Development and validation of a drug clinical trial participation feelings questionnaire for cancer patients.

Objective: The study was designed to develop and validate a new drug clinical trial participation feelings questionnaire (DCTPFQ) for cancer patients. Methods: Data collection and analysis involved a combination of qualitative and quantitative methods. There were two phases to this study. Phase Ⅰ involved developing a questionnaire to establish a list of items to be included in the pool: A theoretical framework was constructed based on the transitions theory and the Roper-Logan-Tierney theory. After incorporating a theoretical framework, interviewing participants, and reviewing the literature, 44 items were generated. After a Delphi consultation and a pilot test, 36 items proceeded to item analysis and exploratory factor analysis (EFA), and a four-factor structure with 21 items was formed. Confirmatory factor analysis (CFA), test-retest reliability, criteria-related validity, and internal consistency tests were conducted in phase II to examine the psychometric properties. Results: There were 21 items on the DCTPFQ, ranging from 1 (fully disagree) through 5 (fully agree). As a result of EFA and CFA, the four factors of DCTPFQ could be verified, including cognitive engagement, subjective experience, medical resources, and relatives and friends' support. Test-retest reliability of the DCTPFQ was 0.840, and Cronbach's alpha was 0.934. DCTPFQ is significantly correlated with the Fear of Progression Questionnaire-short form (r = 0.731, p < 0.05) and the Mishel's Uncertainty in Illness Scale (r = 0.714, p < 0.05). Conclusion: The DCTPFQ is a useful tool for measuring the drug clinical trial participation feelings among cancer patients.

The cross-cultural adaptation of Chinese international students: an empirical study on sequential-mediated effects.

Using convenience sampling and snowball sampling methods, data from 432 Chinese international students in 10 countries, including the United Kingdom, South Korea, and the United States, were collected to construct a multivariate sequential-mediated mixed model for cross-cultural adaptation. SPSS 23.0 and AMOS 23.0 were employed for aggregated validity, discriminant validity, and sequential-mediated effects analysis. The study found that: Cultural adaptation stress is negatively correlated with positive coping and positively correlated with negative coping, with negative coping having a significant negative impact during the cross-cultural adaptation process. Positive coping is positively correlated with sports participation, while negative coping is negatively correlated with sports participation. Sports participation is positively associated with in-group identification and negatively associated with out-group bias. In-group identification has a positive impact on cross-cultural adaptation, whereas out-group bias cannot effectively predict cross-cultural adaptation.

How to integrate youth in regional sustainability transformation processes: Tools, structures, and effects.

This study examines young people's involvement in regional sustainability transformation processes based on a real-world experiment in a community of 5700 inhabitants on the southern outskirts of city of Vienna, Austria. The eight-month experiment aimed to explore methods and tools for transdisciplinary co-creation with youth, the impact of structural conditions on their participation and the effects of their integration. Findings highlight the crucial roles of topics relevant to youth, a trusted intermediary like a youth worker, and structural conditions such as political support and resource allocation in enhancing youth engagement success. Collaborative decision making with policymakers and direct communication were also key to effective participation. The real-world experiment laid the groundwork for future participatory methods and had an impact on youth-community relations. It affirmed the role of youth in regional development, with effects that extended beyond the immediate scope of the experiment in terms of time, space, and topic.

Individual Placement and Support and Participatory Workplace Intervention on the Work Participation of People with Disabilities: A Randomised Controlled Trial.

