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The C19-YRS was the first scale reported in the literature for patient assessment and monitoring in Long Covid or Post-COVID syndrome. The scale has demonstrated content validity in a previous COVID-19 follow-up study. The growing number of patients with Post-COVID syndrome required the development of a self-report version (and a digital format) so that the scale can be completed by patients themselves. Individuals with Long Covid and clinicians providing care were involved in iterative changes to the scale. The self-report version of the scale captures symptom severity, functional disability and global health status. The C19-YRS digital format comprises a smartphone application for the patient and a web portal for the clinician to assess, triage and monitor patients remotely. The items have been shown to span all the components of the WHO ICF Framework for health condition.

Background and purpose: The Rasch‐Built Pompe‐Specific Activity (R‐PAct) scale is a patient‐reported outcome measure specifically designed to quantify the effects of Pompe disease on daily life activities, developed for use in Dutch‐ and English‐speaking countries. This study aimed to validate the R‐PAct for use in other countries. Methods: Four other language versions (German, French, Italian, and Spanish) of the R‐PAct were created and distributed among Pompe patients (≥16 years old) in Germany, France, Spain, Italy, and Switzerland and pooled with data of newly diagnosed patients from Australia, Belgium, Canada, the Netherlands, New Zealand, the USA, and the UK and the original validation cohort (n = 186). The psychometric properties of the scale were assessed by exploratory factor analysis and Rasch analysis. Results: Data for 520 patients were eligible for analysis. Exploratory factor analysis suggested that the items separated into two domains: Activities of Daily Living and Mobility. Both domains independently displayed adequate Rasch model measurement properties, following the removal of one item ("Are you able to practice a sport?") from the Mobility domain, and can be added together to form a "higher order" factor as well. Differential item functioning (DIF)‐by‐language assessment indicated DIF for several items; however, the impact of accounting for DIF was negligible. We recalibrated the nomogram (raw score interval‐level transformation) for the updated 17‐item R‐PAct scale. The minimal detectable change value was 13.85 for the overall R‐PAct. Conclusions: After removing one item, the modified‐R‐PAct scale is a valid disease‐specific patient‐reported outcome measure for patients with Pompe disease across multiple countries. [ABSTRACT FROM AUTHOR]

Background: Left ventricular assist device (LVAD) recipients report symptom improvement but find adjusting to life with the LVAD challenging. These challenges are unique, and existing patient‐reported outcome measures (PROMs) do not reflect their experiences. This study aimed to develop a culturally relevant quality of life PROM for use with LVAD recipients in future research, design evolutions and clinical practice. Methods: A three‐stage mixed‐methods approach was used to develop a PROM: stage 1 included group concept mapping (GCM); stage 2 semi‐structured qualitative interviews were conducted with 11 LVAD recipients and 10 clinicians, and a questionnaire was developed using a conceptual framework; and stage 3 used exploratory psychometric analysis of the PROM data using Rasch measurement theory. This paper presents stages 2 and 3. Results: The conceptual framework consisted of four key concepts, including general health, life with the LVAD, equipment and clothing and emotional impact. Statements from interviews and GCM were used to create items for the LVAD quality of life (LVAD‐QoL). Cognitive interviews tested face validity and participant comprehension. Forty‐nine participants were recruited from three UK transplant centres. PROM data were collected and analysed using Rasch analysis. Four items displayed misfit; dependency between item sets was the biggest issue (57/485 pairwise differences). After restructuring and dealing with item misfit, the LVAD‐QoL conformed to the Rasch model, supporting the psychometric properties and quality of the LVAD‐QoL. Conclusions: Using a mixed‐methods approach ensured the development of a robust and psychometrically sound tool for research, design evolution and clinical practice with LVAD recipients. [ABSTRACT FROM AUTHOR]

