO were searched from inception until August 2022. Randomized clinical trials evaluating transitional care interventions from hospitals to the community were identified. At least 2 reviewers were involved in all data screening and extraction. Random-effects network meta-analyses and meta-regressions were applied. The Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines were followed. The primary outcomes were readmission at 30, 90, and 180 days after discharge. Secondary outcomes included emergency department visits, mortality, quality of life, patient satisfaction, medication adherence, length of stay, primary care and outpatient visits, and intervention uptake. Overall, 126 trials with 97 408 participants were included, 86 (68%) of which were of low risk of bias. Low-complexity interventions were associated with the most efficacy for reducing hospital readmissions at 30 days (odds ratio [OR], 0.78; 95% CI, 0.66 to 0.92) and 180 days (OR, 0.45; 95% CI, 0.30 to 0.66) and emergency department visits (OR, 0.68; 95% CI, 0.48 to 0.96). Medium-complexity interventions were associated with the most efficacy at reducing hospital readmissions at 90 days (OR, 0.64; 95% CI, 0.45 to 0.92), reducing adverse events (OR, 0.42; 95% CI, 0.24 to 0.75), and improving medication adherence (standardized mean difference [SMD], 0.49; 95% CI, 0.30 to 0.67) but were associated with less efficacy than low-complexity interventions for reducing readmissions at 30 and 180 days. High-complexity interventions were most effective for reducing length of hospital stay (SMD, -0.20; 95% CI, -0.38 to -0.03) and increasing patient satisfaction (SMD, 0.52; 95% CI, 0.22 to 0.82) but were least effective for reducing readmissions at all time periods. None of the interventions were associated with improved uptake, quality of life (general, mental, or physical), or primary care and outpatient visits. These findings suggest that low- and medium-complexity transitional care interventions were associated with reducing health care utilization for patients transitioning from hospitals to the community. Comprehensive and consistent outcome measures are needed to capture the patient benefits of transitional care interventions.

Measuring population health and quality of life: Developing and testing of the significant quality of life measure (SigQOLM)

Quality of life (QOL) should ideally be determined by a broader spectrum of measurable parameters. This study aims to develop and validate a study instrument that is designed to determine a holistic measure of health and non-health aspects of QOL, and it is called the ‘Significant Quality of Life Measure’ (SigQOLM). This study involves five phases which aim to (i) explore and understand the subject matter content, (ii) develop a questionnaire, (iii) assess its content validity and face validity, (iv) conduct a pilot study, and lastly (v) perform a field-test by using the questionnaire. For the field-testing phase, a cross-sectional study was conducted which elicited responses from healthcare workers via a self-administered survey for all the SigQOLM items. Based on the results, the overall framework of the SigQOLM consists of four elements, 18 domains with 69 items. The element of “Health” is measured by nine domains, while “Relationships”, “Functional activities, and “Survival” are measured by three domains respectively. The SigQOLM has been developed successfully and then validated with a high level of reliability, validity, and overall model fit. Therefore, the SigQOLM will provide researchers and policymakers another viable option to elicit a more comprehensive outcome measure of QOL which shall then enable them to implement specific interventions for improving the QOL of all the people, both healthy or otherwise.

What Aspects of Quality of Life are Important from Palliative Care Patients' Perspectives? A Framework Analysis to Inform Preference-Based Measures for Palliative and End-of-Life Settings.

Preference-based outcome measures are commonly applied in economic analyses to inform healthcare resource allocation decisions. Few preference-based outcome measures have been specifically developed for palliative and end-of-life settings. This study aimed to identify which quality-of-life domains are most important to Australians receiving specialised palliative care services to help determine if the development of a new condition-specific preference-based outcome measure is warranted. In-depth face-to-face interviews were conducted with 18 participants recruited from palliative care services in South Australia. Data were analysed using a framework analysis drawing on findings from a systematic review of international qualitative studies investigating the quality-of-life preferences of patients receiving palliation (domains identified included cognitive, emotional, healthcare, personal autonomy, physical, preparatory, social, spiritual). Participants identified missing or irrelevant domains in the EQ-5D and QLU-C10D questionnaires and ranked the importance of domains. A priori domains were refined into cognitive, environmental, financial, independence, physical, psychological, social and spiritual. The confirmation of the eight important quality-of-life domains across multiple international studies suggests there is a relatively high degree of convergence on the perspectives of patients in different countries. Four domains derived from the interviews are not covered by the EQ-5D and QLU-C10D (cognitive, environmental, financial, spiritual), including one of the most important (spiritual). Existing, popular, preference-based outcome measures such as the EQ-5D do not incorporate the most important, patient-valued, quality-of-life domains in the palliative and end-of-life settings. Development of a new, more relevant and comprehensive preference-based outcome measure could improve the allocation of resources to patient-valued services and have wide applicability internationally.

