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1.
JMIR Hum Factors ; 11: e59659, 2024 Sep 03.
Artículo en Inglés | MEDLINE | ID: mdl-39226099

RESUMEN

BACKGROUND: Health-related quality of life (HRQoL) reflects an individual's perception of their physical and mental health over time. Despite numerous studies linking physical activity to improved HRQoL, most rely on self-reported data, limiting the accuracy and generalizability of findings. This study leverages objective accelerometer data to explore the association between physical activity and HRQoL in Korean adults. OBJECTIVE: The objective of this study is to analyze the relationship between objectively measured physical activity using accelerometers and HRQoL among Korean adults, aiming to inform targeted interventions for enhancing HRQoL through physical activity. METHODS: This observational study included 1298 participants aged 19-64 years from the Korea National Health and Nutrition Examination Survey (KNHANES) VI, who wore an accelerometer for 7 consecutive days. HRQoL was assessed using the EQ-5D questionnaire, and physical activity was quantified as moderate-to-vigorous physical activity accelerometer-total (MVPA-AT) and accelerometer-bout (MVPA-AB). Data were analyzed using logistic regression to determine the odds ratio (ORs) for low HRQoL, adjusting for socioeconomic variables and mental health factors. RESULTS: Participants with higher HRQoL were younger, more likely to be male, single, highly educated, employed in white-collar jobs, and had higher household incomes. They also reported less stress and better subjective health status. The high HRQoL group had significantly more participants meeting MVPA-AB ≥600 metabolic equivalents (P<.01). Logistic regression showed that participants meeting MVPA-AB ≥600 metabolic equivalents had higher odds of high HRQoL (OR 1.55, 95% CI 1.11-2.17). Adjusted models showed consistent results, although the association weakened when adjusting for mental health factors (OR 1.45, 95% CI 1.01-2.09). CONCLUSIONS: The study demonstrates a significant association between HRQoL and moderate to vigorous physical activity sustained for at least 10 minutes, as measured by accelerometer. These findings support promoting physical activity, particularly sustained moderate to vigorous activity, to enhance HRQoL. Further interventional studies focusing on specific physical activity domains such as occupational, leisure-time, and commuting activities are warranted.


Asunto(s)
Acelerometría , Ejercicio Físico , Encuestas Nutricionales , Calidad de Vida , Humanos , Masculino , República de Corea/epidemiología , Adulto , Calidad de Vida/psicología , Ejercicio Físico/psicología , Femenino , Persona de Mediana Edad , Adulto Joven , Encuestas y Cuestionarios
2.
Chin Clin Oncol ; 13(Suppl 1): AB035, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-39295353

RESUMEN

BACKGROUND: Existing international data has shown that glioma patients suffer from poorer health-related quality of life (HRQoL). The European Organization for Research and Treatment of Cancer (EORTC) brain cancer-specific Quality of Life Questionnaire (QLQ-BN20) was developed to be together with EORTC Core Quality of Life Questionnaire (QLQ-C30) for cancer patients, highlighting issues particularly relevant to brain tumor patients. It has since been translated and validated across numerous cohorts. However, its psychometric properties have yet to be examined in Singapore. This study aimed to validate the use of QLQ-BN20 in a nationally representative sample of glioma patients in Singapore. METHODS: Eighty-seven patients who had undergone neurosurgery for glioma from six hospitals in Singapore completed three self-reported measures of HRQoL (the EuroQol EQ-5D-5L, EORTC QLQ-C30, and EORTC QLQ-BN20). Descriptive statistics summarized their characteristics and scores on the questionnaires. Psychometric properties of QLQ-BN20 examined included convergent and discriminant validity, internal consistency (Cronbach's alpha), and construct validity (Spearman's correlation). Clinical validity of QLQ-BN20 was determined based on whether QLQ-BN20 scores could differentiate patients with good and poor functional status as measured by Karnofsky Performance Scale and Barthel's Index. RESULTS: The QLQ-BN20 was demonstrated to have good convergent validity (item-own scale correlation >0.70) and discriminant validity (item-own scale correlation higher than item-other scale correlation). There is high internal consistency, both overall (α=0.88) and within multi-item subscales (α=0.74-0.88). Conceptually similar subscales between different tools were more strongly correlated. For instance, the QLQ-C30 physical functioning subscale and the QLQ-BN20 motor dysfunction subscale (r=-0.65, P<0.001), and the QLQ-C30 cognitive functioning subscale and the QLQ-BN20 cognitive deficits subscale (r=-0.51, P<0.001). QLQ-BN20 was also able to distinguish between functional statuses of patients (P<0.05). CONCLUSIONS: This study supports the validity and reliability of the EORTC QLQ-BN20 among patients with glioma in Singapore. There is good convergent and discriminant validity, internal consistency, construct validity, and clinical validity. The QLQ-BN20 is a valuable supplement to the QLQ-C30. Hence, we recommend expanding its use for all glioma patients and possibly brain cancer patients in Singapore.


