The objective of this study is to assess the psychometric properties and reliability of the Swedish Patient-Reported Outcomes Measurement Information System (PROMIS) item banks for anxiety and depressive symptoms with item response theory analysis and post-hoc computerized adaptive testing in a combined Swedish Child and Adolescent Psychiatry (CAP) and school sample. Participants (n = 928, age 12–20) were recruited from junior and high schools and Child and Adolescent Psychiatry Clinics in the region of Västerbotten. Unidimensionality, local independence, and monotonicity was tested. We fitted a graded response model to the data and tested differential item functioning (DIF) for sex, age group, sample type, and language (Swedish vs. U.S.). Moreover, a post-hoc computer adaptive testing (CAT) simulation was performed. All analysis were made in R. Unidimensionality, local independence, and monotonicity were acceptable. The graded response model yielded acceptable item fit, discriminative, and threshold values for all items in both item banks. DIF for language (Swedish vs. U.S.) was found for two items from the anxiety and one item from the depressive symptoms item banks. A Stocking-lord transformation was used for the items displaying language DIF, and post-hoc CAT simulations were performed. The post-hoc CAT simulation showed reliability around 0.9 for both Swedish and official U.S. item parameters T-scores calibration from within normal limits to severe anxiety and depressive symptoms. The Swedish pediatric PROMIS item banks of anxiety and depressive symptoms are appropriate to assess mild to severe symptoms of anxiety and depressive symptoms in Swedish school- and CAP samples.

The purpose of this study was to translate and validate a questionnaire to be used by children with chronic diseases during procedures. Specific research questions were as follows: Is the translated versions reliable? Is there a correlation between VCM and another questionnaire measuring discomfort to enhance the validity of VCM? The three versions of Visual CARE measure (VCM) were translated following the principles of good practice for translation and cultural adaptation of patient-reported outcome measures, according to the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Cognitive debriefing interviews with children, parents, and healthcare professionals were carried out. The correlation between empathy and discomfort was evaluated using DISCO-RC. The final versions of VCM were administered to children and their parents after a needle procedure or a nasal tube insertion. The Cronbach's alpha was 0.89 for the 5Q version, 0.93 for the 10Q version, and 0.96 for the 10Q-Parent version, which implies high internal consistency. The intra-class correlation was 0.623 for VCM 5Q, with a mean difference of 1.35 and an ICC of 0.767 for VCM 10Q, with a mean difference of 1.17. This is considered a good agreement between children's and their parents' assessments. A significant difference in the children's reports could be seen when experiencing high discomfort as opposed to low discomfort. CONCLUSION:VCM is a useful Patient-Reported Experience Measure (PREM) that can help enhance the quality of care for children in a paediatric setting by capturing their perception of the empathy shown. WHAT IS KNOWN:• Parents' by-proxy reports are not always aligned with children's self-reports. In healthcare situations, children can be hurt when they are ignored. • Research shows that empathic encounters relieve distress, improve the relationship between the patient (who could be a child) and carer, and create an open, trusting relationship. WHAT IS NEW:• This study shows that all three versions of the Visual CARE Measure are valid for assessing children's experience of empathy shown by nurses during a procedure.. • This is one of the first studies that confirms the correlation between children's experience of nurses' levels of empathy and the child's discomfort. • This study shows that the Visual CARE Measure can support the evaluation of children's rights with regards to communication in a clinical context.

