Calidad de vida relacionada con la salud y los estados de ánimo en estudiantes de instituciones educativas de Antioquia, Colombia / Quality of life related to the health and mood states of students in educational institutions from Antioquia, Colombia / Qualidade de vida relacionada à saúde e ao humor em estudantes de instituições de ensino em Antioquia, Colômbia

Introducción: La calidad de vida relacionada con la salud (CVRS) y los estados de ánimo son indicadores cruciales del bienestar en adolescentes, pero su relación con estudiantes de Antioquia, Colombia, no ha sido ampliamente estudiada. Objetivo: Determinar la CVRS y los estados de ánimo en escolares de Antioquia-Colombia. Materiales y métodos: Estudio transversal con 1957 escolares de 9 a 20 años. Se aplicaron mediciones de CVRS, ansiedad, depresión, hostilidad y alegría, actividad física, comportamiento sedentario, apoyo social de padres y nivel socioeconómico. Resultados: La calidad de vida alta (CVA) es más elevada en hombres, personas con alegría, estudiantes con apoyo de padres, activos físicamente y personas de nivel socioeconómico alto y medio. AL aumentar un año de edad, disminuye en un 15 % la CVA, y al aumentar la depresión, la ansiedad y el comportamiento sedentario disminuye la CVA. Además, los niveles de depresión y ansiedad son mayores en mujeres, estudiantes mayores, sin apoyo de los padres y personas sedentarias. Conclusiones: La CVRS se asocia con estados de ánimo, actividad física, comportamiento sedentario y apoyo de los padres; mientras que los estados de ánimo se asocian con el sexo, el apoyo de los padres, la CVS y el sedentarismo.

Introduction: Even though health-related quality of life (HRQL) and mood states are key indicators of the well-being of adolescents, their relationship has not been analyzed in students from Antioquia, Colombia. Objective: To determine HRQL and mood states in schoolchildren from Antioquia. Materials and methods: A cross-sectional study was conducted on 1,957 schoolchildren and adolescents aged between 9 and 20 years. Measurements of HRQL, anxiety, depression, hostility and happiness, physical activity, sedentary behavior, parental social support, and socioeconomic status were applied. Results: A high quality of life (HQL) was observed more frequently in male participants, students with parental support, physically active, and those belonging to medium and high socioeconomic status. HQL decreased 15% as their age increased by one year. Also, HQL was reduced when depression, anxiety, and sedentary behavior increased. Furthermore, depression and anxiety levels were higher in women, older students, as well as in those without parental control and with sedentary behavior. Conclusions: HRQL is associated with mood states, physical activity, sedentary behavior, and parental support. In contrast, mood states are related to gender, parental support, HQL, and sedentary lifestyle.

Introdução: A qualidade de vida relacionada à saúde (CVRS) e os estados de humor são indicadores cruciais de bem-estar em adolescentes, mas sua relação com estudantes de Antioquia, Colômbia, não foi amplamente estudada. Objetivo: Determinar a CVRS e os estados de humor em escolares de Antioquia-Colômbia. Materiais e métodos: Estudo transversal com 1.957 escolares de 9 a 20 anos. Foram aplicadas medidas de QVRS, ansiedade, depressão, hostilidade e felicidade, atividade física, comportamento sedentário, apoio social dos pais e nível socioeconômico. Resultados: A alta qualidade de vida (CVA) é maior em homens, pessoas com alegria, estudantes com apoio parental, fisicamente ativos e pessoas de nível socioeconômico alto e médio. À medida que a idade aumenta em um ano, diminui em 15% o CVA, e ao aumentar a depressão, a ansiedade e o comportamento sedentário aumentam, o CVA diminui. Além disso, os níveis de depressão e ansiedade são mais elevados nas mulheres, nos estudantes mais velhos, sem apoio dos pais e nas pessoas sedentárias. Conclusões: A QVRS está associada a estados de humor, atividade física, comportamento sedentário e apoio parental; enquanto os estados de humor estão associados ao sexo, apoio parental, CVS e estilo de vida sedentário.

Un análisis integrado entre la calidad de vida y las necesidades de apoyo de personas adultas con discapacidad intelectual en Chile / An integrated analysis between the quality of life and the support needs of adults with intellectual disabilities in Chile

El paradigma de apoyos y el de calidad de vida se han transformado en guías fundamentales para los avances en el ámbito de la discapacidad intelectual (DI). Con base en una muestra de 93 personas adultas con DI, se analiza, desde un enfoque cuantitativo no experimental, la relación entre la calidad de vida y las necesidades de apoyo, aplicando la escala INICO-FEAPS y la escala de Intensidad de Apoyos (SIS) para cada constructo. Los principales resultados evidencian que existe una relación fuerte e indirecta entre calidad de vida y necesidades de apoyos, y también la relevancia de analizar dichos resultados desde variables como grado de discapacidad, sexo o nivel socioeconómico. La discusión permite inferir la necesidad de discutir nuevas estrategias en torno a categorías como el grado de discapacidad, la autodeterminación e inclusión social, como elementos facilitadores de la calidad de vida y apoyos desde un enfoque integral que contribuya al desarrollo de estrategias de programas sociales para la población con DI. (AU)