Asunto(s)
Neoplasias Encefálicas , Glioma , Calidad de Vida , Humanos , Calidad de Vida/psicología , Glioma/psicología , Masculino , Singapur , Femenino , Persona de Mediana Edad , Encuestas y Cuestionarios , Neoplasias Encefálicas/psicología , Psicometría/métodos , Adulto , Anciano
3.
Behav Sci (Basel) ; 14(8)2024 Aug 22.
Artículo en Inglés | MEDLINE | ID: mdl-39199125

RESUMEN

Recent studies suggest that traditional bullying, cyberbullying, and homophobic bullying lead to a low health-related quality of life (HRQoL) in adolescents. The present study aims to analyze this, paying particular attention to homophobic bullying, based on the sexual orientation of 815 adolescents who were asked to fill in a self-report questionnaire. In heterosexuals, both homophobic victimization and victimization were inversely related to different dimensions of HRQoL (moods and emotions, and school environment, respectively). In adolescents who were uncertain about their sexual orientation, there were inverse relationships between homophobic victimization and mood and social acceptance, and there was also a positive relationship between homophobic aggression and physical well-being. In homosexuals and bisexuals, homophobic victimization was inversely related to social acceptance, economic resources, and autonomy, while homophobic aggression was not related to HRQoL. The results obtained offer new insights, thanks to the use of a specific and validated instrument to record homophobic bullying that covers both homophobic victimization and homophobic aggression. In addition, the need to intervene in a holistic manner, involving political and social agents, as well as all actors implicated in the school environment, is discussed with a view to protecting adolescent health and promoting inclusive education.

4.
Healthcare (Basel) ; 12(16)2024 Aug 09.
Artículo en Inglés | MEDLINE | ID: mdl-39201150

RESUMEN

Influenza and influenza-like illness (ILI) pose significant clinical and economic burdens globally each year. This systematic literature review examined quantitative studies evaluating the impact of patients' influenza/ILI on their caregivers' well-being, focusing on health-related quality of life (HRQoL), work productivity, and activity impairment. A comprehensive search across six databases, including the Cochrane Database of Systematic Reviews, Embase, MEDLINE via PubMed, Ovid, PsycNet, and Web of Science, yielded 18,689 records, of which 13,156 abstracts were screened, and 662 full-text articles were reviewed from January 2007 to April 2024. Thirty-six studies [HRQoL: 2; productivity: 33; both: 1] covering 22 countries were included. Caregivers of 47,758 influenza or ILI patients across 123 study cohorts were assessed in the review. The mean workday loss among caregivers ranged from 0.5 to 10.7 days per episode, influenced by patients' influenza status (positive or negative), disease severity (mild or moderate-to-severe), age, viral type (influenza A or B), and vaccination/treatment usage. The HRQoL of caregivers, including their physical and emotional well-being, was affected by a patient's influenza or ILI, where the severity and duration of a patient's illness were associated with worse HRQoL. This review shows that the consequences of influenza or ILI significantly affect not only patients but also their caregivers.

5.
Artículo en Inglés | MEDLINE | ID: mdl-39091656

RESUMEN

Background: Hypervigilance has emerged as an important construct in esophageal symptom reporting, but a review of the literature does not currently exist. This scoping review aimed to generate a comprehensive overview of the literature on hypervigilance in esophageal diseases and summarize the evidence for each esophageal disease. Methods: Guided by the Joanna Briggs Institute scoping review methodology, articles that were peer-reviewed original studies, published in English, and included adult patients with at least one esophageal disease were included. Articles were retrieved from PubMed and Embase databases and screened first by title and abstract for an initial round of exclusions, and then again by full text for a second round of exclusions. Results: Nineteen studies were included. Studies were categorized by primary diagnosis: achalasia (1, 5%), eosinophilic esophagitis (1, 5%), gastroesophageal reflux disease (GERD) (6, 32%), laryngopharyngeal reflux (3, 16%), non-cardiac chest pain (3, 16%), and multi-disorder samples (5, 26%). Studies primarily evaluated associations between hypervigilance and symptom severity, psychosocial functioning, health-related quality of life, and physiological disease variables. A number of studies also evaluated hypervigilance across esophageal diseases or presentations (e.g., across motility disorders, across GERD phenotypes). Conclusions: The role of hypervigilance in symptom reporting has been investigated in multiple esophageal conditions. Findings suggest potential clinical utility in assessing hypervigilance, such as for disease conceptualization and treatment planning. Future research is needed in larger samples, with consistent measures of hypervigilance, and using data synthesis methodology (i.e., systematic reviews) to better compare and contrast findings across studies.