Background The importance of patient-reported outcome measurement in chronic kidney disease (CKD) populations has been established. However, there remains a lack of research that has synthesised data around CKD-specific symptom and health-related quality of life (HRQOL) burden globally, to inform focused measurement of the most relevant patient-important information in a way that minimises patient burden. The aim of this review was to synthesise symptom prevalence/severity and HRQOL data across the following CKD clinical groups globally: (1) stage 1-5 and not on renal replacement therapy (RRT), (2) receiving dialysis, or (3) in receipt of a kidney transplant. Methods and findings MEDLINE, PsycINFO, and CINAHL were searched for English-language cross-sectional/longitudinal studies reporting prevalence and/or severity of symptoms and/or HRQOL in CKD, published between January 2000 and September 2021, including adult patients with CKD, and measuring symptom prevalence/severity and/or HRQOL using a patient-reported outcome measure (PROM). Random effects meta-analyses were used to pool data, stratified by CKD group: not on RRT, receiving dialysis, or in receipt of a kidney transplant. Methodological quality of included studies was assessed using the Joanna Briggs Institute Critical Appraisal Checklist for Studies Reporting Prevalence Data, and an exploration of publication bias performed. The search identified 1,529 studies, of which 449, with 199,147 participants from 62 countries, were included in the analysis. Studies used 67 different symptom and HRQOL outcome measures, which provided data on 68 reported symptoms. Random effects meta-analyses highlighted the considerable symptom and HRQOL burden associated with CKD, with fatigue particularly prevalent, both in patients not on RRT (14 studies, 4,139 participants: 70%, 95% CI 60%-79%) and those receiving dialysis (21 studies, 2,943 participants: 70%, 95% CI 64%-76%). A number of symptoms were significantly (p < 0.05 after adjustment for multiple testing) less prevalent and/or less severe within the post-transplantation population, which may suggest attribution to CKD (fatigue, depression, itching, poor mobility, poor sleep, and dry mouth). Quality of life was commonly lower in patients on dialysis (36-Item Short Form Health Survey [SF-36] Mental Component Summary [MCS] 45.7 [95% CI 45.5-45.8]; SF-36 Physical Component Summary [PCS] 35.5 [95% CI 35.3-35.6]; 91 studies, 32,105 participants for MCS and PCS) than in other CKD populations (patients not on RRT: SF-36 MCS 66.6 [95% CI 66.5-66.6], p = 0.002; PCS 66.3 [95% CI 66.2-66.4], p = 0.002; 39 studies, 24,600 participants; transplant: MCS 50.0 [95% CI 49.9-50.1], p = 0.002; PCS 48.0 [95% CI 47.9-48.1], p = 0.002; 39 studies, 9,664 participants). Limitations of the analysis are the relatively few studies contributing to symptom severity estimates and inconsistent use of PROMs (different measures and time points) across the included literature, which hindered interpretation. Conclusions The main findings highlight the considerable symptom and HRQOL burden associated with CKD. The synthesis provides a detailed overview of the symptom/HRQOL profile across clinical groups, which may support healthcare professionals when discussing, measuring, and managing the potential treatment burden associated with CKD. Protocol registration PROSPERO CRD42020164737., Author(s): Benjamin R. Fletcher 1, Sarah Damery 2, Olalekan Lee Aiyegbusi 1,2,3, Nicola Anderson 1,4, Melanie Calvert 1,3,5, Paul Cockwell 1,4,6, James Ferguson 1,3, Mike Horton 7, Muirne C. S. [...]