Translation teams conducting translation and cultural adaptation find it paramount to properly describe concepts of items within clinical outcome assessments (COAs). To minimize potential threats to linguistic/conceptual equivalence, these teams must understand the concepts a COA intends to measure. This research provides recommendations for the process of developing concept definitions in general, as well as specific recommendations on who should be involved in the process and what a concept definition document should contain. The Concept Definition Working Group of the International Society for Quality of Life Research (ISOQOL) Translation and Cultural Adaptation Special Interest Group (TCA-SIG) carried out a literature review and a survey of 20 professionals working in the area of translation and linguistic validation of COAs. The Working Group based recommendations on a combination of survey results and consensus building via online meetings. Translation teams should develop concept definitions during the preparation phase of the translation process, assuming they do not already exist, and include COA developers and project managers with experience in linguistic validation and conceptual analysis of COAs. The Working Group recommends that concept definitions consist of information related to the therapeutic area being studied, information related to the COA development process, definitions of concepts and domains, as well as elaboration of colloquialisms and acceptable/unacceptable translation alternatives. We recommend centralized distribution of concept definitions. Concept definitions guide stakeholders and ensure all parties align on the intended meaning of items being translated. While experts have made recommendations for best practices around translation and linguistic validation methodology, they have not clearly delineated the process of defining concepts. The Concept Definition Working Group of the ISOQOL TCA-SIG has therefore developed a set of recommendations for the process of defining concepts. With these recommendations the Working Group intends to standardize the development of concept definitions with the goal of enhancing conceptual equivalence across translations to support data pooling and provide confidence that clinical trial data are comparable, interpretable, and can be relied upon in evaluating clinical benefit of treatments.

INTRODUCTION:Being stigmatized because of one's weight can pose physical, mental, and social challenges. While weight stigma and its consequences are established throughout Europe, North America, and Australasia, less is known about weight stigma in other regions. The objective of this study was to identify the extent and focus of weight stigma research in Latin America, Asia, the Middle East, and Africa.METHODS:A scoping review of weight stigma research in Latin America, Asia, the Middle East, and Africa was conducted. SCOPUS and PsychINFO databases were searched, and weight stigma experts were contacted to identify relevant literature. Sources were classified based on country/region, population, setting, and category of weight stigma researched.RESULTS:A total of 130 sources were identified from 33 countries and territories. Results indicate that weight stigma has been investigated across populations and settings, mainly focusing on manifestations of weight stigma through experiences, practices, drivers, and personal outcomes of these manifestations.CONCLUSIONS:Weight stigma is a developing global health concern not restricted to Europe, North America, and Australasia. The extent and focus of weight stigma research in Latin America, Asia, the Middle East, and Africa vary between countries and regions leaving several research gaps that require further investigation.

The patient voice is critical to achieving value-based care, improving health outcomes, and advancing medical research. However, a key challenge is how to translate this "voice" into scientifically valid data that can inform evidence-based clinical decisions. One of the biggest barriers is the sheer variety of available patient-reported outcomes (PROs) and patient-reported outcome measures (PROMs) and the associated challenges of translation, validation, implementation, and interpretation, making it difficult to obtain valid and comparable health outcomes. The authors present a harmonized global approach to international standardization of PROs and PROMs. This approach has the potential to accelerate patient-centered care by facilitating the collection of accurate and comparable real-world evidence on health outcomes that matter most to patients. This proposed approach consists of two elements: a data collection process based on a common set of PROs and a state-of-the-art measurement approach based on item response theory. First, there is growing evidence that outcomes such as pain, fatigue, anxiety, depression, sleep disturbance, physical function, and the ability to participate in social roles and activities are relevant for most people, irrespective of their health condition. Measuring these outcomes routinely in all patients could increase outcome comparability and utility for a range of stakeholders. Second, a measurement strategy based on a state-of-the-art psychometric approach — using item response theory (IRT)-based item banks — offers short, flexible, sustainable, and universally applicable PROMs with robust measurement properties and a common measurement scale. The unique integration of these two elements offers the potential to collect comparable PROM data across patients and providers to support shared decision-making, which may lead to better outcomes. The Patient-Reported Outcomes Measurement Information System (PROMIS) is a globally used example of such an approach. The PROMIS Profile measures serve as a resource for measuring a harmonized core set of PROs across medical conditions, languages, and countries. To meet the United Nations Sustainable Development Goal of ensuring healthy lives and promoting well-being for all, at all ages, a collaborative effort is needed to achieve consensus on international standardization of PROs and PROMs to accelerate patient-centered care across health conditions, settings, and countries. The authors propose to routinely measure a core set of broadly relevant PROs in all patients, regardless of their health condition, with universally applicable IRT-based PROMs.

