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This scoping review identifies existing registries collecting data on Klinefelter’s syndrome (KS) patients and what data are collected, with the purpose of identifying any KS-specific registries. Findings to be used to inform future registry development.
A comprehensive scoping review was conducted. Multiple sources were reviewed and articles screened based on inclusion criteria and exclusion criteria.
Searches performed across multiple sources including PubMed, Embase, the Cochrane Library, WHO International Clinical Trials Registry Platform, Orphanet, EU Clinical Trials Register, King’s College London Library and charity organisation webpages.
The included studies were required to focus on KS patients with reported data from an active registry that routinely collects data on KS patients.
Basic information about registries identified in included articles was extracted. Registries identified were contacted with a standardised set of questions to collect additional contextual information. Findings are presented in tables.
The scoping review included 18 articles. From those, 10 registries storing KS patient data were identified. Only one of those registries was KS-specific. Only three out of 10 registries collected data that encompassed genetic, clinical and social variables. Most data included in registries were collected exclusively from medical records, although some registries included data from patient surveys. Registries that received government funding had more KS participants than those that did not.
With only one KS-specific registry existing worldwide and none within the UK, this review has identified a need for the development of further KS-specific registries. Data collected could be used to develop an accurate KS phenotype and therefore lead to increased diagnosis of the disorder, improving the lives of people with KS.
Objetivo: Analizar y clarificar el concepto de conocimientos de automanejo en personas con enfermedades crónicas, identificando sus atributos definitorios, antecedentes y consecuencias, a fin de construir una definición conceptual y operacional aplicable a la práctica e investigación en enfermería. Metodología: Se utilizó la metodología de análisis de concepto en sus ocho pasos, se realizó una revisión exhaustiva de la literatura científica, teoría e institucional publicada entre 2015 y 2025 en bases de datos confiables. La información obtenida fue organizada, depurada y analizada mediante el software Rayyan®. Los resultados se presentan con base a los ocho pasos. Resultados: el análisis permitió identificar tres dimensiones que definen el concepto: 1) cognitivo: que es la comprensión y dominio de la información en salud; 2) procedimental: que es la aplicación práctica del conocimiento y 3) reflexiva-contextual: que es la integración del conocimiento con experiencias y toma de decisiones. Los antecedentes se relacionan con el diagnóstico de enfermedades crónica, la alfabetización en salud y el apoyo del sistema de salud. Las consecuencias se asocian con una mayor adherencia al tratamiento, control clínico, autoeficacia y calidad de vida. Conclusiones: el conocimiento de automanejo en personas con enfermedades crónicas se define como un proceso cognitivo, procedimental y reflexivo, a través del cual la persona adquiere, comprende y aplica información relevante sobre su enfermedad para la toma de decisiones informadas y sostenibles. Su clarificación conceptual aporta una base sólida para el desarrollo de intervenciones en salud e instrumentos de medición.
ABSTRACT
Objective: To analyze and clarify the concept of self-management knowledge in people with chronic diseases, identifying its defining attributes, background, and consequences, to construct a conceptual and operational definition applicable to nursing practice and research. Methodology: The eight-step concept analysis methodology was used, and exhaustive review of the scientific, theoretical, and institutional literature published between 2015 and 2025 in reliable databases was conducted. The information obtained was organized, refined, and analyzed using Rayyan® software. The results are presented based on the eight steps. Results: The analysis identified three dimensions that define the concept: 1) cognitive: understanding and mastery of health information; 2) procedural: practical application of knowledge; and 3) reflective-contextual: integration of knowledge with experiences and decision-making. The background relates to the diagnosis of chronic diseases, health literacy, and health system support. The consequences are associated with greater adherence to treatment, clinical control, self-efficacy, and quality of life. Conclusions: Self-management knowledge in people with chronic diseases is defined as a cognitive, procedural, and reflective process through which individuals acquire, understand, and apply relevant information about their disease to make informed and sustainable decisions. Its conceptual clarification provides a solid basis for the development of health interventions and measurement instruments.