PURPOSE: This study assessed the effectiveness of Individual Placement and Support (IPS), Participatory Workplace Intervention (PWI), and IPS + PWI on work participation and health of people with work disabilities. METHODS: A randomised controlled 2 × 2 factorial trial with 120 clients and an 18-month follow-up was performed. Differences between IPS and no-IPS and between PWI and no-PWI were assessed using log-rank tests and Cox proportional hazards models. RESULTS: In the IPS group, restricted mean survival time (RMST) for sustainable paid employment was 352 days, compared to 394 in the no-IPS group (HR = 1.47, 95% CI = 0.81-2.63). In the PWI group the RMST was 378 days, compared to 367 in the no-PWI group (HR = 0.89, 95% CI = 0.48-1.64). For the secondary outcome 'starting any paid employment, a trial placement, or education' RMST was significantly lower for the IPS group (222 days) than for the no-IPS group (335 days; HR = 1.85, 95% CI = 1.01-3.42). Mental health was significantly lower (worse) in the PWI group (difference -4.07, 95% CI = -7.93 to -0.22) than in the no-PWI group. For all other secondary outcomes, no statistically significant differences were found. CONCLUSION: No statistically significant differences were observed in the duration until starting sustainable employment between IPS and no-IPS, and between PWI and no-PWI. The duration until starting any paid employment, a trial placement, or education was shorter in the IPS group than in the no-IPS group, but further research should explore whether this also increases sustainable employment in the longer term.

Prospective Impacts of Social Participation Activities on Cognitive and Psychopathological Statuses in Community-Dwelling Older Adults.

OBJECTIVES: This study investigated the impact of social activities on cognitive functioning and psychopathological symptoms. METHODS: Participants aged 55 or older were enrolled through communities. Initial measures assessed demographic data, neuropsychological functioning, psychopathological state, and happiness. Social activities were evaluated using a modified 12-item tool, with 3-4 activities as the cutoff. Follow-up after 6-9 months included Mini-Mental State Examination (MMSE), Beck Depression Inventory - II (BDI-II), Beck Anxiety Inventory (BAI), Health Assessment Questionnaire (HAQ), and Patient Health Questionnaire-15 (PHQ-15) measurements. Predictive models for psychiatric and cognitive statuses were built using multiple linear regression, adjusting for baseline conditions. RESULTS: Initially, 516 older individuals enrolled, with 403 undergoing follow-up. During follow-up, the low participation group reported lower MMSE scores, higher BAI scores, and increased PHQ-15 risk. Negative correlations between social activity numbers and PHQ-15 results were found. Engagement in social clubs correlated positively with higher MMSE scores, while regular interactions with one's adult child(ren) were linked to decreased BAI scores. CONCLUSIONS: The quantity of social activities was associated with lower somatic distress. Social club engagement positively influenced cognition, and regular interactions with one's adult child(ren) mitigated anxiety among older individuals. CLINICAL IMPLICATIONS: Enough types of social activities, participating in social clubs, and adequate interactions with children protected against psychopathologies.

Patients' experiences of clinical trial participation involving a product remotely assessing study drug adherence.

Background: The participation of patients in clinical trials is crucial for the development of healthcare. There are several challenges in the recruitment of trial participants with acute medical conditions. The registry-based randomized DAPA-MI clinical trial recruited patients during hospitalization for myocardial infarction and provided study drugs in bottles with smart caps that used wireless technology to transmit monitoring data. This interview study aimed to investigate patients' experience of participation in a clinical trial and their attitude to the new bottle cap technology. Methods: A subset of patients participating in the DAPA-MI trial were recruited from four hospitals in Sweden. Semi-structured interviews were conducted and analysed using manifest content analysis. Results: Video interviews were performed including 21 patients (four women and 17 men). The median age was 59 years (range 44-80). Four categories of patients' experiences were identified. A willingness to contribute consisted of patients' positive attitudes to participation and to be a part of development and research. The perception of information emphasized the value of the oral information as well as the importance of time for reflection. Be in a vulnerable condition highlighted the impaired ability to perceive and remember in the acute medical condition. Adaptation to a new technology described the overall positive experiences of the smart bottle cap to evaluate adherence. Conclusions: Patients' experiences of trial participation were in general positive but some challenges in the acute setting of a myocardial infarction were revealed. The smart bottle cap was well accepted, despite some handling difficulties.