6.
Front Med (Lausanne) ; 11: 1420848, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-39139792

RESUMEN

Background: Myopia, strabismus, and ptosis are common pediatric eye diseases, which have a negative impact on children and adolescents in terms of visual function, mental health, and health-related quality of life (HRQoL). Therefore, this study focused on those pediatric eye diseases by analyzing their risk factors and HRQoL for the comprehensive management of myopia, strabismus, and ptosis. Methods: A total of 363 participants (2-18 years old) were included in this study for risk factors analysis of myopia, strabismus, and ptosis. We collected demographic characteristics, lifestyle habits and eye care habits of these children and analyzed them by using univariable and multivariable logistic regression. In addition, we applied the Chinese version of Pediatric Quality of Life Inventory-Version 4.0 (PedsQL 4.0) to assess HRQoL in 256 children with strabismus and ptosis. Univariable and multivariable linear regression models were applied to evaluate potential influencing factors of HRQoL. Results: Of all the participants, 140 had myopia, 127 had strabismus, and 145 had ptosis. Based on the multivariable logistic regression analysis model, we found that the history of parental myopia and daily average near-distance eye usage time were risk factors for myopia, and increased body mass index (BMI) was identified as a risk factor for strabismus and ptosis. Individuals with ptosis possessed decreased HRQoL. The multivariable linear regression model suggested that daily average near-distance eye usage time, light intensity during visual tasks, and daily average sleep duration had potential influences on HRQoL. Conclusion: This is the first study to assess the risk factors and HRQoL of myopia, strabismus, and ptosis together. We identified risk factors for these common pediatric eye diseases to help doctors, parents, and teachers better manage them. Our study discovered that children with eye disorders exhibit a notably diminished HRQoL. Consequently, it emphasizes the necessity for increased social attention and mental health assistance for these children.

7.
Health Qual Life Outcomes ; 22(1): 69, 2024 Aug 30.
Artículo en Inglés | MEDLINE | ID: mdl-39215326

RESUMEN

BACKGROUND: Patient reported outcome measures (PROMs) can be used to assess the impact of health conditions upon an individual's health-related quality of life (HRQoL). Whilst PROMs have been used to quantify the HRQoL impact of amyotrophic lateral sclerosis (ALS), existing instruments may not fully capture what matters to people living with ALS (plwALS) or be appropriate to be used directly to inform the cost-effectiveness of new treatments. This highlights a need for a new condition-specific PROM that can both capture what's important to plwALS and be used in economic evaluation. This study has two key aims: 1) to produce a novel PROM for measuring HRQoL in plwALS (PROQuALS). 2) to value a set of items from the novel PROM to generate an associated preference-weighted measure (PWM) that will enable utility values to be generated. METHODS: A mixed-methods study design will be conducted across three stages. Stage 1 involves concept elicitation and the generation of draft PROM content from a robust and comprehensive systematic review of HRQoL in ALS, with input from plwALS. Stage 2 consists of cognitive debriefing of the draft PROM content to ascertain its content validity (Stage 2a), followed by a psychometric survey (Stage 2b) to assess statistical performance. Evidence from Stage 2 will be used to make decisions on the final content and format of the novel PROM. Stage 3 will involve valuation and econometric modeling using health economics methods to generate preference weights, so a PWM derived from the novel PROM can be used in the cost-effectiveness analyses of treatments. Patient and clinical advisory groups will have critical, collaborative input throughout the project. DISCUSSION: The novel PROM will be designed to comprehensively assess important aspects of HRQoL to plwALS and to quantify HRQoL in terms of subjective impact. The PROQuALS measure will be available for use in research and healthcare settings. The associated PWM component will extend and enable the use of PROQuALS in cost-effective analyses of new treatments for ALS. TRIAL REGISTRATION: Not applicable.


Asunto(s)
Esclerosis Amiotrófica Lateral , Medición de Resultados Informados por el Paciente , Calidad de Vida , Esclerosis Amiotrófica Lateral/psicología , Esclerosis Amiotrófica Lateral/terapia , Humanos , Calidad de Vida/psicología , Encuestas y Cuestionarios , Proyectos de Investigación , Psicometría , Análisis Costo-Beneficio
8.
Qual Life Res ; 2024 Aug 31.
Artículo en Inglés | MEDLINE | ID: mdl-39215856

RESUMEN

PURPOSE: The impact of pediatric traumatic brain injury (pTBI) on health-related quality of life (HRQoL) in children and adolescents remains understudied. Short scales have some advantages in terms of economy and administration over longer scales, especially in younger children. The aim of the present study is to psychometrically evaluate the six-item German version of the QOLIBRI-OS-KID/ADO scale for children and adolescents. In addition, reference values from a general German pediatric population are obtained to assist clinicians and researchers in the interpretation of HRQoL after pTBI. METHODS: A total of 297 individuals after TBI and 1997 from a general population sample completed the questionnaire. Reliability, validity, and comparability of the assessed construct were examined. RESULTS: The questionnaire showed satisfactory reliability (α = 0.75 and ω = 0.81 and α = 0.85 and ω = 0.86 for the TBI and general population samples, respectively). The QOLIBRI-OS-KID/ADO was highly correlated with its long version (R2 = 67%) and showed an overlap with disease-specific HRQoL (R2 = 55%) in the TBI sample. The one-dimensional factorial structure could be replicated and tested for measurement invariance between samples, indicating a comparable HRQoL construct assessment. Therefore, reference values and cut-offs indicating clinically relevant impairment could be provided using percentiles stratified by factors significantly associated with the total score in the regression analyses (i.e., age group and gender). CONCLUSION: In combination with the cut-offs, the QOLIBRI-OS-KID/ADO provides a cost-effective screening tool, complemented by interpretation guidelines, which may help to draw clinical conclusions and indications such as further administration of a longer version of the instrument to gain more detailed insight into impaired HRQoL domains or omission of further steps in the absence of an indication.

