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)

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)

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.

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.

Long-term quality of life after hybrid robot-assisted and open Ivor Lewis esophagectomy for esophageal cancer in a single center: a comparative analysis.

PURPOSE: Due to improved survival of esophageal cancer patients, long-term quality of life (QoL) is increasingly gaining importance. The aim of this study is to compare QoL outcomes between open Ivor Lewis esophagectomy (Open-E) and a hybrid approach including laparotomy and a robot-assisted thoracic phase (hRob-E). Additionally, a standard group of healthy individuals serves as reference. METHODS: With a median follow-up of 36 months after hRob-E (n = 28) and 40 months after Open-E (n = 43), patients' QoL was assessed using the European Organization for Research and Treatment of Cancer (EORTC) QoL Questionnaire Core 30 (QLQ-C30) and the EORTC Esophagus specific QoL questionnaire 18 (QLQ-OES18). RESULTS: Patients showed similar clinical-pathological characteristics, but hRob-E patients had significantly higher ASA scores at surgery (p < 0.001). Patients and healthy controls reported similar global health status and emotional and cognitive functions. However, physical functioning of Open-E patients was significantly reduced compared to healthy controls (p = 0.019). Operated patients reported reduced role and social functioning, fatigue, nausea and vomiting, dyspnea, and diarrhea. A trend towards a better pain score after hRob-E compared to Open-E emerged (p = 0.063). Regarding QLQ-OES18, hRob-E- and Open-E-treated patients similarly reported eating problems, reflux, and troubles swallowing saliva. CONCLUSIONS: The global health status is not impaired after esophagectomy. Despite higher ASA scores, QoL of hRob-E patients is similar to that of patients operated with Open-E. Moreover, patients after hRob-E appear to have a better score regarding physical functioning and a better pain profile than patients after Open-E, indicating a benefit of minimally invasive surgery.

The effects of gender-affirming hormone therapy and mastectomy on psychopathology, body image, and quality of life in adults with gender dysphoria who were assigned female at birth.

PURPOSE: Individuals with gender dysphoria (GD) may request hormone therapy and various surgical operations to change their physical characteristics. The present study aimed to investigate the effects of two treatments, mastectomy and gender-affirming hormone therapy (GAHT), on adults with GD who were assigned female at birth (GD AFAB). METHODS: In this cross-sectional study, we gathered data from a total of 269 individuals in three groups: (a) untreated group (n = 121), (b) GAHT group (n = 84) who had been receiving treatment for at least 6 months, and (c) GAHT-MAST group (n = 64) who had been using GAHT for at least 6 months and had undergone mastectomy at least 3 months prior. All participants were asked to complete the Symptom Checklist-90-Revised (SCL-90-R), the Body Uneasiness Test (BUT), and the World Health Organization's Quality of Life Questionnaire- Brief Form, Turkish Version (WHOQOL-BREF-Tr). RESULTS: We found that individuals in the untreated group had higher psychopathological symptoms and body uneasiness scores, and lower quality of life scores compared to both GAHT and GAHT-MAST groups. There was no difference in psychopathology between the GAHT-MAST group and the GAHT group, but body uneasiness scores were lower, and quality of life scores were higher in the GAHT-MAST group. CONCLUSION: Our study suggests that individuals receiving GAHT improved mental health, body satisfaction, and overall quality of life. Combining mastectomy with GAHT may further enhance these benefits.

Understanding the influence of different proxy perspectives in explaining the difference between self-rated and proxy-rated quality of life in people living with dementia: a systematic literature review and meta-analysis.