Activity limitations, participation restrictions, and environmental barriers among persons with traumatic spinal cord injury in Kenya.

PURPOSE: Spinal cord injury (SCI) is a life-changing condition, almost always leading to disability. The aim was to determine the period-prevalence of activity limitations, participation restrictions, and environmental barriers in community-dwelling persons with traumatic spinal cord injury (TSCI) in Kenya. METHODS: A cross-sectional survey of 90 community-dwelling adult persons living with TSCI for more than 1 year, recruited from the database of the only specialised rehabilitation, in-patient, facility in Kenya. Modules of the International Spinal Cord Injury community survey (InSCI) used were demographic and injury characteristics; activity and participation; and environmental factors. RESULTS: Most prevalent activity limitations and participation restrictions in the total sample were using public transportation (90%), standing unsupported (83%), getting to destination (76%), and toileting (76%). The top environmental barriers were inadequate finances (96%), inaccessibility of public places (92%), and problems with long distance transportation (90%). Participants with tetraplegia were more affected with activity limitations and participation restrictions than those with paraplegia. CONCLUSION: Functioning problems and environmental barriers are prevalent among adults living with TSCI in Kenya. Although this is the best-case scenario with respect to healthcare services, where individuals received inpatient rehabilitation previously, a need exists to examine the principles and models of rehabilitation and explore the value proposition of primary care/community level rehabilitation to further optimise independence and functioning.

The functioning problems of persons with spinal cord injury (SCI) in Kenya appear to be diverse in nature, which calls for the evaluation of current rehabilitation services and models with the aim of bolstering independence and participation by including evidence-based interventions to standard treatment packages.A high degree of experiencing environmental challenges was found, calling for a whole-of-government approach to enhance inclusivity of persons with SCIs in society.It appears that additional resources or equity measures are allocated to persons with tetraplegia due to their accentuated experience of disability and negative environmental factors.

Harnessing the power of empathy, visual art and patient narratives to improve health literacy: An exploratory study.

ISSUE ADDRESSED: Health-related information can often be overwhelming for consumers, frequently infused with complex medical terminology that is difficult to understand and apply. Historically empathic connection, art and narratives have played key roles in communicating with diverse populations however collectively have received little recognition as a modality to improve health literacy. This study aimed to investigate the empathetic connection between art and patient narratives with a view to improve health literacy in the wider community. METHODS: Nine recently discharged patients and one carer from a regional hospital were paired with 10 tertiary visual arts students for interview. Each narrative was transformed into visual art and exhibited at a community art gallery. The Empathy Quotient (EQ), Medical Outcomes Study 36-item Short Form Health Survey (SF-36) and self-completed questionnaires assessed empathy and functional well-being. Health literacy was evaluated through community response surveys post-exhibition exposure. RESULTS: Student artist participants' EQ Cognitive Empathy (EQ-CE) scores were associated with 'Emotional Reactivity' (EQ-ER) (p = .038). SF-36 scores revealed that role limitations due to physical health and emotional problems had the greatest impact on patient/carer participant's life at the time. The SF-36 General Health domain was associated with the EQ-ER total score (p = .044). Exhibition surveys revealed that 96.9% of observers had learnt something new about illness or injury. SO WHAT?: Although a relatively small study, our findings suggest patient/carer narratives and visual art is a simple yet effective modality for health service organisations to facilitate affective learning and improve health literacy when engaging with consumers.

From identifying patient safety risks to reporting patient complaints: A grounded theory study on patients' hospital experiences.

