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1.
Siglo cero (Madr.) ; 54(4): 49-64, oct.-dic. 2024. tab, graf
Artigo em Espanhol | IBECS | ID: ibc-229228

RESUMO

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)


Assuntos
Humanos , Adulto Jovem , Adulto , Deficiência Intelectual , Qualidade de Vida , Pessoas com Deficiência , Chile , Amostragem
2.
Siglo cero (Madr.) ; 54(4): 49-64, oct.-dic. 2024. tab, graf
Artigo em Espanhol | IBECS | ID: ibc-EMG-558

RESUMO

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)


Assuntos
Humanos , Adulto Jovem , Adulto , Deficiência Intelectual , Qualidade de Vida , Pessoas com Deficiência , Chile , Amostragem
3.
Artigo em Espanhol | LILACS-Express | LILACS | ID: biblio-1535339

RESUMO

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.

4.
Rehabilitación (Madr., Ed. impr.) ; 58(2): 1-9, abril-junio 2024. graf, tab
Artigo em Espanhol | IBECS | ID: ibc-232116

RESUMO

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)


Assuntos
Humanos , Diafragma da Pelve , Neoplasias da Próstata , Incontinência Urinária , Qualidade de Vida , Saúde
5.
Enferm. actual Costa Rica (Online) ; (46): 58744, Jan.-Jun. 2024. tab
Artigo em Português | LILACS, BDENF - Enfermagem, SaludCR | ID: biblio-1550248

RESUMO

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.


Assuntos
Humanos , Masculino , Adulto , Pessoa de Meia-Idade , Polícia , Saúde Militar , Qualidade do Sono , Qualidade de Vida , Brasil , Saúde Ocupacional
6.
Proc Inst Mech Eng H ; : 9544119241246848, 2024 Apr 16.
Artigo em Inglês | MEDLINE | ID: mdl-38627995

RESUMO

The CONfidence app was developed to address an unmet need for access to self-help advice and information for bladder and bowel incontinence. The app was developed by the Bladder and Bowel CONfidence Health Integration Team and Expert Self Care and this paper describes the evolution of this innovation to empower patients and the public with bladder and bowel leakage. The app is intended to provide a proactive approach to continence promotion and not replace formal healthcare. Crucial steps were identified to ensuring this resource was accessible and understandable for the intended audience including: input from national clinical experts and individuals with lived experience to co-produce content, clear definition of scope, technical expertise in app development, clear language avoiding jargon or medical terms, credibility assurance and a strategic plan for dissemination. The app is free to download and will remain so to ensure evidence-based continence advice can be in the palm of all with a smartphone. The CONfidence app has been downloaded approaching 7000 times and is in use in 10 countries. A continual effort is required to share this resource as disclosure of these symptoms is shrouded in secrecy and many people could benefit from its content.

7.
Free Radic Res ; : 1-12, 2024 Apr 16.
Artigo em Inglês | MEDLINE | ID: mdl-38628043

RESUMO

This study aimed to examine the effects of low-level laser therapy (LLLT) combined with levothyroxine replacement therapy on thyroid function, oxidative stress (OS), and quality of life in patients with Hashimoto's thyroiditis (HT). Forty-six patients diagnosed with HT were randomized to receive active LLLT (n = 23) and sham LLLT (n = 23) twice a week for three weeks. Clinical and laboratory evaluations of the participants were performed before treatment and three months after treatment. Biochemical parameters were taken from the patient file requested by the physician as a routine examination. Malondialdehyde and nitricoxide indicating oxidant stress and superoxide dismutase, catalase, and glutathione, which indicate antioxidant capacity, were used in OS evaluation. The Oxidative Stress Index was calculated by measuring the Total Antioxidant Status and the Total Oxidant Status. At the end of our study, a significant improvement in oxidant and antioxidant biomarker levels showing OS and quality of life was observed in the treatment groups (p < 0.05). There was no change in thyroid function and autoimmunity at the end of the treatment between the two groups (p > 0.05). Improvements in glutathione levels and quality of life were significantly higher in the active treatment group than in the sham-controlled group. LLLT was found to be more effective on OS and quality of life in patients with HT than in patients in the sham-controlled group. It was concluded that LLLT is a safe and effective method that can be used in the treatment of patients with HT.