PURPOSE: Proxy assessment can be elicited via the proxy-patient perspective (i.e., asking proxies to assess the patient's quality of life (QoL) as they think the patient would respond) or proxy-proxy perspective (i.e., asking proxies to provide their own perspective on the patient's QoL). This review aimed to identify the role of the proxy perspective in explaining the differences between self-rated and proxy-rated QoL in people living with dementia. METHODS: A systematic literate review was conducted by sourcing articles from a previously published review, supplemented by an update of the review in four bibliographic databases. Peer-reviewed studies that reported both self-reported and proxy-reported mean QoL estimates using the same standardized QoL instrument, published in English, and focused on the QoL of people with dementia were included. A meta-analysis was conducted to synthesize the mean differences between self- and proxy-report across different proxy perspectives. RESULTS: The review included 96 articles from which 635 observations were extracted. Most observations extracted used the proxy-proxy perspective (79%) compared with the proxy-patient perspective (10%); with 11% of the studies not stating the perspective. The QOL-AD was the most commonly used measure, followed by the EQ-5D and DEMQOL. The standardized mean difference (SMD) between the self- and proxy-report was lower for the proxy-patient perspective (SMD: 0.250; 95% CI 0.116; 0.384) compared to the proxy-proxy perspective (SMD: 0.532; 95% CI 0.456; 0.609). CONCLUSION: Different proxy perspectives affect the ratings of QoL, whereby adopting a proxy-proxy QoL perspective has a higher inter-rater gap in comparison with the proxy-patient perspective.

Effectiveness of Exercise Interventions on Body Composition, Exercise Capacity, Fatigue, and Quality of Life in Patients with Liver Cirrhosis: A Meta-Analysis of Randomized Controlled Trials.

BACKGROUND: Diminished muscle protein synthesis in cirrhosis leads to reduced strength and mass, impacting daily activities and overall quality of life. AIMS: This study aimed to examine the effectiveness of exercise intervention in body composition, exercise capacity, fatigue, and quality of life in patients with liver cirrhosis. METHODS: A systematic search of medical databases, including PubMed, Embase, Cochrane, and CINAHL, was executed from their inception to November 2022. The inclusion criteria were randomized controlled trials comparing exercise interventions with a control group that did not receive exercise interventions. RESULTS: From the initially identified 2,565 articles, eight studies with a total of 220 patients were eligible for inclusion in this meta-analysis. According to the meta-analysis, exercise significantly improved the six-minute walk distance (6MWD) by 68.93 m (95% CI 14.29-123.57) compared to the control group. Furthermore, the subgroup analysis revealed that combing exercise with amino acid supplementation had a greater positive effect on the 6MWD (MD = 144.72, 95% CI 87.44-202.01). Exercise also significantly increased thigh circumference (MD = 1.26, 95% CI 0.12-2.39) and the thigh ultrasound average compression index (MD = 0.07, 95% CI 0.00-0.14). Moreover, exercise significantly decreased fatigue levels by 0.7 points in patients with liver cirrhosis (95% CI 0.38-1.03). However, no significant effects were observed on body mass index (BMI), fat mass, fat-free mass, and quality of life. CONCLUSIONS: Exercise can improve exercise capacity, thigh muscle thickness, and fatigue in patients with cirrhosis, but it does not have a significant impact on fat mass, BMI, or quality of life.

Medial sural artery perforator free flap versus radial forearm free flap in oral cavity reconstruction and donor site morbidity.

OBJECTIVE: Radial Forearm Free flap (RFFF) is widely used in head and neck reconstruction, yet its donor site defect remains a significant drawback. The Medial Sural Artery Perforator Free Flap (MSAPFF) is considered an alternative flap to RFFF. This study aims to comprehensively analyze their characteristics, outcomes, and their impact on patient quality of life. METHODS: All patients who underwent oral cavity reconstruction using RFFF and MSAPFF between February 2017 and April 2023 were included in this study. Flap characteristics, outcomes and post-operative complications were recorded and compared. Subjective donor site morbidity, aesthetic and functional results, and quality of life were also analyzed. RESULTS: The study included 76 patients: 37 underwent reconstruction with RFFF, and 39 with MSAPFF. There was no significance difference between the RFFF and MSAPFF regarding the success rate (97.2% vs 97.4%), flap size (4.8 × 8.8 cm2 vs 5 × 9.8 cm2), hospital of stay (15.5 days vs 13.5 days) and recipient site complications (P > 0.05). However, MSAPFF showed larger flap thickness (P = 0.001), smaller arterial caliber (P = 0.008), shorter pedicle length (P = 0.001), and longer harvesting time (P < 0.001). No significant difference was observed between the pre-and postoperative ranges of wrist and ankle movements or in recipient site complications. MSAPFF showed a significant difference in donor site morbidity (P < 0.05). CONCLUSION: The MSAPFF is an excellent alternative to the RFFF for repairing oral cavity defects, with additional advantage of a well-hidden scar on the posterior calf, a larger flap thickness, accepted pedicle length and arterial caliber. However, one should consider the harvesting time and surgical skills required in comparison to the RFFF. CLINICAL RELEVANCE: The study highlights the importance of the MSAPFF as an alternative option for RFFF with less donor site morbidity and high success rate in oral cavity reconstruction and improved patient Quality of life after ablative surgery.