AIM: To explore how patients with hospital experience construct patient safety, from the identification of a patient safety risk to the decision to file a complaint. BACKGROUND: Patients play an important role in the prevention of adverse events in hospitals, but the ability of patients to act and influence their own safety is still challenged by multiple factors. Understanding how patients perceive risk and act to prevent harm may shed light on how to enhance patients' opportunities to participate in patient safety. DESIGN: The research design of this study is qualitative and exploratory. METHODS: Twelve participants who had experienced Swedish hospital care were interviewed between June 2022 and July 2023. The method of analysis was constructivist grounded theory, focusing on social processes. The COREQ checklist for qualitative research was followed. RESULTS: Four categories were constructed: (1) defining the boundary between one's own capacity and that of the hospital, (2) acting to minimize the impact on one's safety, (3) finding oneself in the hands of healthcare professionals and (4) exploring the boundaries between normality and abnormality of the situation. This process was captured in the core category of navigating the path of least suffering. This illustrated how the participants constructed meaning about patient safety risks and showed that they prevented multiple adverse events. CONCLUSIONS: Provided that participants were able to act independently, they avoided a multitude of adverse events. When they were dependent on healthcare professionals, their safety became more vulnerable. Failure to respond to the participants' concerns could lead to long-term suffering. RELEVANCE TO CLINICAL PRACTICE: By responding immediately to patients' concerns about their safety, healthcare professionals can help prevent avoidable suffering and exhaustive searching for someone in the healthcare system who will take their needs seriously. PATIENT CONTRIBUTION: A member check was performed with the help of one of the participants who read the findings to confirm familiarity.

Relationship between social participation, children's support, and social frailty with falls among older adults in Colombia.

Background: There is limited research on social factors related to falls among older adults. This study assessed the association between falls during the past year with social participation, children's support, relationship with children, and social frailty. Methods: Participants were 17,687 community-dwelling older adults from the SABE (Health, Well-being, and Aging, 2015) Colombia survey. Covariates included sociodemographic characteristics, environmental barriers, psychotropic intake, vision problems, memory loss, multimorbidity, and fear of falling. Results: In multivariate logistic regression analyses, being socially frail (vs. no-frail) was associated with higher odds of falls (OR=1.20; 95% confidence interval [CI], 1.10-1.32). Participating in groups (OR=1.07; 95% CI, 1.03-1.11), helping others (OR=1.04; 95% CI, 1.02-1.06), or volunteering (OR=1.09; 95% CI, 1.01-1.17) were also associated with higher odds of falls. These findings were partly explained because most group participants reside in cities where they are more exposed to environmental barriers. In contrast, receiving help, affection, and company from children (OR=0.95; 95% CI, 0.93-0.97) was associated with lower fall odds than not receiving it. Moreover, having a good relationship with children was associated with lower odds of falls (OR=0.75; 95% CI, 0.66-0.85) compared to an unsatisfactory relationship. Conclusion: Support from children and having a good relationship with them were associated with fewer falls; however, social frailty and participation in social groups were associated with more falls.

Contextualising and challenging under-representation in research in light of Cultural Trauma: a qualitative focus group and interview study.

BACKGROUND: Although underserved populations- including those from ethnic minority communities and those living in poverty-have worse health and poorer healthcare experiences, most primary care research does not fairly reflect these groups. Patient and public involvement (PPI) is usually embedded within research studies in the United Kingdom (UK), but often fails to represent underserved populations. This study worked with patient and public contributors and local community leaders, situated in a socio-economically deprived and ethnically diverse urban area, to explore under-representation in primary healthcare research. METHODS: We undertook a focus group with a purposive sample of 6 members of a Patient and Public Involvement Group (PPIG), and interviews with 4 community leaders (representing Black, South Asian, Roma and socio-economically deprived communities). An iterative analysis process based on template analysis was used. Focus group 1 was rapidly analysed, and a template created. Findings were presented in focus group 2, and the template further developed. The Cultural Trauma concept was than applied to the template to give a wider theoretical lens. In-depth analysis of focus groups and interviews was then performed based on the template. RESULTS: Wider societal and historical influences have degraded trust in academic and healthcare institutions within underserved populations. Along with more practical considerations, trust underpins personal motivations to engage with research. Researchers need to invest time and resources in prolonged, mutually beneficial engagement with communities of importance to their research, including sharing power and influence over research priorities. Researcher reflexivity regarding differential power and cultural competencies are crucial. Utilising participatory methodologies including co-production demonstrates a commitment to inclusive study design. CONCLUSIONS: Re-framing evidence-based medicine to be more useful and relevant to underserved populations with the highest burden of ill health is urgently needed. Lack of representation in primary healthcare research reflects wider societal inequalities, to which Cultural Trauma provides a useful lens. However, there are actions that researchers can take to widen representation. This will ultimately help achieve the goal of increased health equity by enhancing scientific rigour and research generalizability.