Chronic respiratory diseases (CRDs), such as asthma and chronic obstructive pulmonary disease (COPD), are among the leading non-communicable diseases (NCDs) worldwide. However, diagnosing CRDs in low-income and middle-income countries (LMICs) remains challenging due to limited access to spirometry and trained professionals. Aggravating the burden, CRDs often coexist with other NCDs, increasing healthcare costs, reducing quality of life and elevating mortality. These challenges highlight the need for simple case-finding approaches for CRDs, such as the COPD in Low-Income and Middle-Income Countries Assessment (COLA-6) questionnaire, to support prompt identification and appropriate care within NCD services in LMICs.
To evaluate the discriminative accuracy, feasibility and implementation of the COLA-6 questionnaire in identifying and managing CRDs in Brazilian Primary Healthcare (PHC) services for NCDs.
The Multimorbidity Approach for REspiratory Solutions (MARES) study consists of three work packages to be conducted in PHC services in São Carlos/SP and São Paulo/SP, Brazil.
MARES-1: A cross-sectional observational study enrolling 859 individuals with at least one NCD receiving care in PHC. The COLA-6 questionnaire will be administered by the research team and compared with quality-assured spirometry. The Chronic Airways Assessment Test (CAAT), Asthma Control Questionnaire (ACQ-7) and fractional exhaled nitric oxide (FeNO) will also be assessed. The diagnostic performance of COLA-6 for identifying CRDs—including COPD, asthma, preserved ratio impaired spirometry, restriction and overlaps—will be assessed using area under receiver operating characteristic curves and 95% CIs.
MARES-2: A cross-sectional observational study enrolling 20 healthcare professionals (physicians, physiotherapists, community health agents and nurses) from five PHC services. These professionals will apply the COLA-6 during routine NCD care to a total sample of 1000 patients. Qualitative interviews will be conducted to explore barriers and facilitators to the implementation of COLA-6, using deductive thematic analysis.
MARES-3: A longitudinal, prospective observational study in which patients from MARES-1 and MARES-2 will be reassessed at 6-month follow-up. A total sample of 473 participants with abnormal spirometry, a diagnosis of CRD or high risk for CRDs is expected. Participants will undergo spirometry, and a subset will be interviewed to explore their healthcare experiences through qualitative thematic analysis. Access to diagnostic and treatment services in Brazil will be assessed. Changes in spirometry values, FeNO, CAAT and ACQ-7 scores from baseline to 6 months in patients from MARES-1 will be analysed.
This study has been approved by the Ethics Committees of Federal University of São Carlos and University of Santo Amaro (UNISA). Ethical approval was also granted by the University College London. Results will be disseminated through peer-reviewed medical journals and presentations at international conferences. Results will improve identification of CRDs, addressing a significant gap in current PHC settings.
To assess the impact of a nurse-led remote secondary cardiovascular prevention programme versus usual follow-up in patients who have suffered an acute coronary syndrome in terms of major adverse clinical events (MACE), diet, physical exercise, smoking, emotional state, adherence to medical treatment, cardiometabolic profile and anthropometric parameters within one year of discharge.
Prospective, randomised, open-label, evaluator-blinded, multicentre trial.
Between October 17, 2017, and February 5, 2023, patients were randomly assigned to either a usual follow-up of two cardiology visits over 12 months or the nurse-led remote secondary cardiovascular prevention programme, which also included 5 nursing visits (one face-to-face and four remote).
At 12 months, the nurse-led remote prevention programme group (interventional group) had lower smoking rates, greater adherence to medication, greater adherence to the Mediterranean diet, more physical activity, and better perceived health status compared to the usual follow-up group. The interventional group demonstrated a reduction in major adverse clinical events (20.7%) compared to the usual follow-up group (12.4%). This reduction was observed particularly in Acute Coronary Syndrome recurrence, all-cause hospitalisation, and hospitalisation for cardiovascular causes.
Patients randomised to the nurse-led remote prevention programme showed a significant reduction of the MACE, improved lifestyle, and medication adherence at 12 months compared to the usual follow-up group.