9.
J Affect Disord ; 363: 300-309, 2024 Oct 15.
Artículo en Inglés | MEDLINE | ID: mdl-39004313

RESUMEN

OBJECTIVE: To assess the long-term impact of the age of onset (AOO) of the first major depressive episode (MDE) according to 3 age groups and considering gender. METHODS: Data were extracted from NESARC III, a representative U.S. SAMPLE: We included 8053 participants with an MDE history in a cross-sectional and retrospective cohort study. We defined 3 AOO groups: childhood-onset (< 13 yo), adolescence-onset (13-18 yo), and adult-onset (> 18 yo). We compared sociodemographic characteristics, lifetime psychiatric disorders per DSM-5 criteria, and health-related quality of life (HRQOL) in each group and performed gender-stratified analyses. RESULTS: Prevalence of childhood-onset MDE was 10.03 %, adolescence-onset was 14.12 %, and adult-onset was 75.85 %. Suicide attempts (AOR = 3.61; 95 % CI 2.90-4.50), anxiety disorders (AOR = 1.92; 95 % CI 1.62-2.27), and personality disorders (AOR = 3.08; 95 % CI 2.56-3.71) were more frequent in the childhood-onset than in the adult-onset one. Adolescence-onset group showed similar results. Physical Disability scale (p < 0.001) and Mental Disability scale (p < 0.001) were significantly lower in the childhood-onset group. Results were more nuanced in the adolescence-onset group. Women in childhood-onset and adolescence-onset groups had poorer outcomes than the adult-onset group. Differences were less pronounced in men. LIMITATIONS: Recall and classification biases inherent to survey design. CONCLUSION: Individuals, particularly women, who experienced their first MDE during childhood or adolescence exhibit higher lifetime psychiatric disorder prevalence and poorer HRQOL than those with adult-onset MDE. These findings highlight the importance of preventive measures, early diagnosis, and treatment of youth depression.


Asunto(s)
Edad de Inicio , Trastorno Depresivo Mayor , Calidad de Vida , Humanos , Masculino , Trastorno Depresivo Mayor/epidemiología , Trastorno Depresivo Mayor/psicología , Femenino , Estudios Transversales , Calidad de Vida/psicología , Adolescente , Adulto , Estudios Retrospectivos , Factores Sexuales , Persona de Mediana Edad , Adulto Joven , Prevalencia , Niño , Trastornos Mentales/epidemiología , Trastornos Mentales/psicología , Intento de Suicidio/estadística & datos numéricos , Trastornos de Ansiedad/epidemiología , Trastornos de Ansiedad/psicología , Estados Unidos/epidemiología , Estudios de Cohortes , Anciano
10.
Cancer ; 2024 Jun 21.
Artículo en Inglés | MEDLINE | ID: mdl-39031642

RESUMEN

BACKGROUND: [177Lu]Lu-PSMA-617 (177Lu-PSMA-617) plus protocol-permitted standard of care (SOC) prolonged overall survival (OS) and radiographic progression-free survival (rPFS) versus SOC in patients with prostate-specific membrane antigen (PSMA)-positive metastatic castration-resistant prostate cancer (mCRPC) in the phase 3 VISION study, in addition to beneficial effects on symptomatic skeletal events (SSEs) and health-related quality of life (HRQOL). METHODS: Post hoc analyses used the full analysis set from the VISION study (N = 831) overall and by randomized treatment arm (177Lu-PSMA-617 plus SOC, n = 551; SOC, n = 280). Correlations were determined between OS and rPFS and between rPFS or OS and time to SSE or to worsening HRQOL (Functional Assessment of Cancer Therapy-Prostate [FACT-P] and 5-level EQ-5D [EQ-5D-5L]). Correlation analyses used an iterative multiple imputation copula-based approach (correlation coefficients [rho] of <0.3 were defined as weak, ≥0.3 and <0.5 as mild, ≥0.5 and <0.7 as moderate, and ≥0.7 as strong). RESULTS: In the overall population, rPFS correlated strongly with OS (rho, ≥0.7). Correlations between rPFS or OS and time to SSE without death were weak or mild. Time to worsening in the FACT-P total score and emotional and physical well-being domains correlated mildly or moderately with rPFS and moderately with OS. Correlation coefficients for time-to-worsening EQ-5D-5L scores were mild to moderate for both rPFS and OS. Correlation coefficients were similar between treatment arms. CONCLUSIONS: In this analysis of the VISION study, rPFS correlated strongly with OS but not with time to SSE or worsening HRQOL. These findings require further investigation.