THE PROBLEM: People living in poverty, and people from ethnic minority communities may be referred to as 'underserved'. Underserved communities benefit less from health services, and along with other factors, this leads to health inequalities. Primary care research does not include enough people from these communities. This makes the health inequalities  worse. WHAT WE DID: This study looks at why people from underserved communities are not included in research. It also looks at what might help. We had focus group discussions with members of a Patient and Public Involvement Group (PPIG). These are individuals who do not have research expertise, but use their lived experience as patients to influence the research process. This group was formed in 2017, from areas where more people live with social disadvantage. We also interviewed local community leaders. Interviews and focus groups ask open questions, so are a good way to explore what people think about an issue. We found a useful theory about how cultural history affects what people can do. We used this to help us to understand how our findings could improve and widen participation in research within underserved communities. WHAT WE FOUND: We found that trust is very important. There needs to be trust between people and organisations. There are also practical reasons people from underserved communities might not be able to get involved in research. Researchers need to be aware of these things, and work with people from these communities throughout all stages of research. Long term relationships need to develop between institutions and people doing research. Understanding each other's culture and history makes it easier to work together.

Advocating for transportation equity: A critical examination of paratransit service reductions in St. Louis and its impact on health and community social participation.

Social participation is associated with better health, quality of life, physical activity, and engagement in community living and is thus an emerging health priority. Transportation plays an important role in facilitating social participation. Our team recently reported in the Journal of Disability and Health that Missouri-dwelling adults aging with long-term physical disabilities who use paratransit services as their primary transportation mode are more likely to participate in social roles and activities outside the home compared to those who do not use paratransit. In March of 2023, the paratransit company Metro Call-A-Ride that serves St. Louis announced major scale backs to their coverage zones due in part to staffing shortages. This decision has been met with a formal complaint filed to the U.S. Department of Justice as well as protest from the St. Louis disability community and advocates. Thousands of individuals who relied on Call-A-Ride for their routine community outings-to work, grocery stores, or medical appointments, for example-have been affected by the cuts. In this commentary, we will summarize the media coverage this decision has received, including the perspectives of disability rights advocates and individuals who have been directly affected. We will then present an overview of our original research findings in the context of these recent events and a brief synthesis of existing literature on paratransit services in the U.S. The commentary will end with proposed policy, research, and programming solutions for St. Louis's Metro Call-A-Ride and public transportation at large.

Educação popular no SUS: desafios atuais no olhar do Observatório de Educação Popular em Saúde e Realidade Brasileira / Popular education in the SUS: current challenges from the perspective of the Observatory of Popular Health Education and the Brazilian Reality

Resumo Este trabalho se propõe a trazer reflexões e apontamentos para o fortalecimento de políticas públicas estruturantes no Brasil, com foco na Educação Popular em Saúde no Sistema Único de Saúde (SUS), a partir das perspectivas construídas no Observatório de Educação Popular em Saúde e Realidade Brasileira. O Observatório é um espaço profícuo para o compartilhamento de interpretações e experiências de profissionais de saúde e educadores populares sobre a realidade local e realidade brasileira, a partir da ótica da Educação Popular em Saúde. De forma dialógica e participativa, ao longo de seus 2 anos de atividade, o Observatório foi capaz de reunir interpretações sintéticas da Educação Popular em Saúde para as crises que atravessam a história recente do país. De maneira panorâmica, as falas compartilhadas apontam desafios para valorização da abordagem humana na promoção da saúde, com a inclusão e o respeito aos saberes e práticas sociais locais e comunitárias. Além disso, destaca-se a importância da participação social na construção de processos sociais participativos na saúde pública, visando à autonomia do cidadão e à ampliação da dinâmica democrática no Estado brasileiro e em seus equipamentos sociais.