Background and purpose: Pediatric pelvic fractures are uncommon, representing 0.2-3% of total pediatric fractures. The long-term patient-reported outcome in the pediatric population has not been evaluated yet. The purpose of the study was to describe the epidemiology of pelvic and acetabular fractures in pediatric patients including long-term patient-reported outcomes. Patients and methods: The Swedish Fracture Register (SFR) was used to identify all patients aged 6-17 years at injury with a pelvic fracture between 2015 and 2021. All patients were invited to answer Patient-Reported measurement instruments in 2021. Results: The study cohort consisted of 223 patients with a median age at fracture of 15 years and with 62 % boys. 201 sustained a pelvic and 22 acetabular fractures. Falls were the leading cause of fracture, followed by transport accidents. Most fractures (both pelvis and acetabulum) were type A (73 %), and 21 fractures (9 %) could not be classified according to AO. 85 % of fractures were treated non-surgically. All Type C fractures were treated surgically. Seven PROMIS (R) profile domains were completed by 31 % of the sample at a mean follow-up time of 3.5 years after pelvic/acetabular fracture. Most patients had "no concern" or "mild concern" but those who had surgery had an inferior t-score in most domains. Conclusion: Most fractures occurred in older individuals, with falls during sports activities being the most common cause. This raises important questions about prevention strategies. The PROMIS-Pain-Interference scale indicated that the younger the age at fracture, the more pain was reported at follow-up.

At present, there is no internationally accepted set of core outcomes or measurement methods for epilepsy clinical practice. The International Consortium for Health Outcomes Measurement (ICHOM) convened an international working group of experts in epilepsy, people with epilepsy, and their representatives to develop minimum sets of standardized outcomes and outcome measurement methods for clinical practice. Using modified Delphi consensus methods with consecutive rounds of online voting over 12 months, a core set of outcomes and corresponding measurement tool packages to capture the outcomes were identified for infants, children, and adolescents with epilepsy. Consensus methods identified 20 core outcomes. In addition to the outcomes identified for the ICHOM Epilepsy adult standard set, behavioral, motor, and cognitive/language development outcomes were voted as essential for all infants and children with epilepsy. The proposed set of outcomes and measurement methods will facilitate the implementation of the use of patient-centered outcomes in daily practice.

Epilepsy surgery is a therapeutic option for selected children with drug-resistant epilepsy. Children who are surgical candidates have a high prevalence of neurodevelopmental comorbidities. There is a lack of adequately sized prospective studies in a number of rare surgical subgroups, especially of outcome domains such as cognitive level and health-related quality-of-life. In this article, we describe method considerations and a study protocol for a Nordic population-based multi-centre follow-up programme covering seizure as well as non-seizure outcomes in children aged <4 years undergoing resective epilepsy surgery and children aged <= 18 years undergoing hemispherotomy, callosotomy or surgery for hypothalamic hamartoma.

BACKGROUND:Migrants underuse screening opportunities for HIV, hepatitis B, and hepatitis C despite elevated risk factors for contracting these infections. Language barriers are an often given as reasons for limiting access to services. Translation and communication apps increase communication and overall patient satisfaction in the patient-provider relationship. In the development and adoption of new technology, expectations play an important role.OBJECTIVE:This study aimed to explore health care professionals' opinions and attitudes regarding their screening practices with migrants and their expectations for a new communication tool that could improve migrants' screening use.METHODS:In this qualitative study, a purposive (diverse) sampling method was used to invite doctors and nurses who conduct rapid screening tests with migrants from 4 centers of the French Office of Immigration and Integration in 3 geographic regions of France. Semistructured interviews were conducted to survey their opinions on the rapid testing of migrants, the use of telephone interpreters, the concept of health literacy, and their expectations of a new communication tool that could overcome language barriers and promote rapid screening in the new migrant population.RESULTS:In all, 20 interviews were conducted with 11 doctors and 9 nurses with a median age of 58 (range 25-67) years. Participants favored the integration of an innovative communication tool in the context of rapid screening of migrants. However, there were concerns related to the implementation and added value of the tool while migrants were already reluctant to be screened. Expectations were for a tool that would present information in simplified French or a chosen language but also supports a positive attitude toward screening. Health professionals also expressed the wish that the technology could help with the collection of health data.CONCLUSIONS:Feedback from health professionals provides a better understanding of potential formats, characteristics, functions, content, and use of an innovative, digital method to communicate with migrants with limited French proficiency. Findings contribute to the conceptual development of an electronic app and its implementation within the ApiDé study, which aims to validate a digital app to address language barriers to increase the use of screening among migrants with limited French proficiency in France.