The support paradigm and the quality of life paradigm have become fundamental guides for progress in the field of Intellectual Disability (ID). Based on a sample of 93 adults with ID, the relationship between Quality of Life and Support Needs is analyzed from a non-experimental quantitative approach, applying the INICO-FEAPS scale and the SIS Support Intensity scale for each construct. The main results show that there is a strong and indirect relationship between quality of life and support needs, and the relevance of analyzing these results from variables such as the degree of disability, sex or socioeconomic level. The discussion allows us to infer the need to discuss new strategies around categories such as the degree of disability, self-determination and social inclusion, as facilitating elements of quality of life and supporting a comprehensive approach that contributes to the development of social program strategies for the population with ID. (AU)

Un análisis integrado entre la calidad de vida y las necesidades de apoyo de personas adultas con discapacidad intelectual en Chile / An integrated analysis between the quality of life and the support needs of adults with intellectual disabilities in Chile

El paradigma de apoyos y el de calidad de vida se han transformado en guías fundamentales para los avances en el ámbito de la discapacidad intelectual (DI). Con base en una muestra de 93 personas adultas con DI, se analiza, desde un enfoque cuantitativo no experimental, la relación entre la calidad de vida y las necesidades de apoyo, aplicando la escala INICO-FEAPS y la escala de Intensidad de Apoyos (SIS) para cada constructo. Los principales resultados evidencian que existe una relación fuerte e indirecta entre calidad de vida y necesidades de apoyos, y también la relevancia de analizar dichos resultados desde variables como grado de discapacidad, sexo o nivel socioeconómico. La discusión permite inferir la necesidad de discutir nuevas estrategias en torno a categorías como el grado de discapacidad, la autodeterminación e inclusión social, como elementos facilitadores de la calidad de vida y apoyos desde un enfoque integral que contribuya al desarrollo de estrategias de programas sociales para la población con DI. (AU)

The support paradigm and the quality of life paradigm have become fundamental guides for progress in the field of Intellectual Disability (ID). Based on a sample of 93 adults with ID, the relationship between Quality of Life and Support Needs is analyzed from a non-experimental quantitative approach, applying the INICO-FEAPS scale and the SIS Support Intensity scale for each construct. The main results show that there is a strong and indirect relationship between quality of life and support needs, and the relevance of analyzing these results from variables such as the degree of disability, sex or socioeconomic level. The discussion allows us to infer the need to discuss new strategies around categories such as the degree of disability, self-determination and social inclusion, as facilitating elements of quality of life and supporting a comprehensive approach that contributes to the development of social program strategies for the population with ID. (AU)

A new paradigm in the management of scalp pruritus: findings from the SCALP-PR trial.

PURPOSE: The "Impact of scalp pruritus in dermatological consultations in Spain: The SCALP-PR trial" was initiated to address the common yet often insufficiently examined issue of scalp pruritus in dermatology. This condition leads to an uncontrollable urge to scratch, affecting the patients' quality of life and potentially causing scalp damage. This study aimed to explore the prevalence, patient profile, underlying conditios, and therapeutic approaches for scalp pruritus in Spain, and to assess the safety and efficacy profile, as well as the tolerability of a non-pharmacologic treatment. METHODS: From 2021 through 2022, 75 dermatologists enrolled a total of 359 patients in a study on scalp pruritus, approved by the Bellvitge University Hospital Research Ethics Committee, Barcelona, Spain. This evidence-based research combined a meta-analysis with observational study techniques focused on real-world evidence to examine the therapeutic impact on quality of life (QoL). Utilizing the Dermatology Life Quality Index (DLQI) for QoL assessments, the study evaluated the effectiveness of the topical product over 15 days. Data collection was conducted via an eCRF and analyzed with statistical methods to provide reliable insights into the management of scalp pruritus. RESULTS: The prevalence of scalp pruritus in Spain was found to be 6.9%, predominantly among women with a mean age of 52.5 years. The leading causes identified were seborrheic dermatitis and pruritus of undetermined etiology or sensitive scalp. Stress was noted as a key factor, with corticosteroids and hygienic measures being common therapies. The topical product demonstrated significant reductions in pruritus and scratching in more than 90% of patients after 15 days. Improvements were also seen in dermatological quality of life, with 87.1% of patients showing enhancements in DLQI scores. The product was well-received thanksto its cosmetic properties, with high ratings in texture, ease of application, and fragrance. CONCLUSION: The topical product studied is a safe, effective, and cosmetically appealing treatment, improving scalp pruritus in various etiologies for most patients. The results highlight the need for patient-center treatments in dermatology, providing important insights for clinical practice and future research.

Influencia da Qualidade do Sono na Qualidade de Vida no Trabalho de Policais Militares / Influencia de la Calidad del Sueño en la Calidad de Vida en el Trabajo de la Policía Militar / Influence of Sleep Quality on the Quality of Life and Work of Military Police Officers