Abstract This paper aims to bring reflections and notes for strengthening Brazilian structuring public policies, focusing on Popular Health Education in the Unified Health System (SUS) from the perspectives built in the Observatory of Popular Health Education and the Brazilian Reality. The Observatory is a valuable space for sharing health professionals' and popular educators' interpretations and experiences about local and Brazilian realities from the perspective of Popular Health Education. During its two years of activity, the Observatory has gathered summary interpretations of Popular Health Education for the crises that traverse the country's recent history in a dialogical and participatory way. In a panoramic view, the shared statements point to challenges for valuing the human approach to health promotion, including respecting local and community knowledge and social practices. Moreover, we underscore the importance of social participation in constructing participatory social processes in public health toward citizen autonomy and expanded democratic dynamics in the Brazilian State and its social equipment.

O que se tem discutido sobre Educação Popular em Saúde nos últimos anos: uma revisão narrativa da literatura / What has been discussed about Popular Health Education in recent years: a narrative review of the literature

Resumo Esta revisão narrativa tem por objetivo analisar a literatura no âmbito da Saúde Coletiva no intento de reconhecer o que se tem discutido em Educação Popular em Saúde (EPS) entre 2019 e 2022. Após busca, 59 artigos foram selecionados, analisados criticamente e separados em seis categorias-síntese: as práticas de educação popular como promotoras de uma visão participativa da saúde; educação popular e a valorização dos saberes e práticas da cultura popular local; a educação popular em saúde como estratégia de apoio à reconstrução social ante aos retrocessos nas políticas públicas; a importância da articulação nacional em educação popular como resposta à sua desvalorização; a educação popular como projeto libertador pensando a formação democrática e luta contra violências institucionais e estruturais; educação popular no processo de formação universitária em saúde. Pôde-se obter importantes resultados que elucidam a importância da EPS no contexto do Sistema Único de Saúde e na formação acadêmica de profissionais da saúde, favorecendo o respeito aos saberes ancestrais e a horizontalidade do cuidado. Ainda, reafirma-se a necessidade de articulação nacional e dialogada com os movimentos populares para o avanço de uma agenda emancipadora e dignificante da saúde no Brasil.

Abstract This narrative review aims to analyze the literature on Collective Health to recognize what has been discussed in Popular Health Education (PHE) from 2019 to 2022. Fifty-nine articles were selected, critically analyzed, and separated into six summary categories: popular education practices as promoters of a participatory vision of health; popular education and the valorization of local popular culture knowledge and practices; popular health education as a strategy to support social reconstruction in the face of setbacks in public policies; the importance of national articulation in popular education as a response to its devaluation; popular education as a liberating project thinking about the democratic formation and the fight against institutional and structural violence; popular education in the university health training process. We achieved significant results that elucidate the importance of PHE within the Unified Health System and the academic education of health professionals, fostering respect for ancestral knowledge and care horizontality. We also reaffirm the need for national articulation and dialogue with grassroots movements to advance Brazil's emancipatory and dignifying health agenda.

Pestes, desenvolvimento e desigualdades / Pests, development and inequalities

Resumo O artigo discute questões sobre o futuro da humanidade ante as ameaças que rondam a saúde das populações, cujo impacto vem se exacerbando no curso das desigualdades em todas as partes do mundo, pari passu o desenvolvimento global no modelo hegemonizado a partir do século passado. A pandemia de COVID-19 foi tomada como um caso que bem ilustra essa dessintonia entre desenvolvimento e desigualdades. Formulam-se perguntas a serem postas em debate sobre a construção do futuro da sociedade mundial, com base na acepção sobre o caráter evolucional da vida no planeta vis-à-vis os males que acometem grandes contingentes populacionais e representam poderosos riscos para esse processo evolutivo. São indagações que apontam para a discussão em torno da participação social na definição e no controle das políticas públicas, em contrapartida à hegemonia dos interesses privados na formulação e execução dessas políticas, tanto nos cenários de cada país como no contexto internacional.