11.
Orphanet J Rare Dis ; 19(1): 252, 2024 Jul 04.
Artículo en Inglés | MEDLINE | ID: mdl-38965628

RESUMEN

BACKGROUND: Lysosomal storage diseases (LSDs) are a group of rare inherited metabolic disorders, consisting of over 70 diseases that are characterised by lysosomal dysfunction. Due to their varied and progressive symptoms, LSDs have a continual impact on patients' health-related quality of life (HRQoL). Several recently published studies have provided insight into the HRQoL of individuals with LSDs. However, it is challenging to meaningfully synthesise this evidence, since studies often focus upon a particular type of LSD and / or utilise different self-report questionnaires or patient-reported outcome measures (PROMs) to assess HRQoL. AIMS: The aim of this study was to review the published literature in LSDs, to identify the PROMs which have been used to assess HRQoL and generate a conceptual map of HRQoL domains measured in individuals diagnosed with LSDs. METHODS: Three electronic databases were searched in March 2022. Primary studies of any design which utilised multi-item PROMs to assess at least one aspect of HRQoL in individuals with LSDs since 2017 were identified. Data were extracted to assess both the characteristics of each study and of the PROMs utilised within each study. The extraction of HRQoL domains and synthesis were informed by an a priori framework, inductively modified to reflect data emerging from the identified literature. Selection and extraction was undertaken independently by two reviewers; discrepancies were ratified by a third reviewer. RESULTS: Sixty nine studies were identified which were published 2017-2022, with a combined total of 52 PROMs (71 variants) used to assess HRQoL in individuals with LSDs. The final extracted HRQoL framework included 7 domains (Activities; Physical sensations; Autonomy; Cognition; Feelings and emotions; Self-identity; Relationships), characterised by 37 sub-domains. CONCLUSIONS: This review highlights the breadth and variety of HRQoL domains assessed in individuals with LSDs, across three broad domains of physical, psychological and social functioning. The resultant framework and mapped PROMs will aid researchers and clinicians in the selection of PROMs to assess aspects of HRQoL in people living with LSDs, based on their conceptual coverage.


Asunto(s)
Enfermedades por Almacenamiento Lisosomal , Calidad de Vida , Humanos , Enfermedades por Almacenamiento Lisosomal/psicología , Medición de Resultados Informados por el Paciente , Encuestas y Cuestionarios
12.
Soc Sci Med ; 354: 117073, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38959817

RESUMEN

The SF-6D health descriptive system and its second version published in 2020, the SF-6Dv2, is used worldwide for valuing health-related quality of life (HRQoL) for economic evaluation and measuring patient-reported health outcomes. In this study, a valuation tool was developed and applied to create a social value set, comprising 18,750 health state values, for the SF-6Dv2 for New Zealand (NZ). This tool was adapted and extended from the one used to create a social value set for the EQ-5D-5L, a simpler health descriptive system with fewer dimensions and health states. The tool implements the PAPRIKA method, a type of adaptive discrete choice experiment, and a binary search algorithm to identify health states worse than dead and has extensive data quality controls to ensure the validity and reliability of the social value set derived from participants' personal value sets. The tool, accompanied by a short introductory video designed specifically for the SF-6Dv2, was distributed via an online survey to a large representative sample of adult New Zealanders in June-July 2022. The tool's data quality controls enabled participants who failed to understand or sincerely engage with the valuation tasks to be identified and excluded, resulting in the participants being pared down to a sub-sample of 2985 'high-quality' participants whose personal value sets were averaged for the social value set. These results, including participants' positive feedback, demonstrate the feasibility and acceptability of using the tool to value larger health descriptive systems such as the SF-6Dv2. Having successfully created an SF-6Dv2 social value set for NZ, the valuation tool can be readily applied to other countries, used to generate personal value sets for personalised medicine and adapted to create value sets for other health descriptive systems.


Asunto(s)
Calidad de Vida , Valores Sociales , Humanos , Nueva Zelanda , Adulto , Masculino , Femenino , Persona de Mediana Edad , Encuestas y Cuestionarios , Reproducibilidad de los Resultados , Estado de Salud , Anciano , Psicometría/instrumentación , Psicometría/métodos
13.
J Hepatol ; 2024 Jul 13.
Artículo en Inglés | MEDLINE | ID: mdl-39009085