8.
Adv Clin Exp Med ; 2024 Apr 17.
Artigo em Inglês | MEDLINE | ID: mdl-38628108

RESUMO

BACKGROUND: The Hand Function Scoring (HFS) system was created to assess the results of rehabilitation treatment after hand injuries. A perceived hand function improvement in patients who underwent carpal tunnel syndrome surgery prompted us to use the Watts HFS questionnaire in our study. OBJECTIVES: The study aimed to: 1) translate and validate the new questionnaire into Polish; 2) analyze the usefulness of the scale in the preand post-operative assessment of patients with carpal tunnel syndrome; and 3) compare the results with other questionnaires recognized as the gold standard in carpal tunnel treatment evaluation. MATERIAL AND METHODS: Patients with electromyographically confirmed carpal tunnel syndrome (n = 317) were enrolled in the study. Participants completed the HFS, Boston Carpal Tunnel Questionnaire (BCTQ), Michigan Hand Outcomes Questionnaire (MHQ), and the Quality-of-Life Scale (QoLS) on their first visit to our clinic. Two weeks later, 84 patients completed the same questionnaires again, and 6-12 months after the operation, we received 90 additional responses. RESULTS: The analysis showed that the HFS questionnaire met the validation criteria and had a strong correlation with the BCTQ questionnaire for the Symptoms Severity Scale (SSS) (Rho = 0.70, p < 0.001) and the Functional Status Scale (FSS) (Rho = 0.89, p < 0.001). CONCLUSIONS: The HFS questionnaire was successfully employed in the subjective assessment of carpal tunnel symptom syndrome severity and the analysis of treatment results, and would complement the clinical assessment of patients during treatment. The questionnaire could also be used in future scientific research.

9.
J Child Neurol ; : 8830738241246693, 2024 Apr 17.
Artigo em Inglês | MEDLINE | ID: mdl-38629166

RESUMO

Delirium often goes unrecognized in neonates and children because of lack of experience in evaluating behavior and cognition, insufficient awareness of the prevalence, and nondistinctive symptoms in this population. Although there are increasing reports of the presence of delirium in neonates, there are little data to guide the pharmacologic treatment in this population. In this retrospective single-center case series, we present our experience using quetiapine to treat delirium in 9 medically complex neonates. Based on an extensive literature review, expert opinion, and institutional experience, we propose an approach for monitoring and treating delirium in neonates and infants.

10.
Ther Apher Dial ; 2024 Apr 17.
Artigo em Inglês | MEDLINE | ID: mdl-38629237

RESUMO

INTRODUCTION: This study examined the impact of Coronavirus disease 2019  on anxiety, depression, and health-related quality of life (HRQOL) among Egyptian hemodialysis (HD) patients. METHODS: This multicenter cross-sectional study was carried out in Egypt in the years 2021-2022, where 300 HD patients from four HD centers were allocated into two groups: post-COVID and non-COVID. The Hospital Anxiety and Depression Scale (HADS) and the Kidney Disease QOL-36 questionnaire were used to assess anxiety, depression, and QOL of the included patients. RESULTS: In the post-COVID group, abnormal and borderline cases of anxiety and depression were detected in 38.6% and 62.5% of patients, respectively, with no statistically significant difference between both groups. The post-COVID group showed higher work status and lower sexual and physical functioning, which correlated negatively with anxiety and depression scores. CONCLUSION: Past-COVID infection did not influence depression and anxiety symptoms in HD patients. Sexual and physical functioning were more affected among COVID-survivors.