Abstract This article discusses questions concerning the future of humanity in the face of threats to the health of populations, whose impact has been exacerbated in the course of inequalities in all parts of the world, pari passu with global development in the hegemonized model since last century. The COVID-19 pandemic is a good example that illustrates this dissonance between development and inequalities. Questions were formulated to be debated about the construction of the future of world society, based on the understanding of the evolutionary character of life on the planet vis-à-vis the evils that affect large contingents of the population and represent powerful risks for this evolutionary process. These questions call attention to the discussion around social participation in the definition and control of public policies, as opposed to the hegemony of private interests in the formulation and execution of these policies, both in the scenarios of each country and in the international context.

The Impact of the Emotional Responses of Korean Students Participating in School Sports.

Background: Physical education in schools improves students' health, physical strength, and lifelong physical engagement. Therefore, participation must be encouraged. This study aimed to investigate the relationship between emotional responses and participation satisfaction, word-of-mouth (WOM) praise, and WOM activity in students participating in school sports. Few studies have considered WOM praise and activity separately. This study addresses this gap in the literature. Methods: In 2023, a survey of total of 345 students in Gyeonggi-do, Korea, was conducted using convenience sampling. Data processing included factor analysis to verify validity and reliability, correlation analysis, confirmatory factor analysis, and structural equation modeling to test the hypotheses. Results: The results confirmed a relationship between the emotional responses of students and satisfaction with participation. The emotional responses (ventilation [P<0.001], sense of dominance [P<0.001]) significantly affected participation satisfaction, and the latter had a possible causal relationship with WOM praise (P<0.001) and activity (P<0.001). Conclusion: The emotional responses of school sports participants were related to participation satisfaction, WOM praise, and WOM activity. Participation satisfaction significantly affected WOM praise and WOM activity. Therefore, to contribute to students' lifelong health, school sports programs should be developed and implemented to induce positive emotional responses, ensure students' participation in school sports, and improve their future quality of life.

Quality of life in children with erythropoietic protoporphyria: a case-control study.

Erythropoietic protoporphyria (EPP) is an inherited metabolic disease that causes painful phototoxic reactions, starting in childhood. Studies have shown a reduced quality of life (QoL) in adults with EPP, however, data on children with the disease are lacking. Since treatment for EPP is currently not registered for children, knowledge about their QoL is of crucial importance. In this prospective, case-control study, we included children from the Netherlands and Belgium diagnosed with EPP and matched to healthy controls. Previously collected EPP quality of life (EPP-QoL) data from matched adults with EPP were used. QoL scores, utilizing the Pediatric Quality of Life Inventory (PedsQL) and the disease-specific EPP-QoL, were collected. Scores range from 0 to 100, with higher scores indicating a higher QoL. Non-parametric tests were used to compare groups. A total of 15 cases, 13 matched healthy control children, and 15 matched adults with EPP were included. Children with EPP exhibited lower median scores in the PedsQL in both physical (cases: 87.5 (interquartile range [IQR] 77.7-96.1), controls: 99.2 [IQR 94.9-100.0], p = 0.03) and social (cases: 77.5 [IQR 69.4-86.3], controls: 97.5 [IQR 78.8-100.0], p = 0.04) domains compared to healthy children, although these differences were not statistically significant after correcting for multiple testing. The overall median EPP-QoL score for children was similar to adults with EPP (children: 44.4 [IQR 25.0-54.2], adults: 45.8 [IQR 25.7-68.1], p = 0.68). However, within the EPP-QoL subdomain on QoL, children were found to have significantly lower median scores (children: 16.7 [IQR 0.0-33.3], adults: 33.3 [IQR 33.3-62.5], p < 0.01). In conclusion, children with EPP experience a reduced QoL compared to both healthy children and adults with EPP. Ensuring treatment availability for this patient group is crucial for improving their QoL. We advocate the inclusion of children in safety and efficacy studies, to ensure availability of treatment in the future.