Resumo Introdução: A profissão policial é considerada de alto risco e exige um vigor físico e mental do trabalhador diante do serviço realizado. De tal modo que uma boa qualidade do sono é importante, pois impacta diretamente em diversos aspectos na saúde desses trabalhadores. Ademais, a falta de uma boa qualidade do sono devido ao trabalho pode influenciar negativamente a qualidade de vida no trabalho. Objetivo: Analisar a influência da qualidade do sono na qualidade de vida no trabalho de policiais militares. Metodologia: Estudo quantitativo, correlacionalde corte transversal, realizado no primeiro semestre de 2019, com policiais de três municípios da Bahia, Brasil. Foram utilizados três instrumentos: sociodemográfico e características laborais; qualidade de vida de vida no trabalho; e qualidade do sono. Foi aplicado o teste do qui quadrado para as variáveis sociodemograficas e ocupacionais. Posteriormente, foi aplicado o teste de correlação de Spearman entre a qualidade do sono com as dimensões da qualidade de vida no trabalho. Resultados: Evidenciou-se entre os 298 policiais que a mediana da idade foi de 40 anos e tempo de serviço ≤ 7 anos, observou-se também que os policiais com pior qualidade do sono apresentaram qualidade de vida no trabalho insatisfatória em todas as dimensões (biológica/fisiológica; psicológica/comportamental; sociológica/relacional; econômica/política, ambiental/organizacional). Conclusão: Os policiais sofrem com a qualidade do sono e consequentemente influencia negativamente a qualidade de vida no trabalho. Assim, há uma necessidade de desenvolver ações no ambiente de trabalho que possam diminuir os afastamentos decorrentes dos problemas de saúde ocasionados pela qualidade do sono.

Resumen Introdución: La formación policial se considera de alto riesgo y requiere vigor físico y mental por parte de la persona trabajadora antes de realizar el servicio. Para esto, la buena calidad de sueño es importante, ya que impacta directamente en la salud de la población trabajadora en varios aspectos. Además, la falta de una buena calidad de sueño debido al trabajo puede influir negativamente en la calidad de vida fuera del trabajo. Objetivo: Analizar la influencia de la calidad del sueño en la calidad de vida en el trabajo de policías militares. Metodología: Estudio cuantitativo, correlacional transversal, realizado en el primer semestre de 2019, con policías de tres municipios de Bahía, Brasil. Se utilizaron tres instrumentos: características sociodemográficas y laborales, calidad de vida en el trabajo y calidad de sueño. Se aplicó la prueba chi cuadrado para las variables sociodemográficas y ocupacionales. Posteriormente, se aplicó la prueba de correlación de Spearman entre la calidad del sueño y las dimensiones de calidad de vida en el trabajo. Resultados: La muestra fue de 298 policías, la mediana de edad fue de 40 años y la antigüedad en el servicio fue ≤ 7 años. También, se observó quienes tuvieron peor calidad de sueño, también tuvieron una calidad de vida en el trabajo insatisfactoria en todos sus dimensiones (biológica/fisiológica; psicológica/conductual; sociológica/relacional; económica/política, ambiental/organizacional). Conclusión: Quienes son agentes de policía sufren de mala calidad de sueño y, en consecuencia, se influye negativamente su calidad de vida en el trabajo. Por lo tanto, existe la necesidad de desarrollar acciones en el lugar de trabajo que pueda reducir los riesgos de problemas de salud causados por la calidad del sueño.

Abstract Background: Police training is considered high risk and demands physical and mental vigor from the worker before preforming the service. Therefore, sleep quality is important as it directly impacts the health of these workers in several aspects. Furthermore, the lack of sleep quality due to work can negatively influence the quality of life outside of work. Aim: To analyze the influence of sleep quality on the quality of life and work of military police officers. Methods: A quantitative, cross-sectional correlational study, conducted in the first half of 2019 with police officers from three municipalities in Bahia, Brazil. Three instruments were used: sociodemographic and work characteristics; quality of life at work; and sleep quality. The chi-square test was applied for sociodemographic and occupational variations. Subsequently, the Spearman correlation test was applied between sleep quality and the quality of life and work dimensions. Results: Among the 298 police officers the median age was 40 years and the length of service was ≤ 7 years. It was also observed that police officers with poorer sleep quality had an unsatisfactory quality of life at work in all its dimensions (biological/physiological; psychological/behavioral; sociological/relational; economic/political, environmental/organizational). Conclusion: Police officers suffer from poor sleep quality and this negatively influence their quality of life and work. Therefore, there is a need to develop actions in the workplace that may reduce the risks of health problems caused by poor sleep quality.

Translation, adaptation, and cross-cultural validation of the CDQ-24 scale in patients with primary blepharospasm under botulinum toxin treatment, pilot test.

BACKGROUND: Benign essential blepharospasm (BEB) is the most common adult-onset focal facial dystonia and its treatment of choice is periodic application of botulinum toxin (BtA). It has a higher incidence in middle and late adulthood, especially in women between 40 and 60 years of age. OBJECTIVE: To carry out the translation and cross-cultural adaptation of the CDQ24 questionnaire in its Spanish version in patients diagnosed with BEB who have been treated with BtA in an ophthalmologic center in Bogotá - Colombia. MATERIALS AND METHODS: Pilot test of validation study and adaptation of a scale assembled in a prospective cohort of the CDQ24 instrument to Spanish in adult patients with primary blepharospasm treated with botulinum toxin in Bogota, Colombia. RESULTS: We obtained a sample of 26 patients to whom the instrument was applied after translation and retranslation of the original document, composed of 19 (73%) women with a median age of 64.5 years; the average time to answer the survey was 4.93 min. The internal consistency of the scale evaluated by Cronbach's Alpha had a total score of 0.78. Criterion validity between the CDQ24 scale and the WHOQOL-BREF quality of life scale was determined by determining correlation between the Emotional Well-Being and Phsychological domains of both scales. CONCLUSIONS: The translation and cross-cultural adaptation of the CDQ-24 scale into Spanish allowed the applicability of the instrument to the Spanish-speaking population during the pilot test, which allows us to continue the relevant studies in the study population.