11.
Ophthalmic Genet ; : 1-8, 2024 Apr 17.
Artigo em Inglês | MEDLINE | ID: mdl-38629455

RESUMO

BACKGROUND: Homocystinuria (HCU) is a rare metabolic disease that affects many organs, including the eyes. Aims: to assess visual functions, ocular characteristics, visual quality of life and time from the onset of ocular manifestations to HCU-diagnosis in patients with HCU. MATERIAL AND METHODS: Eighteen patients underwent ophthalmological examinations and visual quality of life questionnaires. RESULTS: Best corrected decimal visual acuity was median 1.0 (range amaurosis - 1.3) right eye and 1.0 (range amaurosis -1.3) left eye. Five patients presented with severe myopia as first HCU manifestation, duration to HCU diagnosis was mean 13.6 years (range 2-25). Two patients had suffered ectopia lentis as first HCU manifestation, HCU diagnosis was established mean 8.0 years (range 7-9) later. One patient had suffered both from thrombosis and ectopia lentis prior to diagnosis. Another four patients suffered thromboembolic events before diagnosis. Median VFQ-25 composite score was 93 (68-98). CONCLUSIONS: The prevalence of myopia, ectopia lentis and monocular blindness was high in HCU-patients, which was reflected in their visual quality of life. Diagnosis was often delayed after the first ocular manifestation, increasing the risk of other severe non-ocular complications.

12.
Autism ; : 13623613241245578, 2024 Apr 17.
Artigo em Inglês | MEDLINE | ID: mdl-38629698

RESUMO

LAY ABSTRACT: In this study we have asked a group of autistic young adults to describe what is important for their quality of life. The 14 participants (aged 21-29 years) were recruited from a 10-year follow-up study of autistic people. During interviews, our participants described the importance of having relationships with family, friends and pets. Having meaningful activities and being able to immerse themselves in particular interests was also reported to be important for a good quality of life. Interests had also guided their choice of what to study and what to do for work. They also spoke of how communication problems with professionals, bullying and sensory and emotional overload could have a negative impact on quality of life. Future interventions should focus on how professionals can help autistic people to connect to people/animals and meaningful activities, as the participants described this as important for having a good quality of life. These findings may be helpful in enhancing how passions and interests can be seen as opportunities for both academic and work careers for autistic people. Future research and interventions should also look at the communication barriers between autistic people and professionals, and how two-way understanding can be improved.

13.
Heart Fail Rev ; 2024 Apr 17.
Artigo em Inglês | MEDLINE | ID: mdl-38630207

RESUMO

Heart failure (HF) is a prevalent global disease, particularly impacting developed countries. With the world's aging population, HF's impact on the quantity and quality of life is expected to grow. This review aims to ascertain the frequency, characteristics, and properties of all patient-reported outcomes measures (PROMs) studied in HF patients. We searched Ovid/Medline and Web of Science for original articles about PROMs performed in adults with HF. Using pre-established quality criteria for measurement properties, an overall rating was assigned to evaluate and compare different instruments. The quality of evidence was assessed with the COSMIN risk of bias checklist. Of 4283 records identified, we reviewed 296 full-text documents and included 64 papers, involving 30,185 participants. Thirty different PROMs were identified, with 14 specifically designed for HF being the most commonly used. Minnesota Living with Heart Failure (MLHF) and Kansas City Cardiomyopathy Questionnaire (KCCQ) were evaluated 16 and 13 times, respectively, demonstrating good psychometric properties. The MacNew Heart Disease Health-Related Quality of Life Questionnaire, a common heart disease-specific instrument, exhibited negative performances across various psychometric measures. Evidence for generic instruments was scant and unremarkable and they proved to be less responsive in HF populations. MLHF and KCCQ emerged as the most commonly used and well-supported PROMs, with robust overall evidence. They are comprehensive and accurate instruments, particularly suitable for application in clinical practice and research. Future research should explore how computer-adapted instruments can enhance precision, reduce respondent burden, and improve communication between clinicians and patients, thereby promoting more efficient and patient-centered services.