Quality of life in Prolactinoma: A systematic review.

BACKGROUND: Prolactinomas are common tumours that significantly reduce quality-of-life (QOL) due to sellar mass effect, secondary hypogonadism, and the peripheral effects of prolactin. Understanding the factors that influence QOL would provide insights into therapeutic targets to optimise patient outcomes and improve wellbeing in prolactinoma. METHODS: A systematic review was performed in accordance with the PRISMA statement. Studies that reported patient QoL using validated metrics were included. Bias and methodological rigour were assessed using the MINORS criteria. RESULTS: A total of 18 studies were identified studies were available for review, comprising 877 patients. Most were small cross-sectional studies at high risk of bias. Prolactinoma exhibit worse QOL than healthy controls, particularly mental and psychosocial wellbeing. QOL is also worse than patients with non-functional adenomas, but better than those with Cushing's disease and acromegaly. QOL correlates with prolactin levels, and approaches population baseline with prolonged biochemical control. Dopamine agonists and surgery both improve overall QOL, however improvements are more rapid with surgery. CONCLUSION: Poor quality of life in prolactinoma is multifactorial, related to biochemical control, side effects of therapy, and sellar mass effect. Targeting persistent symptoms, reducing healthcare costs, and reducing side-effects of therapy are avenues to improving QOL in patients with prolactinoma.

Exploring the Pathways of Diabetes Foot Complications Treatment and Investigating Experiences From Frontline Health Care Professionals: Protocol for a Mixed Methods Study.

BACKGROUND: Diabetes affects more than 4.3 million individuals in the United Kingdom, with 19% to 34% developing diabetes-related foot ulceration (DFU) during their lifespan, which can lead to an amputation. In the United Kingdom, every week, approximately 169 people have an amputation due to diabetes. Preventing first-ever ulcers is the most effective strategy to reduce the occurrence of diabetes-related amputations, but research in this space is lacking. OBJECTIVE: This protocol seeks to document the experiences and perspectives of frontline health care professionals who work with people who have diabetes and diabetes-related foot problems. Special attention is given to their perceptions of barriers to effective care, their views about barriers to effective and inclusive engagement with people with diabetes, and their experience with the first-ever DFU. Another aspect of the study is the focus on whether clinical management is affected by data sharing, data availability, and interoperability issues. METHODS: This is a mixed methods explanatory protocol, which is sequential, and its purpose is to use the qualitative data to explain the initial quantitative data collected through a survey of frontline health care professionals. Data analysis of quantitative data will be completed first and then synthesized with the qualitative data analysis. Qualitative data will be analyzed using the framework method. This study will use joint displays to integrate the data. Ethical approval has been granted by the ethics committee of Staffordshire University. RESULTS: The quantitative data collection started in March 2023 and will close in May 2024. The qualitative interviews commenced in November 2023 with volunteer participants who initially completed the survey. CONCLUSIONS: This study's survey focuses on data interoperability and the interviews focus more on the perspectives and experiences of clinicians and their perceived barriers for the effective management of diabetes foot ulcers. Including a geographically relevant and diverse cohort of health care professionals that spans a wide range of roles and care settings involved in diabetes-related foot care is very important for the successful application of this protocol. Special care is given to advertise and promote participation as widely as possible. The qualitative part of this protocol is also limited to 30-40 interview participants, as it is not realistic to interview higher numbers, due to time and resource constraints. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/54852.

Impacts of a Self-directed Social Resources Study Program on Negative Symptoms and Quality of Life in Schizophrenia Outpatients: A Randomized Controlled Trial.