Influence of socioeconomic factors on glycemic control, therapeutic adherence and quality of life in children and adolescents with type 1 diabetes.

OBJECTIVE: To stablish the relationship between socioeconomic status of a cohort of children and adolescents with type 1 diabetes (T1D) with glycemic control, therapeutic adherence and diabetes quality of life (DQoL). PATIENTS Y METHODS: A cross-sectional, observational study with consecutive inclusion was carried out. Participants aged 8-18 years with T1D duration >1 year. Data on family structure, family income, parents' educational level and parental role on primary diabetes care supervision were registered. Adherence (DMQ-Sp) and DQoL (PedsQl) were analyzed. Linear and logistic regression models adjusted for demographics, family structure and parental role on primary diabetes care responsibility were applied. RESULTS: A total of 323 patients (T1D duration 5,3 ±â€¯3,3 years; HbA1c 7,7 ±â€¯1,0%; age 13,3 ±â€¯2,8 years; 49,8% females) were included. Patients living in a nuclear family and those whose main diabetes care supervision was shared by both parents showed lower HbA1c [adjusted for demographics and family structure (7,06; CI 95% 6,52-7,59); adjusted for demographics and role on primary diabetes care supervision (7,43; CI 95% 6,57-8,28)]. DMQ-Sp score (adjusted for demographics and role on main supervision) was higher in patients whose parents shared the diabetes care supervision (84,56; CI 95% 73,93-95,19). Parents sharing diabetes care supervision showed a significantly higher PedsQl score (both 74,63 ±â€¯12,70 vs mother 68,53 ±â€¯14,59; p = 0,001). CONCLUSIONS: Children and adolescents with T1D had lower HbA1c, better therapeutic adherence and better DQoL when lived in a nuclear family, with higher socioeconomic status and the responsibility for supervising diabetes care was shared by both parents.

PSORIATIC PATIENT-REPORTED OUTCOMES, ADHERENCE, AND SATISFACTION. / RESULTADOS COMUNICADOS POR EL PACIENTE, ADHERENCIA Y SATISFACCIÓN EN PACIENTES CON PSORIASIS.

BACKGROUND AND OBJECTIVES: Patient-reported outcomes (PROs) are outcomes evaluated by patients based on their perception of their disease and treatment. The objective of PROs is to determine antipsoriatic treatment-related adherence, quality of life (QoL) and satisfaction. MATERIALS AND METHODS: We conducted an observational cross-sectional, prospective, and single-center study in which PROs surveys were conducted on adherence (Morisky-Green [MG] test), treatment satisfaction (Spanish Questionnaire of Treatment Satisfaction in Psoriasis [CESTEP]) and QoL (Skindex-29 and DLQI). Additional variables include: PASI, BSA. STATISTICAL ANALYSIS: Jamovi®2.3.26. RESULTS: A total of 100 surveys were conducted. Based on the MG questionnaire, we found that 75% (75/100) of patients were adherent vs 94% (94/100) from the dispensation records. Regarding CESTEP, a mean score of 7.4 ± 7.7 (close to maximum satisfaction 0) was obtained, while DLQI yielded a score of 2.6 ± 4.6 (indicating a small effect on QoL), and SKINDEX-29 a score of 14.6 ± 15.4 (68% indicating mild (< 5) or very mild (6-17) impact according to Nijsten et al.). Based on CESTEP a p.Rho Spearman value of 0.338 (p = 0.004) was obtained in relation to PASI when the study was conducted with a BSA of 0.255 (p = 0.050), DLQI results of 0.508 (p < 0.001) and Skindex-29 results of 0.397(p < 0.001). At the time of the study, the correlation matrix between DLQI result and PASI was 0.365 (p = 0.002) with a BSA of 0.347 (p = 0.007). Skindex-29 results with PASI were 0.380 (p = 0.001) and with BSA, 0.295 (p = 0.022). CONCLUSIONS: Patients on therapy exhibit a good QoL, high adherence and satisfaction with their treatment. A significant correlation was seen among satisfaction, QoL, and PASI-BSA at the time of the study.

Perceived quality of life in patients with psoriasis treated with interleukin 17 or 23 inhibitors.

OBJECTIVE: To determine the effectiveness in terms of quality of life perceived by adult patients with moderate/severe plaque psoriasis treated with interleukin 17 or 23 inhibitors and to identify associated factors. METHOD: Cross-sectional observational study including adult patients diagnosed with moderate/severe plaque psoriasis treated with interleukin 17 or 23 inhibitors for at least 12 or 16 weeks in follow-up, respectively. RESULTS: Forty-one patients were included: 65% male, median age 54 years (SD=13). The included patients were treated with ixekizumab 35%, guselkumab 25%, secukinumab 17.5%, brodalumab 15%, and risankizumab 7.5%. Psoariasis area severity index (PASI) reduction was 94.6% (RIC 76.8-100%), DLQI of 1 (RIC 0-2.75), DLQI≤1 60%. The most affected health dimensions were symptoms and perceptions (57.5%), activities of daily living (27.5%), and discomfort caused with treatment (17.5%). No association was found between DLQI score <1 and demographic, comorbidities, and treatment-related variables. The median PASI reduction in patients with DLQI<1 was superior to patients with DLQI>1 (100% vs 90.2%, p=.025). CONCLUSIONS: Patients with moderate/severe plaque psoriasis treated with interleukin 17 or 23 inhibitors achieve adequate therapeutic targets achieving the target set according to clinical practice guideline recommendations (score ≤1 on the DLQI questionnaire and 90-100% reduction in the PASI index) and in accordance with the results of recent meta-analyses and real-life studies. A greater reduction of the PASI index is observed in the group reaching the quality of life target, there being the possibility of using patient-reported outcomes in the evaluation of treatment effectiveness.