This study illustrates the feasibility and efficacy of a remote secondary cardiovascular prevention programme led by advanced practice nurses in patients who have suffered an Acute Coronary Syndrome.
CONSORT.
None.
The study was prospectively registered at www.clinicaltrials.gov: NCT03234023
Genitourinary syndrome of menopause (GSM) is a prevalent condition among breast cancer survivors, often exacerbated by oncological treatments. Hormonal therapies are typically contraindicated in this population, necessitating effective non-hormonal interventions.
This randomised controlled trial aims to compare the effectiveness and cost-effectiveness of multimodal pelvic floor physiotherapy—comprising pelvic floor muscle training, non-ablative radiofrequency, therapeutic pelvic health education and the use of vaginal moisturisers—versus fractional CO2 laser therapy combined with vaginal moisturisers in alleviating GSM symptoms in breast cancer survivors. Participants will be randomly assigned to one of the two intervention groups. Primary outcomes include measures of sexual function (assessed by the Female Sexual Function Index), subjective pelvic perineal pain intensity (measured with a 100 mm Visual Analogue Scale) and health-related quality of life (assessed by the Functional Assessment of Cancer Therapy-Breast), assessed at baseline, post-intervention and at 3, 6 and 12 months of follow-up. Statistical analyses will be conducted to evaluate the clinical efficacy and cost-effectiveness of the interventions.
The study protocol has been approved by the Ethics and Health Research Committee of the University of Alcalá (Reference: CEIP/2024/1/012). All participants will provide informed consent prior to inclusion in the study. Findings will be disseminated through peer-reviewed journals and conference presentations, and by engaging with patient associations and survivor groups through tailored materials.
Patient safety culture plays a crucial role in reducing clinical errors. By improving healthcare professionals’ and patients’ understanding of human fallibility and error attribution, patient care can be enhanced, fostering greater engagement from both groups. A Just Culture approach, which balances accountability and learning from errors, is a key factor in fostering this safety culture. The DECIDE Project aims to: (1) examine the conceptualisation of human fallibility within and beyond healthcare, (2) identify barriers and facilitators to Just Culture adoption, (3) assess the impact of psychoeducational interventions on professionals’ and social leaders’ attitudes toward clinical errors and (4) develop a roadmap for Just Culture implementation in healthcare.
A 36-month mixed-methods study including qualitative research, a survey of 1255 healthcare professionals, an experimental study with 180 participants (60 per arm) testing interventions based on cognitive dissonance and reasoned action theories and a consensus conference to develop a Just Culture roadmap. Participants include professionals from hospitals, primary care, long-term care, nursing homes and social leaders in Spain. The qualitative data collected during stages 1 and 4 will be analysed using MAXQDA software. In identifying factors related to the implementation of Just Culture during stage 2, ANOVA, t-tests and multiple linear regression will be conducted. To examine the effects of the interventions in phase 3, a linear mixed-effects model for repeated measures will be employed.
This study has received ethical approval from three institutional review boards. Findings will be disseminated through peer-reviewed publications, conference presentations and policy recommendations aimed at integrating Just Culture into national and international patient safety strategies. By promoting a constructive approach to errors, the project could enhance incident reporting, strengthen professional engagement in safety policies and foster a culture of learning and accountability. Its findings will guide policy recommendations for integrating Just Culture into national and international patient safety strategies, with potential applications beyond Spain.
Patients living with chronic obstructive pulmonary disease (COPD) experience periods of disease stability and exacerbations (ECOPD). COPD imposes a negative and impactful extrapulmonary impairment and commonly overlaps with multimorbidity, particularly cardiovascular disease. Pulmonary rehabilitation (PR) aims to improve physical activity (PA) and quality of life, while behavioural change interventions (BCIs) aim to promote lifestyle changes and autonomy. However, after ECOPD, a variety of barriers often delay patient referral to PR. This study aims to assess the effects of a BCI for patients after ECOPD, focusing on cardiovascular health, PA and functionality. Additionally, the study will assess 6-month sustainability of PA and conduct a cost-utility analysis comparing a non-intervention group in the Unified Health System.