14.
Artigo em Inglês | MEDLINE | ID: mdl-38630246

RESUMO

OBJECTIVES: Prevalence of diabetes distress and mental health comorbidities among adolescents with type 1 diabetes (T1D) is high. Despite recommendations for routine psychosocial risk assessment, there is little guidance for their implementation. This study aims to describe the implementation and baseline outcomes of the Mind Youth Questionnaire (MY-Q), a validated psychosocial screening tool for health-related quality of life (QoL) including mood, among adolescents living with T1D. METHODS: Adolescents aged 13-18 years completed the MY-Q from October 1, 2019-April 1, 2023. Baseline characteristics, MY-Q results including categories flagged positive (noting possible areas of concern), debrief duration, and frequency of social work or mental health referral were collected and analyzed using descriptive statistics. RESULTS: A total of 343 adolescents (mean age 15.3 years; 52 % female) completed a baseline MY-Q. Median overall MY-Q debrief time (IQR) was 10.0 min (6.0, 20.0). About 290 (84.5 %) adolescents had at least one of seven categories flagged, most commonly "Family" (61 %). About 30 % of adolescents had "Mood" flagged, and 2.9 % of adolescents were referred to mental health following debrief. CONCLUSIONS: Without the need for additional resources, implementation of the MY-Q in a pediatric tertiary care diabetes clinic successfully identified QoL issues and mental health concerns among adolescents with T1D.

15.
Support Care Cancer ; 32(4): 265, 2024 Apr 02.
Artigo em Inglês | MEDLINE | ID: mdl-38565669

RESUMO

PURPOSE: Oral adjuvant endocrine therapy (AET) is an effective treatment for hormone receptor positive breast cancer to decrease recurrence and mortality, but adherence is poor. This study explored post-menopausal women's experiences with AET, with a particular focus on adherence to AET as well as distress and symptoms experienced prior to and during AET treatment. METHODS: Participants were recruited from a hospital registry, stratified by adherence to/discontinuation of AET. Telephone interviews followed a semi-structured interview guide and were recorded and transcribed verbatim. Transcripts were systematically coded using team-based coding, with analysis of themes using a grounded theory approach. RESULTS: Thirty-three participants were interviewed; ages ranged from 57 to 86 years. Participants included 10 discontinued patients and 23 patients who completed their AET course or were adherent to AET at the time of interviewing. Both adherent and discontinued patients reported symptoms throughout their AET treatment course, and both attributed symptoms to factors other than AET (e.g., older age and pre-existing comorbidities). However, discontinued patients were more likely to attribute symptoms to AET and to describe difficulty managing their symptoms, with some directly citing symptoms as the reason for discontinuing AET therapy. Conversely, adherent patients were more likely to describe the necessity of taking AET, despite symptoms. CONCLUSIONS: AET adherence was associated with beliefs about AET, symptom attribution, and symptom management. Routine symptom monitoring during AET and addressing both symptoms and patients' understanding of their symptoms may promote adherence to AET.


Assuntos
Neoplasias da Mama , Humanos , Feminino , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Neoplasias da Mama/tratamento farmacológico , Quimioterapia Adjuvante , Pós-Menopausa , Adesão à Medicação , Antineoplásicos Hormonais/uso terapêutico
16.
Tech Coloproctol ; 28(1): 45, 2024 Apr 03.
Artigo em Inglês | MEDLINE | ID: mdl-38568325

RESUMO

BACKGROUND: Faecal incontinence (FI) is common, with a significant impact on quality of life. Percutaneous tibial nerve stimulation (PTNS) is a therapy for FI; however, its role has recently been questioned. Here we report the short-term clinical and manometric outcomes in a large tertiary centre. METHODS: A retrospective review of a prospective PTNS database was performed, extracting patient-reported FI outcome measures including bowel diary, the St Marks's Incontinence Score (SMIS) and Manchester Health Questionnaire (MHQ). Successful treatment was > 50% improvement in symptoms, whilst a partial response was 25-50% improvement. High-resolution anorectal manometry (HRAM) results before and after PTNS were recorded. RESULTS: Data were available from 135 patients [119 (88%) females; median age: 60 years (range: 27-82years)]. Overall, patients reported a reduction in urge FI (2.5-1) and passive FI episodes (2-1.5; p < 0.05) alongside a reduction in SMIS (16.5-14) and MHQ (517.5-460.0; p < 0.001). Some 76 (56%) patients reported success, whilst a further 20 (15%) reported a partial response. There were statistically significant reductions in rectal balloon thresholds and an increase in incremental squeeze pressure; however, these changes were independent of treatment success. CONCLUSION: Patients report PTNS improves FI symptoms in the short term. Despite this improvement, changes in HRAM parameters were independent of this success. HRAM may be unable to measure the clinical effect of PTNS, or there remains the possibility of a placebo effect. Further work is required to define the role of PTNS in the treatment of FI.