To clarify whether a self-directed study program on social resources improves negative symptoms, quality of life (QOL), and social participation among outpatients with schizophrenia. Eighty-six participants were randomly divided into intervention and control groups. In addition to the usual day programs, the intervention group participated in a self-directed study program on social resources once a week for eight weeks. The control group participated only in the usual day programs. Negative symptoms and QOL were assessed at baseline and post-intervention using the Positive and Negative Syndrome Scale (PANSS) and the WHO Quality of Life-BREF (WHOQOL-BREF), respectively. Social participation was also assessed. After the intervention, there were no significant differences in the PANSS negative symptoms and WHOQOL-BREF total scores between the two groups. Within-group, PANSS negative symptom scores significantly improved in the intervention group (p < 0.05), but not in the control group. The WHOQOL-BREF physical health subscale scores improved significantly only in the intervention group (p < 0.05). Social participation remained unchanged between the intervention and control groups. The results suggest that a self-directed study program on social resources may be useful for improving negative symptoms and physical QOL in outpatients with schizophrenia. The findings highlight the potential of such interventions to bridge the existing gap in psychosocial rehabilitation strategies for this population.

Beyond the Diagnosis: Evaluation of Quality-of-Life Measures and Family Functioning in SLC6A1-Related Neurodevelopmental Disorder.

BACKGROUND: SLC6A1-related neurodevelopmental disorder (SLC6A1-NDD) is a rare genetic disorder linked to autism spectrum disorder, epilepsy, and developmental delay. In preparation for future clinical trials, understanding how the disorder impacts patients and their families is critically important. Quality-of-life (QoL) measures capture the overall disease experience of patients. This study presents QOL findings from our SLC6A1-NDD clinical trial readiness study and the Simons Searchlight SLC6A1-NDD registry. METHODS: We compiled QoL data from participants with SLC6A1-NDD enrolled in our clinical trial readiness study (n = 20) and the Simons Searchlight registry (n = 32). We assessed the distribution of scores on the Quality-of-Life Inventory-Disability (QI Disability), Quality of Life of Childhood Epilepsy (QOLCE-55), and Pediatric Quality of Life Inventory Family Impact Module (PedsQL-FIM) administered to caregivers. RESULTS: In our cohort of 52 participants, the mean QI Disability total score was 73 ± 12.3, the QOLCE-55 mean total score was 49 ± 17.1, and the mean total PedsQL score was 51 ± 17.6. Longitudinal QoL scores for a subset of participants (n = 7) demonstrated a reduction in the Family Relationship domain of PedsQL-FIM (Δ-10.0, P = 0.035). Bootstrap resampling of total scores displays nonoverlapping 95% confidence intervals for the 10th, 50th, and 90th percentiles on all three measures. CONCLUSIONS: This is the first study to investigate QoL measures for SLC6A1-NDD. Findings suggest that scores within the 10th percentile's confidence interval could be clinically significant, referring to QI-Disability scores of <61, QOLCE-55 scores of <46, and PedsQL-FIM scores of <42. Future validation studies are needed.

Patient factors associated with novel EAR-Q appearance, psychosocial, and social scales: A cross-sectional study and regression analysis.

INTRODUCTION: The EAR-Q is a rigorously validated patient-reported outcome measure, which evaluates ear appearance and health-related quality of life (HRQL) in patients with congenital or acquired ear conditions. The aim of this study was to conduct an exploratory analysis to examine the factors associated with EAR-Q appearance and HRQL scale scores. METHODS: In this study, 862 participants, aged 8-29 years, with congenital or acquired ear conditions, completed the EAR-Q as part of an international field-test study. Patients responded to demographic and clinical questions as well as the EAR-Q. Univariable and multivariable linear regression analyses were used to determine factors that were significant predictors for the scores on the EAR-Q Appearance, Psychological, and Social scales. RESULTS: Most participants were men (57.4%), awaiting treatment (55.0%), and had a microtia diagnosis (70.4%), with a mean age of 13 (±4) years. Worse ear appearance scores (p < 0.02) were associated with male gender, microtia, no history of treatment, ear surgery within 6 months, unilateral involvement, and greater self-reported ear asymmetry. Decreased psychological scores (p < 0.01) were associated with increasing participant age, no treatment history, recent ear surgery, and dissatisfaction with ears matching or overall dissatisfaction. Lower social scores (p ≤ 0.04) were associated with no treatment history, those awaiting surgery, ear surgery within the last 6 months, bilateral involvement, and self-reported ears matching or overall appearance. CONCLUSION: This analysis identified patient factors that may influence ear appearance and HRQL scale scores. These findings provide evidence of patient factors that should be adjusted for when undertaking future observational research designs using the EAR-Q in this patient population.