RESUMEN

BACKGROUND & AIMS: Once-daily treatment of chronic hepatitis delta (CHD) with bulevirtide is well tolerated and associated with significant reductions in HDV RNA in the blood and in biochemical liver disease activity. This study explored the effects of 48-week bulevirtide treatment on health-related quality of life (HRQoL) in patients with CHD. METHODS: In an open-label, randomised, Phase 3 trial, 150 patients with CHD and compensated liver disease were stratified by liver cirrhosis status and randomised 1:1:1 to no treatment (control), bulevirtide 2 mg/day, or bulevirtide 10 mg/day for 48 weeks. HRQoL was evaluated by the following patient-reported outcome (PRO) instruments at baseline, 24 weeks, and 48 weeks: EQ-5D-3L, Hepatitis Quality of Life Questionnaire (HQLQ), and Fatigue Severity Scale (FSS). RESULTS: Patient characteristics and HRQoL scores were balanced at baseline between the treatment (2 mg, n = 49; 10 mg, n = 50) and control (n = 51) groups. Patients receiving 2-mg bulevirtide reported significant improvements compared with controls on the HQLQ domains of role physical, hepatitis-specific limitations, and hepatitis-specific health distress. Numerically higher scores for general health, hepatitis-specific limitations, and hepatitis-specific health distress domains were reported by patients with cirrhosis who received bulevirtide vs control. FSS scores remained stable across treatment groups throughout. At week 48, patients in the 2-mg group showed greater mean improvement from baseline in health status compared with controls on the EQ-5D-3L visual analogue scale. CONCLUSION: PROs indicate that 48-week treatment with bulevirtide monotherapy may improve aspects of HRQoL in patients with CHD. IMPACT AND IMPLICATIONS: Bulevirtide 2 mg is the only approved treatment for patients with chronic hepatitis delta (CHD) in the EU. Patients with CHD have worse quality of life scores than those with chronic hepatitis B. Bulevirtide treatment for 48 weeks reduced HDV RNA and alanine aminotransferase levels and was well tolerated among patients with CHD. For the first time, this study shows that patients who received bulevirtide therapy for 48 weeks reported improvements in physical and hepatitis-related quality of life domains compared to those who did not receive therapy (control group). CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov Identifier, NCT03852719.

14.
Respir Care ; 2024 Jul 23.
Artículo en Inglés | MEDLINE | ID: mdl-39043423

RESUMEN

BACKGROUND: Post-COVID-19 syndrome has affected millions of people, with rehabilitation being at the center of non-pharmacologic care. However, numerous published studies show conflicting results due to, among other factors, considerable variation in subject characteristics. Currently, the effects of age, sex, time of implementation, and prior disease severity on the outcomes of a supervised rehabilitation program after COVID-19 remain unknown. METHODS: This was a non-randomized case-control study. Subjects with post-COVID-19 sequelae were enrolled. Among study participants, those who could attend an 8-week, supervised rehabilitation program composed the intervention group, whereas those who couldn't the control group. Measurements were collected at baseline and 8 weeks thereafter. RESULTS: Study groups (N = 119) had similar baseline measurements. Participation in rehabilitation (n = 47) was associated with clinically important improvements in the 6-min walk test (6MWT) distance, adjusted (for potential confounders) odds ratio (AOR) 4.56 (95% CI 1.95-10.66); 1-min sit-to-stand test, AOR 4.64 (1.88-11.48); Short Physical Performance Battery, AOR 7.93 (2.82-22.26); health-related quality of life (HRQOL) 5-level EuroQol-5D (Visual Analog Scale), AOR 3.12 (1.37-7.08); Montreal Cognitive Assessment, AOR 6.25 (2.16-18.04); International Physical Activity Questionnaire, AOR 3.63 (1.53-8.59); Fatigue Severity Scale, AOR 4.07 (1.51-10.98); Chalder Fatigue Scale (bimodal score), AOR 3.33 (1.45-7.67); Modified Medical Research Council dyspnea scale (mMRC), AOR 4.43 (1.83-10.74); Post-COVID-19 Functional Scale (PCFS), AOR 3.46 (1.51-7.95); and COPD Assessment Test, AOR 7.40 (2.92-18.75). Time from disease onset was marginally associated only with 6MWT distance, AOR 0.99 (0.99-1.00). Prior hospitalization was associated with clinically important improvements in the mMRC dyspnea scale, AOR 3.50 (1.06-11.51); and PCFS, AOR 3.42 (1.16-10.06). Age, sex, and ICU admission were not associated with the results of any of the aforementioned tests/grading scales. CONCLUSIONS: In this non-randomized, case-control study, post-COVID-19 rehabilitation was associated with improvements in physical function, activity, HRQOL, respiratory symptoms, fatigue, and cognitive impairment. These associations were observed independently of timing of rehabilitation, age, sex, prior hospitalization, and ICU admission.