Assuntos
Incontinência Fecal , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Incontinência Fecal/terapia , Manometria , Estudos Prospectivos , Qualidade de Vida , Nervo Tibial , Adulto , Idoso , Idoso de 80 Anos ou mais
17.
Int J Gynaecol Obstet ; 165(2): 431-441, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38576220

RESUMO

OBJECTIVE: To investigate the effects of 52 weeks of treatment with relugolix combination therapy (relugolix 40 mg, estradiol 1 mg, norethindrone acetate 0.5 mg) on symptoms of uterine fibroids (UF) and quality of life (QoL) in women with heavy menstrual bleeding associated with UF and anemia (hemoglobin ≤10.5 g/dL) at baseline. METHODS: This post hoc analysis included women from the LIBERTY long-term extension study with anemia (hemoglobin concentration ≤10.5 g/dL) at pivotal study baseline and documented hemoglobin values at week 52 (anemia-evaluable population). Treatment responders: women achieving a menstrual blood loss volume of <80 mL and a ≥50% reduction over the last 35 days of treatment. Anemia responders were women achieving a hemoglobin increase of >2 g/dL from baseline to week 52. Least squares (LS) mean changes from baseline in uterine fibroid symptom (UFS)-QoL symptom severity, fatigue, and health-related QoL total (HR-QoL) and (sub)scale scores were calculated. RESULTS: In total, 115 women were included in the anemia-evaluable population. Of 39 anemia-evaluable women who received continuous treatment with relugolix combination therapy for 52 weeks, 34 (87.2%) met treatment responder criteria and 23 (59.0%) were anemia responders. LS mean hemoglobin concentration increased by 29.4% at week 52. LS mean UFS-QoL symptom severity and fatigue scores decreased by 38.5 and 31.9 points, respectively, and HR-QoL total score increased by 41.6 points. CONCLUSION: In women with UF and a high disease burden due to anemia, relugolix combination therapy substantially improved hemoglobin levels, decreased distress due to symptoms, especially fatigue, over 52 weeks.


Assuntos
Anemia , Leiomioma , Compostos de Fenilureia , Pirimidinonas , Neoplasias Uterinas , Feminino , Humanos , Masculino , Qualidade de Vida , Neoplasias Uterinas/complicações , Leiomioma/complicações , Leiomioma/tratamento farmacológico , Anemia/tratamento farmacológico , Anemia/etiologia , Hemoglobinas
18.
Support Care Cancer ; 32(4): 270, 2024 Apr 05.
Artigo em Inglês | MEDLINE | ID: mdl-38578444

RESUMO

PURPOSE: The COVID-19 pandemic shifted the healthcare field from in-person clinic visits to virtual-based telehealth appointments. This study explored young adult (YA) hematopoietic stem cell transplantation (HSCT) patient and physician communication preferences and quality of life. METHODS: One researcher conducted semi-structured interviews with n = 10 YA HSCT patients and n = 10 healthcare providers (HPs). HPs included physicians (n = 5) and advanced practice provider (APP) (nurse practitioners and physician assistants) (n = 5). Interviews lasted approximately 10-15 min, were held over Zoom®, and were audio-recorded. Interviews were professionally transcribed verbatim, and two independent researchers conducted a thematic analysis using Dedoose®. RESULTS: Common themes included the following: (1) convenience, (2) improved communication, (3) technology issues, and (4) quality of life for patients and physicians. In general, most patients (n = 7; 70%) preferred in-person visits over telehealth for initial appointments, stating they chose the "social connection" and "engagement" associated with in-person visits. For "check-ins" and follow-up appointments (n = 5; 50%), patients preferred hybrid appointments. Physicians (n = 4; 80%) preferred telehealth stating it was "convenient," "timesaving," and improved "compliance." In contrast, all APP staff (n = 5; 100%) preferred in-person visits, stating in-person improved "relationships" with patients and was more "convenient" than using electronic devices for telehealth. CONCLUSION: Providers differed in preference. APP personnel preferred in-person visits and HSCT physicians preferred telehealth appointments. YA HSCT patients preferred in-person for initial appointments and hybrid clinic visits for follow-up appointments.