Trajectories of health-related quality of life following road trauma: Latent growth mixture modeling across a 12-month cohort study.

INTRODUCTION: Health-related quality of life (HRQoL) should be considered when evaluating the burden of road trauma (RT) injuries. This study aimed to identify distinct HRQoL trajectories following minor to severe RT injury and determine characteristics of trajectory membership. METHODS: This prospective inception cohort study recruited 1480 RT survivors from three emergency departments in British Columbia, Canada (July 2018 - March 2020). HRQoL outcome was measured with the Short Form 12 survey (SF-12) and the 5-level version of the EuroQol instrument (EQ-5D-5L) at baseline (pre-injury) and at 2, 4, 6, and 12 months post-injury. Potential predictors of outcome trajectory included sociodemographic, psychological, medical, crash, and injury factors collected at baseline. We used a latent growth mixture model to identify distinct recovery trajectories and multinomial logistic regression to determine predictors of trajectory membership. RESULTS: Three distinct HRQoL trajectories were identified for SF-12 subscales and EQ-5D-5L measures: Low/Moderate-Stable, High-Large decline, and High-Slight decline. Participants in the Low/Moderate-Stable trajectory had persistent low to moderate HRQoL before and after the injury. Those in the High-Large decline trajectory had good pre-injury HRQoL followed by persistently decreased HRQoL afterwards. The High-Slight decline trajectory was characterized by good pre-injury HRQoL and only a slight decline afterwards. Participants in the Low/Moderate-Stable and High-Large decline trajectories were considered at risk of permanently poor HRQoL following RT injury given their low HRQoL over a long period of time. Characteristics that placed participants in the Low/Moderate-Stable trajectory were older age, female gender, poor pre-injury health (medical comorbidity, prescribed medication use, complaints in the injured body area(s)), pre-injury somatic symptoms, pain catastrophizing or psychological distress, injury severity (ISS) and injury pain. Patients with head injury were less likely to be in the Low/Moderate-Stable trajectory. Risk factors for membership in the High-Large decline trajectory included older age (for physical HRQoL), younger age (for mental HRQoL), female gender, living alone, pre-injury psychological distress, ISS, injury pain, no expectations for a fast recovery, as well as head injuries, spine/back injuries or lower extremity injuries. CONCLUSIONS: This study highlighted the heterogeneity of HRQoL trajectories following RT injury and the importance of considering differences between characteristics of survivors. In addition to injury type and severity, outcome is related to demographic factors, pre-injury health and pre-injury psychological factors.

Quality of life of families and siblings of children with cerebral palsy treated at a reference neurorehabilitation center in Brazil.

OBJECTIVES: To investigate the associations between caregivers' burden, family quality of life (QoL), and siblings' QoL in Brazilian families of children with cerebral palsy, and to analyze siblings' QoL using as a parameter the QoL of typically developed Brazilian children. METHODS: It was a cross-sectional study. The 212 families, 212 caregivers and 131 siblings completed the Family Quality of Life Scale, Burden Interview, and KIDSCREEN-27 Child and Adolescent Version and Parents Version questionnaires at a neurorehabilitation center in southeast Brazil. Univariable and multivariable models were used. RESULTS: Family QoL significantly worsened as caregivers' burden increased (95 % CI -0.66 to -0.38). Caregivers' burden was significantly lower with increasing family QoL scores (95 % CI -0.52 to -0.30). Self-reported siblings' QoL was significantly worse than that of their typically developed peers (95 % CI -7.6 to -3.6). Self-reported siblings' QoL was significantly lower as siblings' age (95 % CI -2.52 to -0.59) and caregivers' burden (95 % CI -0.35 to -0.05) increased. Parent-reported siblings' QoL was significantly lower with increasing caregivers' burden (95 % CI -0.45 to -0.16) and higher as family QoL increased (95 % CI 0.09 to 0.37). CONCLUSIONS: The cross-sectional nature of these data precludes any statement of causality. Family QoL worsened with higher caregivers' burden levels. Lower caregivers' burden scores were associated with a higher family QoL. Siblings' QoL was impaired as compared to typically developed peers, worse among older siblings, and as caregivers' burden increased and better with higher family QoL levels. Future multicenter studies may validate the generalizability of the present findings.