Epilepsy surgery is a therapeutic option for selected children with drug-resistant epilepsy. Children who are surgical candidates have a high prevalence of neurodevelopmental comorbidities. There is a lack of adequately sized prospective studies in a number of rare surgical subgroups, especially of outcome domains such as cognitive level and health-related quality-of-life. In this article, we describe method considerations and a study protocol for a Nordic population-based multi-centre follow-up programme covering seizure as well as non-seizure outcomes in children aged <4 years undergoing resective epilepsy surgery and children aged ≤18 years undergoing hemispherotomy, callosotomy or surgery for hypothalamic hamartoma.

The concordance of communication between patients and health professionals is essential to promoting positive health outcomes. However, concordance may be broken where language barriers exist therefore creating a need to use interpretation services. This is the case when rapid diagnostic testing (RDT) of HIV, HBV, and HCV is offered to migrants. The use of interpreters to establish communication with patients having limited French proficiency (LFP) however, is often not used and can be problematic. Despite being offered, interpretation services are frequently underutilised, which makes communication challenging. This problem has not received enough attention in the literature, particularly in a technologically advanced setting where solutions may be found. Our objective was to explore how interpreters are used within the context of medical consultations when RDT for HIV, HBV, and HCV is offered to legal migrants with LFP. A cross-sectional qualitative study was used with a purposive sample that included doctors and nurses who had conducted rapid screening tests with migrants in four centers in France and who had access to interpretive services. Semi- structured interviews explored healthcare providers' (HP) use of interpreters at the OFII. The use of professional or ad hoc interpreters, telephone interpreters, and the equivalence of concepts such as health literacy between the HP and the interpreter were explored. The utility of a new tool to promote communication concordance was evaluated. Twenty interviews were conducted with eleven doctors and nine nurses with a median age of 58 years (25-67 years). All participants had access to interpretive services although many did not solicit them because of 1) unawareness on how to use the services, 2) preconceived notions of the length of time to involve an interpreter and how this would add to consultation times, or 3) the proximity of an ad hoc interpreter. Not using interpreter services could result in RDTs not being offered to immigrants. Subjects such as confidentiality, the embarrassment of a third party's presence, the lack of appropriate training and differing levels of health literacy were also discussed by participants. Insight from HPs allows us to better understand how both telephone and in-person interpretation are used, viewed, and why they are under- used to communicate with limited French language skills patients. Our findings will help us develop a conceptual model for a digital communication tool to overcome barriers with migrant patients with limited French language skills.