Efectividad del entrenamiento muscular pélvico temprano en la fuerza de suelo pélvico, síntomas de incontinencia urinaria, función sexual y calidad de vida en pacientes posprostatectomía radical: revisión sistemática de ensayos clínicos aleatorizados / Effectiveness of early pelvic muscle training on pelvic floor strength, urinary incontinence symptoms, sexual function, and quality of life in post-radical prostatectomy patients: Systematic review of randomized clinical trials

Este estudio tuvo como objetivo evaluar la efectividad del entrenamiento muscular pélvico temprano para reducir los síntomas de incontinencia urinaria, mejorar la calidad de vida, función sexual y aumentar la fuerza de suelo pélvico en pacientes posprostatectomía radical. Se realizó una búsqueda en 8 bases de datos hasta el 26 de octubre de 2022, se evaluó la calidad metodológica y el riesgo de sesgo de 14 estudios incluidos (n=1236), se calculó la evidencia y el metaanálisis. El entrenamiento redujo significativamente los síntomas de incontinencia urinaria en comparación con un grupo control (DME=−2,80; IC 95%=−5,21 a −0,39; p=0,02), con heterogeneidad significativa (I2=83%; p=<0,0001) y evidencia moderada. Además, presentó evidencia moderada para mejorar la calidad de vida, y muy baja para mejorar la función sexual y fuerza de suelo pélvico. Estos resultados deben ser observados con precaución debido a la heterogeneidad significativa de los estudios analizados. (AU)

This study aimed to evaluate the effectiveness of early pelvic muscle training in reducing urinary incontinence symptoms, improving quality of life, sexual function, and increasing pelvic floor strength in post-radical prostatectomy patients. A search was carried out in 8 databases until October 26, 2022, the methodological quality and the risk of bias of 14 included studies (n=1236) were evaluated, moreover, the evidence and the meta-analysis were calculated. The intervention significantly reduced urinary incontinence symptoms compared to a control group (SMD=−2.80, 95% CI=−5.21 to −0.39, P=.02), with significant heterogeneity (I2=83%; P=<.0001) and moderate evidence. In addition, it presented moderate evidence to improve quality of life, and very low evidence to improve sexual function and pelvic floor strength. These results should be viewed with caution due to the significant heterogeneity of the studies analysed. (AU)

Influencia de la capacidad manipulativa en la calidad de vida y actividades de la vida diaria en la esclerosis múltiple / Influence of manipulative skills on quality of life and activities of daily living in multiple sclerosis

Introducción: Más de un 50% de los pacientes diagnosticados con esclerosis múltiple (EM) comunican problemas con la función manipulativa e impedimentos en su vida diaria a causa de esta alteración. Por ello, el objetivo del presente estudio es determinar la afectación que la fuerza de pinza, la fuerza de presa y la destreza manipulativa ejercen sobre la calidad de vida y la autonomía personal de las personas diagnosticadas de EM, y estudiar si existe diferencia de estos aspectos entre los distintos tipos de esta enfermedad. Sujetos y métodos: Se contó con una muestra total de 126 participantes, de los cuales 57 fueron controles, y 69, casos. A todos ellos se les evaluó con el Multiple Sclerosis Quality of Life-54, el Nine-Hole Peg Test, la dinamometría de pinza y de presa para la medición de la fuerza, y el índice de Barthel para la evaluación de las actividades básicas de la vida diaria. Resultados: Las personas con EM presentaron peores fuerza de pinza, fuerza de presa, destreza manipulativa, desempeño en actividades básicas de la vida diaria y calidad de vida (p < 0,001). La fuerza de presa es un factor condicionante en el desempeño de actividades básicas y calidad de vida en personas con EM. En cuanto al tipo de EM, el tipo remitente-recurrente presentó mejores valores (p < 0,001).Conclusiones: Los hallazgos de este estudio apuntan a que los pacientes diagnosticados con EM presentan una disminución en la fuerza de pinza, la fuerza de presa, la destreza manipulativa, la calidad de vida y la autonomía en las actividades de la vida diaria en comparación con la población sana.(AU)

Introduction: More than 50% of patients diagnosed with multiple sclerosis report problems with manipulative function and impairments in their daily lives due to this disorder. Therefore, the aim of the present study is to determine how pinch strength, prey strength and manipulative dexterity affect the quality of life and personal autonomy of people diagnosed with multiple sclerosis and to study whether there is a difference in these aspects between different types of multiple sclerosis.Subjects and methods: There was a total sample of 126 participants, of which 57 were controls and 69 cases. All of them were assessed with a Multiple Sclerosis Quality of Life-54 test, Nine-Hole Peg Test and Barthel Index.Results: People with multiple sclerosis have worse pinch strength, prey strenght, manipulative dexterity, performance in basic activities of daily living and quality of life (p < 0.001). Prey strength is a conditioning factor for performance and quality of life in people with multiple sclerosis. As for the type of multiple sclerosis, relapsing-remitting multiple sclerosis presented better values (p < 0.001).Conclusions: The findings of this study point to the fact that patients diagnosed with multiple sclerosis have a decrease in prey strength, pinch strength, manipulative dexterity, quality of life and autonomy in activities of daily living compared to the healthy population.(AU)