Introduction: Telemedicine is being adopted for postoperative surveillance but requires evaluation for efficacy. This study tested a telephone Wound Healing Questionnaire (WHQ) to diagnose surgical site infection (SSI) after abdominal surgery in low- and middle-income countries. Method: A multi-centre, international, prospective study was embedded in the FALCON trial; a factorial RCT testing measures to reduce SSI in seven low- and middle-income countries (NCT03700749). It was conducted according to a pre-registered protocol (SWAT126) and reported according to STARD guidelines. The reference test was in-person review by a trained clinician at 30 postoperative days according to US Centres for Disease Control criteria. The index test was telephone administration of an adapted WHQ at 27 to 30 postoperative days by a researcher blinded to the outcome of in-person review. The sum of item response scores generated an overall score between 0 and 29. The primary outcome was the diagnostic accuracy of the WHQ, defined as the proportion of SSI correctly identified by the telephone WHQ, and summarized using the area under the receiving operator characteristic curve (AUROC) and diagnostic test accuracy statistics. Results: Patients were included from three upper-middle income (396 patients, 13 hospitals), three lower-middle income (746 patients, 19 hospitals), and one low-income country (54 patients, 4 hospitals). 90.3% (1088 of 1196) patients were successfully contacted. Those with non-midline incisions (adjusted odds ratio: 0.36, 95% c.i. 0.17 to 0.73, P=0.005) or a confirmed diagnosis of SSI on in-person assessment (odds ratio: 0.42, 95% c.i. 0.20 to 0.92, P=0.006) were harder to reach. The questionnaire correctly discriminated between most patients with and without SSI (AUROC 0.869, 95% c.i. 0.824 to 0.914), which was consistent across subgroups. A representative cut-off score of ≥4 displayed a sensitivity of 0.701 (0.610-0.792), specificity of 0.911 (0.878-0.943), positive predictive value of 0.723 (0.633-0.814) and negative predictive value of 0.901 (0.867-0.935). Conclusion: SSI can be diagnosed using a telephone questionnaire (obviating in-person assessment) in low resource settings. Lay summary: A wound infection happens when germs enter the cut made in your body by a doctor when you are operated on. Germs are small organisms that cannot be seen by your eyes, but they can cause problems in the healing of the cut. Infection is the most common problem after surgery and can delay you getting out of hospital and back to normal life. The current way to check whether you have an infection is for a doctor or nurse to look at the cut made on your tummy and see how it is healing. For example, a doctor may check if the cut has a green liquid oozing from it or if the area of the wound is red or swollen. A month after you leave hospital, a doctor may ask you to come back for a follow-up visit. However, this will require you to travel to hospital and take a day off work or away from your family, and can be expensive and time-consuming if you travel far. We wanted to find out if talking to a doctor over the phone would work as well as you travelling to hospital to show the wound to a doctor or nurse in person. To do this, we asked over 1000 patients who had recently undergone surgery to be checked using both methods—to take a phone call from one doctor and be checked in person by a different doctor. We were able to compare the phone follow-up and in-person check to see if the doctors came to a different conclusion. We also looked at whether patients were able to receive a phone call at home and their experience of the process. For most patients, the phone call from a doctor was just as good at seeing if a patient had an infection as a face-to-face check-up by a doctor. However, the phone call was not perfect all the time, particularly for patients with very mild infections. Most patients were able to receive the phone call after a few tries and all patients were very happy with the process. As an international research team, we are now trying new ways to improve the phone call, including looking at the wound over video if possible. A phone call to check how your wound is healing can now be used as a substitute for a face-to-face check-up by a doctor. If you have any worries about your wound after the phone call you should still seek help from a doctor or nurse. We hope that the phone call will be more convenient for patients like you to avoid travelling back to hospital and taking time away from your work and family. This collaborative international study within a trial demonstrated feasibility and high diagnostic accuracy of a telephone pathway for remote post-discharge wound assessment after major abdominal surgery for patients in 7 low and middle-income countries. [ABSTRACT FROM AUTHOR]

This paper explains some design and architecture decisions around the GEODNET network and the GeoDAO decentralized autonomous organization, which aims to create and operate a truly decentralized public GNSS reference sensing network. This paper covers the motivation of the network, the capabilities of current and future reference stations, the blockchain and GEOD token mechanics, and how the network powers applications ranging from climate change monitoring to real-time centimeter-accurate positioning. [ABSTRACT FROM AUTHOR]

The letter to the editor discusses the development of the Upper Extremity Functional Scale for Prosthesis Users (UEFS-P) and highlights discrepancies between qualitative and quantitative aspects of the scale. The authors suggest reclassifying "Did not do" responses as missing data to improve the scale's functionality and relevance. They also recommend involving prosthesis users in the response category structure discussion. The letter aims to provide constructive feedback to enhance the scale's qualitative and quantitative value for prosthesis users. [Extracted from the article]

Many physical activity (PA) interventions implemented to tackle the child obesity epidemic have shown limited effectiveness, possibly due to a lack of consideration of potential stress that accompanies behavior adaptation and the automatic perseverative cognition that exacerbates the stress (namely rumination). Purpose: The main aim of this paper is to develop and validate the PA-specific Rumination Scale for Children (PARSC) that assesses children's tendencies to engage in repeated negative thoughts about PA (Study 2). Items in the scale were derived from qualitative information about factors that inherently demotivates PA participation (intrinsic barriers) through the lived experience of UK children (Study 1). Methods: For Study 1, pedometry PA data were collected from 143 children (aged 6–10 years). Twenty-one focus groups were formed based on participants' year group, sex and PA level. For PARSC validation (Study 2), 382 children completed the questionnaire twice. Self-report PA, device-based PA, and avoidant coping were also assessed. Results: Study 1—Four overarching themes identified as intrinsic barriers were lack of competence, fear of negative experiences, external constraints and lacking a sense of purpose. Altogether, 10 higher order and lower order themes were used to construct PARSC items. Study 2—From Rasch analysis, PARSC possessed sound internal validity, internal consistency, and test–retest reliability. Self-report PA and avoidant coping were predictive of PA-specific rumination, but not device-based PA. Conclusion: PARSC is a useful tool to identify children ruminative about PA for whom interventions can be designed, with the intrinsic barriers considered, to promote PA behavior adaptation. [ABSTRACT FROM AUTHOR]

Author(s): Guillaume T. Charras (corresponding author) [1]; Justin C. Yarrow [1]; Mike A. Horton [2]; L. Mahadevan [1, 3, 4]; T. J. Mitchison [1] Current models for protrusive motility in [...]