15.
Health Sci Rep ; 7(7): e2217, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-39006151

RESUMEN

Background and Aims: Acquired immune deficiency syndrome (AIDS) are a chronic and disabling disease that has a significant impact on quality of life due to weakening of physical health, financial problems and social stigma. This study aims to validate the Health-related quality of life (HRQOL) model in people with human immunodeficiency viruses (HIV) in Iran. Methods: Four hundred and fifty-two people with HIV from Imam Khomeini Hospital between the age of 18 and 65 years (men: 308, women: 144) participated in the research. anonymously completed a battery of questionnaires, namely the Persian basic psychological need satisfaction and frustration scale, SF-36, PSQI and mindful attention awareness scale. The method of the present study was the structural equation model. Results: Current findings indicated there is a significant positive between mindfulness and need satisfaction, physical and mental health and, significant negative between mindfulness and quality and quantity of sleep. Mindfulness and need satisfaction are significant positive predictors of quality of life in people with HIV. Quality and quantity of sleep are significant negative predictors of quality of life in people with HIV. There is a positive significance between need satisfaction and physical and mental health but there is a negative significance between need satisfaction and quality and quantity. there is a negative significant between the quality and quantity of sleep with physical and mental health. Mindfulness facilitates the satisfaction of more psychological needs and improves the quality of sleep. The quality of sleep is a negative significant predictor for physical and mental health but the quantity of sleep is a negative significant predictor for physical health. Conclusion: The HRQOL model can explain 18% of physical health and 16% of mental health in people with HIV in Iran. The elements of this model can be useful in evaluating and treating people with HIV in the Iranian Population. They also can use the models to plan for better services.

16.
Physiol Rep ; 12(13): e16140, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38997217

RESUMEN

The brain derived-neurotrophic factor (BDNF) Val66Met polymorphism causes functional changes in BDNF, and is associated with obesity and some psychiatric disorders, but its relationship to health-related quality of life (HRQoL) remains unknown. This study examined, in youth with obesity, whether carriers of the BDNF Val66met polymorphism Met-alleles (A/A or G/A) differed from noncarriers (G/G) on HRQoL. The participants were 187 adolescents with obesity. Ninety-nine youth were carriers of the homozygous Val/Val (G/G) alleles, and 88 were carriers of the Val/Met (G/A) or Met/Met (A/A) alleles. Blood samples were drawn in the morning after an overnight fast for genotyping. HRQoL was measured using the Pediatric-Quality of Life core version. Compared to carriers of the Val66Met Val (G/G) alleles, carriers of the Met-Alleles reported significantly higher physical -HRQoL (p = 0.02), school-related HRQoL, (p = 0.05), social-related HRQoL (p = 0.05), and total HRQoL (p = 0.03), and a trend for Psychosocial-HRQoL. Research is needed to confirm our findings and determine whether carriers of the BDNF Val66Met homozygous Val (G/G) alleles may be at risk of diminished HRQoL, information that can influence interventions in a high-risk population of inactive youth with obesity.


Asunto(s)
Factor Neurotrófico Derivado del Encéfalo , Polimorfismo de Nucleótido Simple , Calidad de Vida , Humanos , Factor Neurotrófico Derivado del Encéfalo/genética , Factor Neurotrófico Derivado del Encéfalo/sangre , Masculino , Adolescente , Femenino , Niño , Obesidad/genética , Obesidad/psicología , Obesidad Infantil/genética , Obesidad Infantil/psicología
17.
Laryngoscope Investig Otolaryngol ; 9(4): e1304, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-39071204

RESUMEN

Background: The Ear Outcome Survey-16 (EOS-16) has been validated according to the health-related quality of life (HRQol) survey guidelines. It has important compatible aspects in evaluating patients with chronic otitis media (COM) suitable for consultation. This study aimed to develop and standardize the Arabic version of the EOS-16 to be used by clinicians in the Arab world while maintaining the conceptual equivalence. Methods: A prospective cross-sectional study was conducted in Damascus between July 2023 and November 2023 to develop an Arabic version of the EOS-16. The translation was produced according to the cross-cultural adaptation guidelines. Both experts' and participants' opinions as regards face validity were obtained in this study. Internal consistency was evaluated by the Cronbach alpha coefficient. Test-retest reliability was assessed using the intraclass correlation coefficient (ICC) and Pearson correlation. Results: A total of 81 patients enrolled in the study, with an average age of 34.75 years and a standard deviation of 11.84 years with a sex ratio of 0.62 for females. All had inactive mucosal COM (dry perforation). The overall score of the EOS-16 survey was 31.72 with a standard deviation of 13.42 suggesting bothering and influencing symptoms in COM patient's daily life. Excellent internal consistency was noted (Cronbach α = .89). Robust correlation was found between test-retest overall scores (r = .90). Reallocation of the items of the EOS-16 improved the internal consistency of the subdivisions in COM patients. Conclusion: The Arabic version of the EOS-16 is a simple, clear, reliable, reproducible, and valid HRQoL survey. It is a useful and important instrument that helps physicians in making decisions regarding the patient's treatment and follow-up.