Kidney Ultrasonography After First Febrile Urinary Tract Infection in Children

Controversy exists on the clinical utility of kidney ultrasonography after first febrile urinary tract infection (UTI), and clinical practice guideline recommendations vary. To determine the prevalence of urinary tract abnormalities detected on kidney ultrasonography after the first febrile UTI in children. The MEDLINE, EMBASE, CINAHL, PsycINFO, and Cochrane Central Register of Controlled Trials databases were searched for articles published from January 1, 2000, to September 20, 2022. Studies of children with first febrile UTI reporting kidney ultrasonography findings. Two reviewers independently screened titles, abstracts, and full texts for eligibility. Study characteristics and outcomes were extracted from each article. Data on the prevalence of kidney ultrasonography abnormalities were pooled using a random-effects model. The primary outcome was prevalence of urinary tract abnormalities and clinically important abnormalities (those that changed clinical management) detected on kidney ultrasonography. Secondary outcomes included the urinary tract abnormalities detected, surgical intervention, health care utilization, and parent-reported outcomes. Twenty-nine studies were included, with a total of 9170 children. Of the 27 studies that reported participant sex, the median percentage of males was 60% (range, 11%-80%). The prevalence of abnormalities detected on renal ultrasonography was 22.1% (95% CI, 16.8-27.9; I2 = 98%; 29 studies, all ages) and 21.9% (95% CI, 14.7-30.1; I2 = 98%; 15 studies, age <24 months). The prevalence of clinically important abnormalities was 3.1% (95% CI, 0.3-8.1; I2 = 96%; 8 studies, all ages) and 4.5% (95% CI, 0.5-12.0; I2 = 97%; 5 studies, age <24 months). Study recruitment bias was associated with a higher prevalence of abnormalities. The most common findings detected were hydronephrosis, pelviectasis, and dilated ureter. Urinary tract obstruction was identified in 0.4% (95% CI, 0.1-0.8; I2 = 59%; 12 studies), and surgical intervention occurred in 1.4% (95% CI, 0.5-2.7; I2 = 85%; 13 studies). One study reported health care utilization. No study reported parent-reported outcomes. Results suggest that 1 in 4 to 5 children with first febrile UTI will have a urinary tract abnormality detected on kidney ultrasonography and 1 in 32 will have an abnormality that changes clinical management. Given the considerable study heterogeneity and lack of comprehensive outcome measurement, well-designed prospective longitudinal studies are needed to fully evaluate the clinical utility of kidney ultrasonography after first febrile UTI.

Patient experiences of a care transition intervention for Veterans to reduce emergency department visits.

Care transition interventions (CTIs) are used to improve outcomes after an emergency department (ED) visit. A recent randomized controlled trial of a Veterans Health Administration (VHA) CTI titled Discharge Information and Support for Patients receiving Outpatient care in the ED (DISPO ED) demonstrated no difference in repeat ED visits. However, changes in health care utilization are not the only measures of a CTI worth evaluation, and there is interest in using patient-centered outcomes to assess CTIs as well. To inform future CTI design and outcome measure selection, the study aims were to understand how patients experienced the CTI and what elements they valued. This was a qualitative study of participants randomized to the intervention arm of the DISPO ED trial using semistructured interviews. The interview guide included questions about clinical health and other issues addressed by the study nurse, the most and least helpful aspects of the intervention, and impacts of the intervention on their perceptions of self-management. Interviews were analyzed using directed content analysis. Our sample comprised 24 participants, with average age of 61 years, 58% male, and 50% Black or African American. We identified six major themes related to (1) experiences during the intervention and (2) elements they valued. Patients reported clinical health coaching recommendations covering a wide range of topics as well as care coordination actions such as appointment scheduling. Valuable elements of the intervention highlighted personal characteristics of the study nurse that promoted a sense of interpersonal connection and empathy in their interactions. Intervention users described assistance with care coordination as well as clinical concerns. We identified aspects that were highly valued by the participants, such as interpersonal support and empathy from the interventionist. These findings suggest the need for more comprehensive nonutilization outcome measures for CTIs to capture the patient's perspective.

Maternal and paternal employment in agriculture and early childhood development: A cross-sectional analysis of Demographic and Health Survey data.

Considerable literature from low- and lower-middle-income countries (LLMICs) links maternal employment to child nutritional status. However, less is known about the role of parental employment and occupation type in shaping child development outcomes. Additionally, little empirical work has examined the mechanisms through which parental occupation influences child outcomes. Our objective was to investigate the associations between maternal and paternal employment (comparing agricultural and non-agricultural employment) and child development and to examine childcare practices and women's empowerment as potential mechanisms. We pooled nine Demographic and Health Surveys (Benin, Burundi, Cambodia, Congo, Haiti, Rwanda, Senegal, Togo, and Uganda) with data on 8,516 children aged 36-59 months. We used generalised linear models to estimate associations between parental employment and child development, child stimulation (number of activities provided by the mother, father, and other household members), child supervision (not left alone or with older child for >1 hour), early childhood care and education programme (ECCE) attendance, and women's empowerment. In our sample, all fathers and 85% of mothers were employed. In 40% of families, both parents were employed in agriculture. After adjusting for child, parental and household confounders, we found that parental agricultural employment, relative to non-agricultural employment, was associated with poorer child development (relative risk (RR) 0.86 (95% CI 0.80, 0.92), more child stimulation provided by other household members (mean difference (MD) 0.26 (95% CI 0.09, 0.42)), less adequate child supervision (RR, 0.83 (95% 0.78, 0.80)), less ECCE attendance (RR 0.46 (95% CI 0.39, 0.54)), and lower women's empowerment (MD -1.01 (95% CI -1.18, -0.84)). Parental agricultural employment may be an important risk factor for early childhood development. More research using more comprehensive exposure and outcome measures is needed to unpack these complex relationships and to inform interventions and policies to support working parents in the agricultural sector with young children.