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1.
JMIR Public Health Surveill ; 10: e51416, 2024 Jul 05.
Artigo em Inglês | MEDLINE | ID: mdl-38989838

RESUMO

Background: There are positive and negative correlations in different directions between smoking, personality traits, and health-related quality of life (HRQOL), where smoking may mask the pathway between personality traits and HRQOL. Understanding the masking pathway of smoking between personality traits and HRQOL can elucidate the mechanisms of smoking's psychosocial effects and provide new ideas for developing tobacco control strategies. Objective: The purpose of this study was to investigate the correlation between Big Five personality traits and HRQOL and whether smoking mediates the relationship between them. Methods: This was a cross-sectional study using data from 21,916 respondents from the 2022 Psychology and Behavior Investigation of Chinese Residents survey. Linear regression models were used to analyze the correlations between smoking, Big Five personality traits, and HRQOL while controlling for potential confounders. The mediating role of smoking on the association between Big Five Personality traits and HRQOL was analyzed using the Sobel-Goodman mediation test. Results: Extraversion (ß=.001; P=.04), agreeableness (ß=.003; P<.001), and neuroticism (ß=.003; P<.001) were positively correlated with HRQOL, whereas openness was negatively correlated with HRQOL (ß=-.001; P=.003). Smoking was associated with a decrease in HRQOL and mediated the positive effect of HRQOL on extraversion (z=-2.482; P=.004), agreeableness (z=-2.264; P=.02), and neuroticism (z=-3.230; P=.001). Subgroup analyses further showed that smoking mediated the effect of neuroticism on HRQOL in the population with chronic illnesses (z=-2.724; P=.006), and in the population without chronic illnesses, smoking contributed to the effect of HRQOL on extraversion (z=-2.299; P=.02), agreeableness (z=-2.382; P=.02), and neuroticism (z=-2.213; P=.03). Conclusions: This study provided evidence that there is a correlation between personality traits and HRQOL. It also found that smoking plays a role in mediating the connection between personality traits and HRQOL. The development of future tobacco control strategies should consider the unique traits of each individual's personality, highlighting the significance of extraversion, agreeableness, and neuroticism.


Assuntos
Personalidade , Qualidade de Vida , Fumar , Humanos , Estudos Transversais , Qualidade de Vida/psicologia , Masculino , Feminino , Adulto , Fumar/psicologia , Fumar/epidemiologia , Pessoa de Meia-Idade , China/epidemiologia , Inquéritos e Questionários , Idoso , Adolescente , Adulto Jovem
2.
Soc Sci Med ; 354: 117073, 2024 Jun 26.
Artigo em Inglês | MEDLINE | ID: mdl-38959817

RESUMO

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.

3.
Value Health ; 2024 Jul 06.
Artigo em Inglês | MEDLINE | ID: mdl-38977191

RESUMO

OBJECTIVES: There is a lack of monitoring changes in the population scores of the most recent version, EQ-5D-5L, in mainland China. This study aims to address this knowledge gap by assessing the EQ-5D-5L scores in mainland China using a nationally representative sample. METHODS: Data were extracted from the 2021 Survey of Health Index of Chinese Families, which covered 31 provinces/autonomous regions/municipalities in mainland China. The survey employed a multi-stage quota sampling strategy encompassing 120 prefecture-level cities. Quotas were allocated to each prefecture-level city in accordance with the 2020 China Population Census. This approach resulted in a final sample of 11,030 eligible questionnaires. The utility index and EQ Visual Analogue Scale (VAS) scores were reported for the entire sample (age-gender-urban/rural weighted) and by the characteristics of the study participants. RESULTS: The study participants had a weighted mean utility index of 0.939 (SD=0.135) and EQ VAS score of 80.19 (SD=18.39). The most commonly reported problem was anxiety/depression (26.37%), while self-care was the least reported problem (6.18%). Those who were male, younger, lived without chronic conditions and disabilities, had higher levels of education, earned higher monthly household income, and were covered by basic medical insurance for urban employees had higher scores in both the utility index and EQ VAS. CONCLUSION: This study revealed slightly lower utility index scores despite a much higher drop in EQ VAS scores while China maintained minimum cases of COVID-19 in 2021 compared to the population norms recorded in 2019. Further studies are warranted to unveil the full impacts of COVID-19 outbreaks.

4.
Artigo em Inglês | MEDLINE | ID: mdl-38959166

RESUMO

Purpose: Despite improvements in survival, adolescent and young adult (AYA) oncology patients are at high risk for experiencing negative health-related quality of life (HRQOL) outcomes. AYA cancer programs have attempted to develop assessment tools to identify areas of need. We aimed to demonstrate the feasibility/utility of the Patient-Reported Outcome Measurement Information System®-29 (PROMIS®-29) within an AYA oncology program clinic. Methods: AYA patients were referred by oncologists to the AYA oncology program at Prisma Health. The PROMIS-29 v2.0 survey was administered to AYAs at point of care. Feasibility of distribution and completion rate of surveys were determined. PROMIS surveys were self-reported and subsequently scored using standardized methods. The domains assessed included physical function, anxiety, depression, fatigue, sleep disturbance, ability to participate in social roles/activities, pain interference, and pain intensity. Qualitative descriptions of AYA care delivery based on survey responses at the patient level and programmatic level are also presented. Results: Between May 2017 and 2019, 134 AYAs who were newly diagnosed or in treatment completed the survey. Distribution and completion rates for the PROMIS-29 were both 100%, and meaningful changes in program-level services were implemented as a result of PROMIS-29 score patterns. Within the entire cohort, T-scores for anxiety, fatigue, and physical function reached clinically relevant thresholds. Conclusion: PROMIS offers a feasible opportunity for AYA programs to measure clinically useful HRQOL outcomes in AYAs. The survey can be used to deliver real-time AYA care to recently diagnosed and in-treatment AYAs and make programmatic changes within AYA oncology programs.