BackgroundMigrants are disproportionately affected by HIV, hepatitis B virus (HBV), and hepatitis C virus (HCV). Clinicians, at times, fail to offer rapid diagnostic testing (RDT) for these viruses when a language barrier exists in the patient-clinician relationship, therefore creating missed testing opportunities. Although their effectiveness has been demonstrated elsewhere, conventional, in-person interpreters are costly and underused in practice. Furthermore, clinicians often call upon ad hoc interpreters, which introduces complexities in the clinical relationship. Digital solutions exist to diminish the burden of language barriers; however, the challenges of developing a multilingual and multicultural app have yet to be documented with respect to RDT in the nonfrancophone migrant population in France. ObjectiveOur goal was to design a multilingual app to overcome language barriers, health literacy barriers, and fears related to being tested to promote RDT of HIV, HBV, and HCV in the nonfrancophone migrant population in France. MethodsA combination of qualitative methods, agile development, and user-centered design was used. We conducted 2 focus groups (FGs) with 12 participants, including physicians, nurses, and social workers conducting RDT, as well as 1 modified Delphi survey with 68 participants including physicians and nurses. FGs explored the content (risk factors and medical history), functions (cultural adaptation and instant translation), and interface ergonomics (graphics and font) needed in the app. The Delphi presented 95 content items that the researchers sought to include in the app. ResultsUsing FGs to inform the Delphi survey, we scientifically determined the app’s content consisting of 95 items using expert consensus, developed a mock-up, and conducted initial user testing. We created an app that contains both migrant and clinician interfaces and includes a sociodemographic, risk assessment, health literacy, and testing barrier questionnaires available in 11 languages. Educational content is related to HIV, HBV, and HCV, along with the ability to understand whether the migrant agrees to be tested. ConclusionsThis study allowed us to conceptualize a multilingual app that aims to increase the acceptance of RDT for HIV, HBV, and HCV. The specific features of the Assistant intelligent au dépistage des allophones app were designed to overcome the testing barriers in the nonfrancophone migrant population. The next phase will be an implementation study, as we intend to validate our app.

Aiming to translate, culturally adapt, and psychometrically evaluate the Person-centred Practice Inventory - Staff (PCPI-S) for Portuguese healthcare professionals, this methodological study was conducted sequentially in two phases. Phase I followed the 10-steps recommendations from the ISPOR taskforce for translation and cultural adaptation of patient reported outcome measures. Phase II comprised a quantitative cross-sectional virtual survey of the translated PCPI-S with healthcare professionals, who were reached through snowball sampling from both primary and specialized care settings. The psychometric properties of the PCPI-S were determined by assessing reliability and construct validity. A sample of 304 healthcare professionals participated in Phase II. Ceiling effects were found. The overall internal consistency was excellent (> 0.9). The confirmatory factor analysis showed a good model fit after minor modifications, revealing construct validity, and supporting the theoretical framework. In conclusion, the three-factorial model of PCPI-S adjusted to the studied sample is a valid and reliable instrument to assess the perceptions of healthcare professionals on person-centred practice in various Portuguese clinical contexts. Considering the ceiling effects, the effect of social desirability should be explored.

Migrants underutilize screening opportunities for HIV, Hepatitis B, and Hepatitis C despite elevated risk factors for contracting these infections. Language barriers are an often given as reasons for limiting access to services. Translation and communication apps increase communication and overall patient-satisfaction in the patient-provider relationship. In the development and adoption of new technology, expectations play an important role. To explore the expectations of healthcare professionals (HPs), at the French Office of Immigration and Integration (OFII), for a new communication tool that could improve migrant’ screening utilization. In this qualitative study, a purposive (diverse) sampling method was used to recruit doctors and nurses who conduct rapid screening tests with migrants in four centers in France. Semi-structured interviews explored HP’s experience with migrants at the OFII. Opinions on the rapid testing of migrants, the use of telephone interpreters, the concept of health literacy, and the creation of a new tool to promote rapid screening in the MLPF population were explored. Twenty interviews were conducted with eleven doctors and nine nurses with a median age of 58 years (25-67 years). Participants favored the integration of an innovative communication tool in the context of rapid screening of migrants. However, there were concerns the implementation of the tool, the value of the tool when migrants had a pre-existing reluctance to screening, and the need for wider practice improvements. Expectations were for a tool that would present information but also support a positive attitude towards screening. HPs also expressed the wish that the technology could help with the collection of health data. This research provides a better understand of potential formats, characteristics, functions, content, and use of an innovative, digital method to communicate with MLPF. We found support from HPs for a digital tool. The findings contribute to the conceptual development of an electronic application and its implementation within the ApiDé study, which aims to validate a digital application to address language barriers to increase utilisation of screening among MLPF in France.