This randomised clinical trial will assess patients with ECOPD over 12 weeks using a BCI based on self-determination theory to increase daily steps. First, the cardiovascular and functional profile will be evaluated. Afterwards, the patients will receive an accelerometer to monitor the PA level. After 7 days, questionnaires will be applied on quality of life, symptoms and motivational levels for PA. Patients will be randomised into control group or intervention groups, both will receive educational booklets and IG will also receive an educational interview. PA will be tracked using activPAL accelerometer at weeks 1, 4 and 12, and follow-up at 6 months. Data analysis will include unpaired Student’s t-test or Mann-Whitney test for group comparison, and a linear mixed model to assess intervention effects over time. Economic evaluation, using STATA (V.14), will involve correlation analysis, and p
This study has been approved by the Federal University of São Carlos’ Ethics Committee, Irmandade Santa Casa de Misericórdia de São Carlos and Base Hospital of São José do Rio Preto. All procedures will be conducted in accordance with the Declaration of Helsinki, Good Clinical Practice guidelines and applicable regulatory requirements. All results will be presented in peer-reviewed medical journals and international conferences.
Brazilian Registry of Clinical Trials under the registration number RBR-6m9pwb7.
This study aimed to explore the direct and indirect effects of secondary traumatic stress (STS) on nurses' perceived work ability and the effect of these two variables on job satisfaction, organisational turnover intention and intention to leave the nursing profession.
A cross-sectional study was conducted from June to November 2023.
Data were collected by sending an online survey to a convenience sample of nurses. Instruments for data collection included a 37-item questionnaire divided into three sections: (i) socio-demographics, job satisfaction, organisational turnover intention, and intention to leave the profession; (ii) perceived work ability assessed through the Work Ability Index (WAI); (iii) STS measured with the Secondary Traumatic Stress Scale.
Two hundred seventy-one nurses completed the questionnaire. STS negatively and statistically impacted on WAI, and it was a direct determinant of intention to leave the nursing profession. WAI showed a direct, positive and significant impact on job satisfaction and it was a significant partial mediator in the relationship between STS and job satisfaction. Job satisfaction mediated between WAI, the intention to leave the nursing profession, and the organisational turnover intention.
STS negatively impacted nurses' work ability, influencing their job satisfaction through the mediation of WAI, whereas job satisfaction independently affected nurses' organisational turnover intention. Moreover, STS was a positive and direct determinant of the intention to leave the nursing profession.
Nurses, as helping professionals, are exposed to extreme stressful events resulting from the traumatic experiences of patients. STS in nurses can lead to emotional exhaustion, turnover intention, job dissatisfaction and reduced work ability. The findings from this study offer insights that can help shape organisational health policies aimed at reducing STS, preserving nurses' work ability, enhancing job satisfaction and mitigating turnover intentions within and outside the nursing profession.
This study followed the STROBE checklist guidelines for cross-sectional studies.
No Patient or Public Contribution.
As healthcare systems confront rising demands and workforce shortages, advanced practice nursing (APN) has emerged globally as a vital strategy to improve care delivery and address systemic gaps, particularly in primary care facilities in low- and middle-income countries like the Philippines.
Qualitative case study.
This study was conducted in a rural setting in the Philippines and draws on a preceding mixed-methods case study that explored task shifting and advanced nursing practice in primary care facilities. Using purposeful sampling, 41 nurses, physicians, academics, policymakers, and recipients of care participated in interviews and focus group discussions. Qualitative data were thematically analyzed in ATLAS.ti, and quantitative data were descriptively analyzed in JASP. Findings were integrated into the APN framework tailored to primary care in low- and middle-income countries (LMICs).
Although the Philippines lacks a formal APN policy, nurses informally fulfill many advanced practice roles aligned with Hamric's model, particularly in direct patient care, leadership, collaboration, and evidence-based practice. Key enabling competencies include health promotion, systems thinking, and policy implementation—environmental barriers such as a lack of regulatory frameworks, educational pathways, and financing limit APN institutionalization.