Adaptación y validación del Voice Handicap Index y su versión abreviada al español rioplatense de Argentina

Objetivo: Este estudio tuvo como objetivo principal validar el Voice Handicap Index (VHI) y su versión abreviada (VHI-10) adaptados al español rioplatense de Argentina, con objetivos específicos centrados en evaluar su fiabilidad y validez. Metodología: La adaptación cultural incluyó técnicas de traducción directa, síntesis y retrotraducción, evaluación de la equivalencia semántica y aplicación a un grupo piloto. Para la validación se evaluó la fiabilidad de ambos índices adaptados mediante la consistencia interna (coeficiente alfa de Cronbach) y la estabilidad test-retest (prueba de Bland-Altman, CCI y r de Spearman). Además, se examinó la validez de criterio y de constructo. 213 sujetos participaron en la validación del índice adaptado de 30 ítems (123 disfónicos; 90 de control); 113, en la del índice abreviado (63 disfónicos; 50 de control). Resultados: Se constituyó el Índice de Desventaja Vocal (IDV) como la versión adaptada del VHI al español rioplatense de Argentina. Ambos índices demostraron excelente consistencia interna (IDV-30 α = 0,96; IDV-10 α = 0,92) y estabilidad y concordancia (IDV-30 CCI = 0,95; IDV-10 CCI = 0,96). Se halló alta correlación entre los puntajes de ambos índices y la autoevaluación de la severidad de la disfonía de los participantes (r = 0,85). Ambos índices demostraron capacidad de diferenciar entre individuos con disfonía y sujetos sanos (p< 0,001). El análisis factorial reveló tres factores para el IDV-30 y un factor para el IDV-10. Conclusiones: El IDV-30 e IDV-10 presentan grados adecuados de fiabilidad y validez. Ambos pueden ser incluidos en protocolos de valoración de la función vocal por profesionales de Argentina.

Aim: This study aimed to validate the Voice Handicap Index (VHI) and its abbreviated version (VHI-10) adapted into Rioplatense Spanish from Argentina, with specific goals centered on assessing their reliability and validity. Methods: Cultural adaptation involved direct translation, synthesis and back-translation techniques, followed by an assessment of semantic equivalence and application to a pilot group. For the validation process, the reliability of both adapted indices was assessed through measures of internal consistency (Cronbach's alpha coefficient) and test-retest stability (Bland-Altman test, ICC and Spearman's correlation coefficient). Additionally, we conducted analyses to asses criterion and construct validity. 213 subjects participated in the validation of the adapted 30-items index, (123 with dysphonia; 90 from control group); 113, in the abbreviated version (63 with dysphonia; 50 from control group). Results: The "Índice de Desventaja Vocal" (IDV) was established as the adapted version of the VHI into Rioplatense Spanish from Argentina. Both indeces exhibited excellent internal consistency (IDV-30 α = 0,96; IDV-10 α = 0,92) and satisfactory stability and agreement (IDV-30 CCI = 0,95; IDV-10 CCI = 0,96). Regarding validity, a strong correlation was observed between the scores of both indeces and the participant's self-assessment of dysphonia degree (r = 0,85). Both indices effectively differentiated between individuals with dysphonia and healthy subjects (p< 0,001). Factor analysis revealed three factors for the IDV-30 and one factor for the IDV-10. Conclusion: The IDV-30 and IDV-10 demonstrate satisfactory levels of reliability and validity. Both indices can be incorporated into the assessment protocols for evaluating the vocal function by professionals in Argentina.

Experiences of patients with Parkinson's disease belonging to an association. A qualitative approach.

INTRODUCTION: Parkinson's disease (PD) affects the physical, cognitive, emotional, and social domains of people who suffer it. A good strategy for patients is to belong to an Association, using the services they offer. OBJECTIVE: The aim of this study was to explore the experiences and perceptions of patients with PD in a Parkinson's Association. METHODS: A sample of participants with PD who met the inclusion criteria was selected through purpose and theoretical sampling. Semi-structured qualitative interviews were used to collect the data, which was analyzed by thematic phenomenological analysis. Different strategies such as triangulation between researchers were used to ensure methodological rigor. RESULTS: The data analyzed from 10 participants led to two themes: the context of the Association, where the importance of interdisciplinary treatments and the relationship with other patients is collected; and how they see their future, which describes the future perspectives that patients with PD have. DISCUSSION: Patients agree on the importance of belonging to the Association, feeling part of a group, while benefiting from receiving therapies from the interdisciplinary team. The Association plays a relevant role in the evolution of the disease, as it influences how patients imagine their future. Developing strategies based on a good therapeutic alliance with professionals at the service of patients promotes the empowerment, adherence and continuity of treatments at home, which results in improving the quality of life of patients with PD.

Determinants associated with activation in patients with oral anticoagulant treatment: A cross-sectional study.