Introduction: In young adults, the metabolic syndrome is rare. To better assess the risks for future cardiovascular disease, a cardiometabolic score can be used, ranking the disease risk in each subject. The score is a continuous variable summarising the individual z-scores for waist circumference, blood pressure, blood levels of glucose, triglycerides and HDL-cholesterol. Our main aim was to assess the association between early childhood growth and the cardiometabolic score in young adults. Methods: Study participants were recruited among subjects in the longitudinal population-based GrowUp 1990 Gothenburg study. Those with information on weight and length at birth, as well as weight, height, waist circumference, and parental BMI at ten years of age were invited to participate in a health survey at 18-20 years of age. 513 young adults (female 51%) were included. Multivariable linear stepwise regression analysis was applied. Results: The mean (SD) BMI was 22.2 (3.26) in males and 21.3 (2.69) kg/m² in females; the cardiometabolic score was 0.24 (3.12) and -0.22 (3.18), respectively. A statistically significantly higher score (p<0.001) was seen in individuals with metabolic syndrome, as defined by IDF. After controlling for adult lifestyle features, BMI z-score at ten years of age was significant risk factor in both sexes for an elevated cardiometabolic score in early adulthood, mean(SE) beta 0.47(0.19), p=0.014 in males, 0.82(017) p<0.0001 in females. In males, high maternal BMI and low age at adiposity rebound and in females high birth weight were also associated with a statistically significant risk. Additionally, contraceptive use in females was a risk factor for elevated cardiometabolic score and, in males a high lifestyle related index score showed a protective association with the cardiometabolic score. Conclusion: A high BMI z-score at ten years of age is a risk factor for the cardiometabolic state in young adults, an outcome points to the preventive potential of monitoring BMI in ten-year-old schoolchildren. This finding must however be validated in a new large cohort. Moreover, in young adults in whom metabolic syndrome is rare, a cardiometabolic score seems to be a promising approach and potentially a more powerful tool to detect risks for cardiovascular disease later in life, than using metabolic syndrome categorisation.

BACKGROUND:Stigma contributes to negative health outcomes and amplifies health disparities in epilepsy. This study aimed to investigate associations of perceived stigma with the country of birth and socioeconomic status (SES). METHODS:This is a cross-sectional questionnaire study. Participants were recruited consecutively from three demographically different neurology outpatient clinics in the southwest of Sweden. Participants responded to a questionnaire concerning their epilepsy, country of birth, mother tongue, and different SES-variables. The Neuro-QOL stigma scale and the Jacoby stigma scale were applied to assess stigma and the Hospital Anxiety and Depression Scale (HADS) and PROMIS Mental Health scale were applied to assess mental health. RESULTS:In total 161 adults with epilepsy were included in the cohort. The median Neuro-QOL stigma score was 48.3, and was higher among foreign-born than in native-born participants (foreign-born in non-European country 52.3, in other European country 49.8, and in native-born 47.0, p = 0.003). Other factors associated with Neuro-QOL were seizure frequency last year (≥2 seizures 52.4 compared to 1 seizure 50.9 and no seizures 44.3, p < 0.001), having had seizures in public (yes 50.9 compared to no 44.7, p = 0.035), HADS depression score ≥11 (57.4 compared to 47.8 for score <11 points, p < 0.001), HADS anxiety score ≥11 (53.5 compared to 46.8 for score <11 points, p < 0.001), and lower PROMIS Mental Health score (42.9 for PROMIS < 40 compared to 54.4 for PROMIS > 60, p < 0.01). A stepwise multiple regression analysis indicated that having had seizures the last year increased the average Neuro-QOL stigma score with 5.89 and appeared as the most determining factor for the Neuro-QOL stigma score among the variables investigated. CONCLUSIONS:It is important that the concerns of foreign-born patients are acknowledged and that the focus of seizure control and the detection and treatment of comorbidities are prioritized in the management of epilepsy and perceived stigma.