Assuntos
Transplante de Células-Tronco Hematopoéticas , Telemedicina , Humanos , Adulto Jovem , Qualidade de Vida , Pandemias , Pessoal de Saúde
19.
Transplant Cell Ther ; 2024 Apr 03.
Artigo em Inglês | MEDLINE | ID: mdl-38580095

RESUMO

Disrupted sleep is commonly reported during hematopoietic stem cell transplant. In this study, we use actigraphy to measure sleep parameters, and qualitative measures of quality of life, depression, and sleep in pediatric and young adult transplant recipients to describe their time course through transplant. Eight patients had evaluable actigraphy data, and 10 patients completed the surveys. The median age of the 6 male and 7 female participants was 13.94 years old. Sleep duration and efficiency measured by actigraphy were suboptimal prior to transplant, then declined to a nadir between Day +7 to +14. Self-reported sleep quality, depression, and quality of life were worst at Day +14 to +30 but improved by Day +100. Findings support efforts to improve sleep, which may improve recovery, mental health and quality of life.

20.
Health Qual Life Outcomes ; 22(1): 32, 2024 Apr 14.
Artigo em Inglês | MEDLINE | ID: mdl-38616282

RESUMO

BACKGROUND: Long-term information on health-related quality of life (HRQOL) and mental health of non-hospitalized individuals with "post COVID-19 syndrome" (PCS) is scarce. Thus, the objectives of the present study were to compare HRQOL and mental health of individuals with and without PCS in a German sample of non-hospitalized persons after SARS-CoV-2 infection, to characterize the long-term course up to 2 years and to identify predictors for post COVID-19 impairments. METHODS: Individuals with past SARS-CoV-2 infection were examined at the University Hospital of Augsburg from November 2020 to May 2021 and completed a postal questionnaire between June and November 2022. Participants who self-reported the presence of fatigue, dyspnea on exertion, memory problems or concentration problems were classified as having PCS. HRQOL was assessed using the Veterans RAND 12-Item Health Survey, mental health was measured by the Patient Health Questionnaire and the Fatigue Asessment Scale was used to assess fatigue severity. Multivariable linear regression models with inverse probability weighting were used to determine the association between PCS and health outcomes. RESULTS: From the 304 participants (58.2% women, median age 52 years), 210 (69.1%) were classified as having PCS in median 26 months after SARS-CoV-2 infection. Persons with PCS showed significantly more often depressive and anxiety disorders. PCS was independently and significantly associated with higher levels of depression, post-traumatic stress and fatigue, as well as poorer physical and mental HRQOL in median 9 months as well as 26 months after SARS-CoV-2 infection. A large number of acute symptoms and a prior diagnosis of depression were independently associated with poor mental health and HRQOL. While post-traumatic stress and mental HRQOL improved from 9 months to 26 months post infection onset, depressiveness, fatigue and physical HRQOL remained stable in both, persons with and without PCS. CONCLUSIONS: PCS in non-hospitalized persons after SARS-CoV-2 infection is often associated with long-term impairments of mental health and HRQOL outcomes.


Assuntos
COVID-19 , Saúde Mental , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Síndrome Pós-COVID-19 Aguda , Qualidade de Vida , COVID-19/epidemiologia , SARS-CoV-2 , Fadiga/epidemiologia , Fadiga/etiologia
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