Patient-reported outcomes after personalised dose-escalation for stage II-III non-small-cell lung cancer patients: Results from the randomised ARTFORCE PET-Boost trial.

BACKGROUND AND PURPOSE: The ultimate challenge in dose-escalation trials lies in finding the balance between benefit and toxicity. We examined patient-reported outcomes (PROs), including health-related quality of life (HRQoL) in patients with locally advanced non-small cell lung cancer (LA-NSCLC), treated with dose-escalated radiotherapy. MATERIALS AND METHODS: The international, randomised, phase 2 ARTFORCE PET-Boost study (NCT01024829) aimed to improve 1-year freedom from local failure rates in patients with stage II-III NSCLC, with a ≥ 4 cm primary tumour. Treatment consisted of an individualised, escalated fraction dose, either to the primary tumour as a whole or to its most FDG-avid subvolume (24 x 3.0-5.4 Gy). Patients received sequential or concurrent chemoradiotherapy, or radiotherapy only. Patients were asked to complete the EORTC QLQ-C30, QLQ-LC13, and the EuroQol-5D at eight timepoints. We assessed the effect of dose-escalation on C30 sum score through mixed-modelling and evaluated clinically meaningful changes for all outcomes. RESULTS: Between Apr-2010 and Sep-2017, 107 patients were randomised; 102 were included in the current analysis. Compliance rates: baseline 86.3%, 3-months 85.3%, 12-months 80.3%; lowest during radiation treatment 35.0%. A linear mixed-effect (LME) model revealed no significant change in overall HRQoL over time, and no significant difference between the two treatment groups. Physical functioning showed a gradual decline in both groups during treatment and at 18-months follow-up, while clinically meaningful worsening of dyspnoea was seen mainly at 3- and 6-months. CONCLUSION: In patients with LA-NSCLC treated with two dose-escalation strategies, the average patient-reported HRQoL remained stable in both groups, despite frequent patient-reported symptoms, including dyspnoea, dysphagia, and fatigue.

Air pollution mixture associated with oxidative stress exacerbation and symptoms deterioration in allergic rhinitis patients: Evidence from a panel study.

With allergic rhinitis (AR) on the rise globally, there has been a growing focus on the role of environmental pollutants in the onset of AR. However, the potential mechanisms by how and which these pollutants exacerbate AR conditions remain unknown. This panel study of 49 patients diagnosed with AR over one year aimed to assess the individual and combined effects of short-term exposure to multiple ambient pollutants on oxidative stress, symptoms, and quality of life among patients with AR. All participants underwent four repeated assessments of health conditions and personal environmental exposures (PM2.5, O3, SO2, and NO2) over warm and cold seasons during 2017-2018. We evaluated two oxidative stress biomarkers (malondialdehyde [MDA], and superoxide dismutase [SOD]) via nasal lavage. We collected information on self-reported symptoms and quality of life using the Rhinitis Symptom Scale (SRS), the Visual Analog Scale (VAS), and the Rhinoconjunctivitis Quality of Life Questionnaire (RQLQ) through in-person interviews. Bayesian kernel machine regression (BKMR) was used to evaluate the joint effects of pollutant mixture and identify key contributors. The results revealed a significant association of the pollutant mixture when all four pollutants were at or above their median levels, with increased oxidative stress. This was evidenced by elevated MDA and reduced SOD. We found a joint detrimental effect of the pollutant mixture on AR symptoms with a strong association with increased SRS scores, but a non-significant positive association with VAS and RQLQ scores. PM2.5, O3, and SO2 presented as the potentially primary contributors to the adverse health effects associated with the pollutant mixture in Taiyuan city. Patients with AR exposed to short-term air pollutant mixture are more likely to have greater nasal symptoms and worse quality of life from increased oxidative stress and reduced antioxidant capacity. Further research is warranted to better elucidate the underlying mechanisms.