18.
Chin Clin Oncol ; 13(4): 50, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38859605

RESUMEN

BACKGROUND: Sarcomas are heterogeneous rare cancers, and while they affect 1% of all adult cancers, they affect 10-20% of adolescents and young adults (AYAs). The 5-year survival rates range between 50-60% but have remained stagnant. While the management of bony sarcomas (BS) usually involves systemic treatment and major morbid surgeries, functional outcomes and quality of life have been largely overlooked. METHODS: A literature search was conducted on PubMed and ScienceDirect using key search terms of "Adolescent and young adult", "AYAO", "bone sarcoma, osteosarcoma, Ewing sarcoma", "functional outcomes" and "health-related quality of life" from 1st January 2003 to 13 March 2023. A total of 858 results in total were screened by two independent authors, and 18 selected papers were included in the scoping review. RESULTS: AYAs have poorer outcomes in all aspects-physical, social and psychological in BS survivorship, as many changes from disease and treatment are usually persistent and irreversible, with significant impact on mobility, function and body image. Current tools to assess health-related quality of life (HRQoL) in AYAs are not standardized or validated in this age group. Subjective tools measuring physical outcomes do not correlate to objective measures of physical function. CONCLUSIONS: These outcomes have a direct connection to their independence, self-confidence and future job endeavors, yet hardly any specific research has gone into it. They are stricken with a cancer diagnosis during the prime of their lives and it is essential to manage them holistically to preserve and maximize their functional outcomes. More research is required to monitor their outcomes long-term post-treatment and into survivorship.


Asunto(s)
Calidad de Vida , Sarcoma , Humanos , Adolescente , Adulto Joven , Sarcoma/terapia , Masculino , Neoplasias Óseas/psicología , Neoplasias Óseas/terapia , Femenino , Adulto
19.
Heliyon ; 10(11): e31948, 2024 Jun 15.
Artículo en Inglés | MEDLINE | ID: mdl-38841441

RESUMEN

Purpose: This study aims to identify the key factors influencing health-related quality of life (HRQoL) of pediatric acute myeloid leukemia (AML) patients following their initial diagnosis and examine their impact on the five-year survival prognosis. Methods: A chart review and follow-up were conducted for children with AML who participated in a prospective cohort study between 2017 and 2020. We identified factors influencing HRQoL through Pediatric Quality of Life Inventory™ (PedsQL™ 4.0), PedsQL™ Cancer Module 3.0 (CM 3.0) and PedsQL™ Family Impact Module 2.0 (FIM 2.0), as well as assessed the impact of impaired HRQoL on the overall outcomes of patients. Results: Sixty-four subjects enrolled in the study had complete HRQoL outcome data, and 61 of them completed the 5-year follow-up. In CM 3.0, age was positively associated with parental proxy reports (p = 0.040), whereas divorced families were negatively associated with child self-reports (p = 0.045). A positive medical history correlates with FIM 2.0 (p = 0.025). Residence (p = 0.046), the occupation of caregivers (p = 0.014), disease severity (p = 0.024), and the only child (p = 0.029) exhibited statistically significant associations with the impairment of HRQoL. Impaired HRQoL scores shown by the PedsQL™4.0 parent proxy report (p = 0.013) and FIM 2.0 (p = 0.011) were associated with a reduced 5-year survival rate. Conclusions: This study demonstrated that early impairment of HRQoL in pediatric acute myeloid leukemia patients has predictive value for long-term prognosis. Once validated, these findings may provide some guidance to clinicians treating children with AML.

20.
Cureus ; 16(5): e60804, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38910767

RESUMEN

The Setting International Standards in Analyzing Patient-Reported Outcomes and Quality of Life Endpoints Data (SISAQOL) initiative was established in 2016 to assess the quality and standardization of patient-reported outcomes (PRO) data analysis in randomized controlled trials (RCTs) on advanced breast cancer. The initiative identified deficiencies in PRO data reporting, including nonstandardized methods for handling missing data. This study evaluated the reporting of health-related quality of life (HRQOL) in Japanese cancer RCTs to provide insights into the state of PRO reporting in Japan. The study reviewed PubMed articles published from 2010 to 2018. Eligible studies included Japanese cancer RCTs with ≥50 adult patients (≥50% were Japanese) with solid tumors receiving anticancer treatments. The evaluation criteria included clarity of the HRQOL hypotheses, multiplicity testing, primary analysis methods, and reporting of clinically meaningful differences. Twenty-seven HRQOL trials were identified. Only 15% provided a clear HRQOL hypothesis, and 63% examined multiple HRQOL domains without adjusting for multiplicity. Model-based methods were the most common statistical methods for the primary HRQOL analysis. Only 22% of the trials explicitly reported clinically meaningful differences in HRQOL. Baseline assessments were reported in most trials, but only 26% reported comparisons between the treatment groups. HRQOL analysis was based on the intention-to-treat population in 19% of the trials, and 74% reported compliance at follow-up; however, 41% did not specify how missing values were handled. Although the rates of reporting clinical hypotheses and clinically meaningful differences were relatively low, the current state of HRQOL evaluation in the Japanese cancer RCT appears comparable to that of previous studies.

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