AIMS: The terms "patient activation" and "patient empowerment" are used to describe the extent to which individuals are able to manage their own healthcare. Health outcomes and quality of life improve in patients who are more active in health care. The aim of this study was to identify sociodemographic, clinical, sociological and psychological determinants associated with activation in a group of chronically anticoagulated patients. METHODS: Cross-sectional study of patients treated with oral antivitamin-k drugs attended at a specialized outpatient anticoagulant unit between November 2021 and June 2022. The main dependent variable was the level of patient activation according to the 13-item Patient Activation Measure (PAM-13). Simple and multiple linear regression models were conducted to identify the determinants associated with PAM-13 score. RESULTS: A total of 137 patients who met all the inclusion criteria were recruited for the study. The mean age was 59.6 years (SD 13.8; range 22-86) and 60.6% were male. Sixty per cent presented a level IV of activation according to the PAM-13 scale. Mean patient activation score was 73.9 (SD 15.4). The factors independently associated with significantly lower activation were: emergency department visits in the past 12 months, intermediate social risk, anxiety symptoms, stress symptoms and low self-efficacy. CONCLUSIONS: Five determinants were found to be associated with activation. Knowing the factors that modify the level of activation can help to identify subgroups of chronic anticoagulated patients who are less likely to engage in self-management and are therefore candidates for tailored educational interventions.

Childhood cancer survivors: current challenges.

Rates of childhood cancer survival in developed countries have risen to over 80-85 %. In consequence, the population of childhood cancer survivors (CCS) has grown considerably. Nevertheless, CCS present a high morbidity and mortality due to cancer or its treatment, with an increased risk of premature mortality, second primary tumors and late side effects, both physical and psychosocial, all of which decrease the quality of life. Long-term follow-up (LTFU) of CCS is recommended to prevent, detect and treat those health problems. Despite the advances achieved, the management of CCS is still not optimal. Among the areas for improvement discussed in this manuscript are: (1) Quantifying the real burden of morbimortality, by implementing new frequency measures (mean cumulative count and cumulative burden), to obtain more accurate assessments, and using simulation models, to determine individual risks; (2) Assessing the impact of risk factors for late side effects, related to the patient, tumor type, treatments, lifestyle, comorbidities, genetics and ageing; (3) Considering the impact of the international harmonisation of long-term follow-up guidelines, to generate homogeneous, evidence-based recommendations and an individualized LTFU and, (4) Challenges to LTFU implementation, considering models of care adapted to patient risk and needs, with special attention to the transition to adult-care follow-up. Finally, we comment on the situation of CCS in Spain and consider future prospects for improving the health and quality of life of this population.

Mortalidad, Secuelas Clínicas y Calidad de Vida Luego del Alta de Unidades de Cuidados Intensivos en Pacientes con COVID-19: Estudio Multicéntrico Descriptivo en Argentina.

OBJECTIVE: Patients with COVID-19 who require hospitalization in an intensive care unit, in addition to being at risk of presenting premature death, have higher rates of complications. This study aimed to describe mortality, rehospitalizations, quality of life, and symptoms related to postintensive care syndrome (PICS) and prolonged COVID-19 in patients with COVID-19 discharged from the intensive care unit in hospitals in Argentina. METHODS: A cross-sectional study was conducted in 4 centers in the Autonomous City and province of Buenos Aires as of December 2022. The variables of interest were mortality after discharge, rehospitalization, health-related quality of life, post-COVID-19-related symptoms, cognitive status, and PICS. Data collection was by telephone interview between 6 and 18 months after discharge. RESULTS: A total of 124 patients/families were contacted. Mortality was 7.3% (95% CI: 3.87-13.22) at 14.46 months of follow-up after discharge. Patients reported a reduction of the EQ-5D-3L visual analog scale of 13.8 points, reaching a mean of 78.05 (95% CI: 73.7-82.4) at the time of the interview. Notably, 54.4% of patients (95% CI: 41.5-66.6) reported cognitive impairment and 66.7% (95% CI: 53.7-77.5) developed PICS, whereas 37.5% (95% CI: 26-50.9) had no symptoms of prolonged COVID-19. CONCLUSION: The results showed a significant impact on the outcomes studied, consistent with international evidence.

Perceived quality of life by patients with immune-mediated inflammatory diseases treated with biological therapies. SACVINFA study.

OBJECTIVES: To evaluate health-related quality of life perceived by patients with the most prevalent immune-mediated inflammatory diseases in Spain: inflammatory bowel disease (IBD), psoriasis (Ps), psoriatic arthritis (AP), rheumatoid arthritis (RA), and spondyloarthropathies (SpAs), and to determine the factors that influence patient quality of life. METHODS: The SACVINFA study (SA=satisfaction, CV=quality of life, IN=immune-mediated, FA=pharmacy) consisted of an observational study conducted in 4 hospitals in the Community of Madrid. A cross-sectional analysis was made for adult patients diagnosed with an immune-mediated inflammatory disease who attended the Pharmacy Service. Quality of life was assessed using the EQ-5D-5L questionnaire (mobility, self-care, usual activities, pain/discomfort, and anxiety/depression) and specific questionnaires: SIBDQ-9, DLQI, PsAQoL, QoL-RA, and ASQoL. RESULTS: A total of 578 patients were analysed (inflammatory bowel disease=25.3%; psoriasis=19.7%; spondyloarthropathies=18.7%; rheumatoid arthritis=18.5%; psoriatic arthritis=17.8%). The mean age (standard deviation) was 49.8 (12.3) years and 50.7% were male. The average score (standard deviation) for the global EQ-5D-5L was 0.771 (0.2) and the mean (standard deviation) visual analogue scale score was 71.5 (20.0). Type of immune-mediated inflammatory diseases was associated with differences in quality of life showing psoriasis and inflammatory bowel disease higher values of EQ5D-5L than psoriatic arthritis, rheumatoid arthritis, and spondyloarthropathies, p<.05 in all comparisons. Patients with RA, IBD, and Ps achieved 70% of the maximum score, while patients with PsA and SpAs did not reach 50% of the maximum possible score. Female gender, a state of moderate/severe disease severity, an older age, and a higher number of previous treatments were correlated with worse quality of life. Conversely, persistence to current treatment correlated with better quality of life. CONCLUSIONS: Patients with immune-mediated inflammatory diseases have markedly affected quality of life, mainly in the pain/discomfort dimension, especially in those immune-mediated inflammatory diseases with a rheumatological component.