ChatGPT as a tool to improve access to knowledge on sexually transmitted infections.

OBJECTIVES: Specific to sexual health, individuals in need of information may be adolescents who have limited ability to formally access healthcare. These digital natives may turn to ChatGPT to address their concerns on sexually transmitted infections (STI). We sought to evaluate the veracity of ChatGPT's responses to commonly asked questions on STIs. METHODS: We instructed ChatGPT (GPT 3.5) to answer STI questions from three domains, namely, (1) general risk factors for STIs, (2) access to care and diagnosis of STIs and (3) management of STIs and postexposure prophylaxis. The responses were recorded and checked against the US Centers for Disease Control and Prevention STI Treatment Guidelines 2021. RESULTS: Overall, the responses were concise and accurate. In terms of prevention, ChatGPT could also recommend measures like safe sex practices and human papillomavirus vaccination. However, it failed to recommend HIV pre-exposure prophylaxis. When an individual expressed a symptom that could potentially represent STI (eg, dyspareunia) ChatGPT appropriately provided reassurance that other possibilities exist, but advocated for testing. In terms of treatment, ChatGPT consistently communicated the importance of partner testing and follow-up testing, but at times, failed to highlight the importance of testing for other STIs. Overall, the advice given was not tailored to the specific individual's circumstances. CONCLUSIONS: ChatGPT can provide helpful information regarding STIs, but the advice lacks specificity and requires a human physician to fine-tune. Its ubiquity may make it a useful adjunct to sexual health clinics, to improve knowledge and access to care.

Person-centred care intervention to promote self-efficacy in patients following a myocardial infarction (P2MIR): a protocol of a qualitative study for cultural adaptation within a Portuguese healthcare context.

INTRODUCTION: Cardiovascular diseases remain a leading cause of death worldwide. Recovery from myocardial infarction is challenging as the causes of symptoms span multiple aspects of health not just physical conditions. Evidence has shown a gap between the waycare is provided in the clinical setting and the person's needs and preferences. The implementation of person-centred care (PCC) interventions can promote recovery from myocardial infarction by allowing a greater understanding of the person's perception and its role on the overall recovering process. This study aims to culturally adapt an evidence-based PCC intervention to enhance self-efficacy in patients after myocardial infarction within a Portuguese healthcare context. METHODS AND ANALYSIS: The Portuguese person-centred care for myocardial infarction recovery (P2MIR) intervention is set to be developed from an evidence-based intervention, rooted in the ethics of PCC. An intervention of PCC for patients with acute coronary syndrome, which has been successfully implemented and evaluated in the Swedish healthcare context will be validated, culturally adapted and harmonised to the Portuguese healthcare context by using qualitative methods. To evaluate its acceptability, appropriateness and feasibility, a sample of stakeholders, consisting of a sample of healthcare professionals and a sample of people who suffered a myocardial infarction, will be recruited from a hospital, including both inpatient and outpatient departments. The stakeholders will be invited to semistructured focus group discussions, aiming to gather their perceptions about the P2MIR intervention, which will be previously presented to them. Data analysis will be conducted using content analysis following a deductive-inductive approach to further inform the intervention adaptation process to its final intervention in a Portuguese healthcare context. ETHICS AND DISSEMINATION: The study has been reviewed and approved by the Health Ethics' Committees of the Centro Hospitalar Lisboa Ocidental, Lisbon, Portugal (registry number 20170700050). The results will be disseminated through peer-reviewed journals and conference presentations.