This study proposes a contextualized advanced practice nursing (APN) model, which is relevant for LMICs, particularly in primary care facilities facing workforce shortages and rising NCD burdens. To institutionalize APN roles, key reforms should include investments in education, certification, financing, and regulation. Settings implementing initiatives to attain universal health coverage can serve as entry points for recognizing APN functions through competency-based systems.
The study proposes a contextualized APN framework for low-resource settings, showing that formalizing expanded nursing roles through education and certification can enhance access to quality care and advance UHC in underserved areas.
Objetivo principal: identificar intervenciones post quirúrgicas basadas en la evidencia que garantizarían la adaptación al nuevo estilo de vida y le ayuden a retomar la actividad física que realizaba antes de la intervención quirúrgica con seguridad y evitando complicaciones. Metodología: búsqueda de evidencia siguiendo el modelo PRAXIS. Conclusión principal: Recomendaciones de buena práctica: (a)informar a la persona ostomizada como realizar ejercicios abdominales seguros tras la cirugía para fortalecer la musculatura abdominal, (b)mostrar diferentes alternativas de dispositivos y accesorios para la realización de ejercicio /deporte, (c)instruir al paciente en vigilar la presencia de posibles complicaciones al realizar ejercicio. Prácticas de autocuidado: Contactar con su estomaterapeuta para realizar los ejercicios de manera segura, conocer la variedad de dispositivos y accesorios para la realización de deporte, prevenir complicaciones.
Objetivo principal: Evaluar la factibilidad de la aplicación de la técnica de canalización eco-guiada por enfermería en el servicio de neonatología. Metodología: Estudio observacional descriptivo prospectivo realizado entre mayo de 2018 y enero de 2020 en una UCI Neonatal. Resultados principales: Se registraron 55 canalizaciones, con tasa de éxito del 94,55%. La media de edad gestacional, peso y días de vida fue de 32+3SG (24-41), 2410gr (560-4450) y 19días (0-124), respectivamente. No encontramos diferencias significativas en relación con el éxito de la canalización y las características del neonato. Conclusión principal: La técnica eco-guiada ha demostrado ser útil en el paciente neonatal con acceso venoso complejo. El desarrollo de esta técnica es de interés para la enfermería neonatal y justifica la creación de un equipo de enfermería especializado.
Objetivo principal: Conocer las experiencias laborales y la vida de una matrona del siglo pasado. Metodología: Cualitativa. Análisis de contenido. Resultados principales: Dificultad para conciliar vida personal y laboral. Soledad. Malas condiciones laborales. Conclusión principal: La profesión de matrona se desempeñaba en condiciones dificiles y con pocos medios.
Introducción: En las últimas décadas, la población juvenil española, ha experimentado numerosos cambios en sus patrones de alimentación y ejercicio físico, destacando el alto porcentaje de adolescentes que acuden a su centro educativo sin haber desayunado. Diversos estudios muestran que la educación escolar puede producir efectos beneficiosos, promoviendo actividad física y alimentación saludable, hábitos que permanecen el resto de la vida. Objetivo: Determinar la prevalencia de los hábitos nutricionales y de ejercicio físico en la población infantojuvenil de Benicassim, que durante el año lectivo 2015-2016 cursara de 6º primaria a 2º de bachillerato. Metodología: Estudio descriptivo, observacional y transversal que muestra los hábitos nutricionales y de ejercicio físico mediante la Encuesta mundial de salud a escolares (módulos de alimentación y deporte). Participaron 143 alumnos que cursaban entre 6º de primaria y 2º de bachillerato en Benicàssim. Resultados principales: La mayoría de alumnos mantienen hábitos saludables (desayuno y almuerzo diario, consumo de lácteos y consumo moderado de alimentos salados y grasos), aunque persiste un 20% que no muestran estos hábitos. Los chicos realizan más ejercicio físico (3-4 días), que las chicas (2-3 días), que parece que pasan más horas sentadas. Conclusiones: La mayor parte de los encuestados presentan hábitos saludables, sin embargo, gran parte de los alumnos no desayunan a diario. Además cabe destacar el importante porcentaje de población con un IMC considerado como delgadez.
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