Patient-reported outcome measures for assessing atopic dermatitis in clinical practice. / Medidas de resultados comunicados por el paciente para evaluar la dermatitis atópica.

Atopic dermatitis is a chronic skin condition that affects up to 20% of children and 10% of adults worldwide. Due to the high burden of dermatological signs and symptoms, atopic dermatitis has a significant impact on the quality of life of patients and their families. In the absence of objective measures to accurately assess severity and symptom burden, patient-reported outcome measures are essential to monitor the impact and progression of the disease, as well as the efficacy of treatments. Although there are currently no standardised guidelines for their use in clinical practice, there are some initiatives, such as the Harmonise Outcome Measures for Eczema and Vivir con Dermatitis Atópica, that can provide guidance. As healthcare systems move towards value-based healthcare models, patient-reported measures are becoming increasingly important for incorporating the patient perspective and improving the quality of healthcare services. The use of these measures can help monitor disease activity and guide treatment decisions. This article discusses the impact of atopic dermatitis and describes the patient-reported outcome measures commonly used in atopic dermatitis and the recommendations of the initiatives that have selected a core set of measures to best assess atopic dermatitis in clinical practice. Considering the recommendations of these initiatives and based on our experience in clinical practice, we propose the use of the Dermatology Life Quality Index to assess the impact of the disease on quality of life, the Patient-Oriented Eczema Measure to assess symptom severity, and the Numerical Rating Scale or the Visual Analogue Scale to measure itch intensity. To systematize the administration of these measures and to integrate them into hospital information systems and medical records, we emphasise the importance of telemedicine platforms that allow the electronic administration of these instruments.

Postintensive care syndrome in patients and family members. Analysis of COVID-19 and non-COVID-19 cohorts, with face-to-face follow-up at three months and one year.

OBJECTIVE: Compare prevalence and profile of post-intensive care patient (P-PICS) and family/caregiver (F-PICS) syndrome in two cohorts (COVID and non-COVID) and analyse risk factors for P-PICS. DESIGN: Prospective, observational cohort (March 2018-2023), follow-up at three months and one year. SETTING: 14-bed polyvalent Intensive Care Unit (ICU), Level II Hospital. PATIENTS OR PARTICIPANTS: 265 patients and 209 relatives. Inclusion criteria patients: age > 18 years, mechanical ventilation > 48 h, ICU stay > 5 days, delirium, septic shock, acute respiratory distress syndrome, cardiac arrest. Inclusion criteria family: those who attended. INTERVENTIONS: Follow-up 3 months and 1 year after hospital discharge. MAIN VARIABLES OF INTEREST: Patients: sociodemographic, clinical, evolutive, physical, psychological and cognitive alterations, dependency degree and quality of life. Main caregivers: mental state and physical overload. RESULTS: 64.9% PICS-P, no differences between groups. COVID patients more physical alterations than non-COVID (P = .028). These more functional deterioration (P = .005), poorer quality of life (P = .003), higher nutritional alterations (P = .004) and cognitive deterioration (P < .001). 19.1% PICS-F, more frequent in relatives of non-COVID patients (17.6% vs. 5.5%; P = .013). Independent predictors of PICS-P: first years of the study (OR: 0.484), higher comorbidity (OR: 1.158), delirium (OR: 2.935), several reasons for being included (OR: 3.171) and midazolam (OR: 4.265). CONCLUSIONS: Prevalence PICS-P and PICS-F between both cohorts was similar. Main factors associated with the development of SPCI-P were: higher comorbidity, delirium, midazolan, inclusion for more than one reason and during the first years.

Real-World clinical, psychosocial and financial burden of atopic dermatitis: results from the Spanish cohort of the MEASURE-AD trial. / Carga clínica, psicosocial y económica de la dermatitis atópica en vida real: resultados de la cohorte española del estudio MEASURE-AD.

BACKGROUND: Atopic dermatitis (AD) is one of the most prevalent skin diseases, but there are numerous knowledge gaps surrounding the impact this disease has on quality of life (QoL), mental health, and out-of-pocket expenses involved in the management of AD. The available scientific evidence on the multidimensional burden of AD is usually based on studies with measures reported by patients themselves. METHODS: In this context, the MEASURE-AD trial was developed as a cross-sectional, multicenter, multinational trial using patient- and physician-reported measures to characterize the multidimensional burden of AD in adults with moderate-to-severe AD. RESULTS: This paper presents the results of the Spanish cohort. We found that Spanish adults with moderate-to-severe AD and high EASI score (21.1-72) had a significantly increased disease burden, high severity of symptoms such as itch and sleep disturbances, impaired mental health and QoL, higher use of health care resources, and more out-of-pocket expenses than patients with low EASI scores (0-7 or 7.1-21). CONCLUSIONS: This study provides information to better understand disease burden, and identify aspects to be improved in the management of AD.