5.
Eur J Pediatr ; 2024 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-38955848

RESUMO

Physical activity (PA) is an important predictor of physical and mental health preventing chronic degenerative diseases. The purpose of this study was to investigate in a group of Italian high school students whether health-related quality of life (HRQoL) and lifestyle habits (diet) are associated with the level of physical activity performed (low, moderate, high). Data were collected from 2819 adolescents (n = 951 males). HRQoL was analyzed using the Italian version of the KIDSCREEN-52. Physical activity level was analyzed using the PAQ-A, while eating habits with KIDMED. Practicing physical activity in general improves HRQoL. Specifically, adolescents practicing moderate or high PA, in single dimensions of HRQoL, showed better mood (p < 0.001), self-perception (p < 0.001), family relationships (p < 0.001), reported a higher perception of socioeconomic status (p < 0.05), relationship with peers (p < 0.001), and social acceptance (p < 0.001). High PA subjects reported increased physical (p < 0.001) and mental health (p < 0.001), increased autonomy (p < 0.001), and school learning (p < 0.001). For lifestyle habits, practicing moderate PA showed higher adherence tox the Mediterranean diet (p < 0.001). Conclusion: Our results highlighted a positive association between the frequency of PA levels, some dimensions of HRQoL, and risk behaviors. These findings demonstrated the protective role of sports not only as a preventive strategy for the onset of chronic degenerative diseases, but also as an educator of healthy lifestyle habits, thus suggesting the importance and need to implement strategies to promote sports practice.

6.
Orphanet J Rare Dis ; 19(1): 252, 2024 Jul 04.
Artigo em Inglês | MEDLINE | ID: mdl-38965628

RESUMO

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.


Assuntos
Doenças por Armazenamento dos Lisossomos , Qualidade de Vida , Humanos , Doenças por Armazenamento dos Lisossomos/psicologia , Medidas de Resultados Relatados pelo Paciente , Inquéritos e Questionários
7.
Lung Cancer ; 193: 107843, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38830303

RESUMO

BACKGROUND: In an open-label multicenter non-randomized non-comparative phase II study in patients with stage IIIB/IV non-squamous non-small cell lung cancer (NSCLC), oncogenic addiction (EGFR mutation or ALK/ROS1 fusion), with disease progression after tyrosine-kinase inhibitor and no prior chemotherapy (NCT04042558), atezolizumab, carboplatin, pemetrexed with or without bevacizumab showed some promising result. Beyond the clinical evaluation, we assessed safety and patient-reported outcomes (PROs) to provide additional information on the relative impact of adding atezolizumab to chemotherapy with and without bevacizumab in this population. MATERIALS: Patients received platinum-pemetrexed-atezolizumab-bevacizumab (PPAB cohort) or, if not eligible, platinum-pemetrexed-atezolizumab (PPA cohort). The incidence, nature, and severity of adverse events (AEs) were assessed. PROs were evaluated using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-Core 30 and EORTC QLQ-Lung Cancer 13). RESULT: Overall, 68 (PPAB) and 72 (PPA) patients were evaluable for safety. Grade 3-4 AEs occurred in 83.8% (PPAB) and 63.9% (PPA). Grade 3-4 atezolizumab-related AEs occurred in 29.4% and 19.4%, respectively. Grade 3-4 bevacizumab-related AEs occurred in 36.8% (PPAB). Most frequent grade 3-4 AEs were neutropenia (19.1% in PPAB; 23.6% in PPA) and asthenia (16.2% in PPAB; 9.7% in PPA). In PPAB, we observed a global stability in global health security (GHS) score, fatigue and dyspnea with a constant tendency of improvement, and a significant improvement in cough. In PPA, we observed a significant improvement in GHS score with a significant improvement in fatigue, dyspnea and cough. At week 54, we observed an improvement from baseline in GHS score for 49.2% of patients. In both cohorts, patients reported on average no clinically significant worsening in their overall health or physical functioning scores. CONCLUSION: PPAB and PPA combinations seem tolerable and manageable in patients with stage IIIB/IV non-squamous NSCLC with oncogenic addiction (EGFR mutation or ALK/ROS1 fusion) after targeted therapies.


Assuntos
Quinase do Linfoma Anaplásico , Anticorpos Monoclonais Humanizados , Protocolos de Quimioterapia Combinada Antineoplásica , Bevacizumab , Carcinoma Pulmonar de Células não Pequenas , Receptores ErbB , Neoplasias Pulmonares , Mutação , Estadiamento de Neoplasias , Medidas de Resultados Relatados pelo Paciente , Proteínas Tirosina Quinases , Proteínas Proto-Oncogênicas , Humanos , Carcinoma Pulmonar de Células não Pequenas/tratamento farmacológico , Carcinoma Pulmonar de Células não Pequenas/genética , Carcinoma Pulmonar de Células não Pequenas/patologia , Neoplasias Pulmonares/tratamento farmacológico , Neoplasias Pulmonares/genética , Neoplasias Pulmonares/patologia , Masculino , Bevacizumab/uso terapêutico , Bevacizumab/administração & dosagem , Feminino , Anticorpos Monoclonais Humanizados/uso terapêutico , Anticorpos Monoclonais Humanizados/administração & dosagem , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapêutico , Protocolos de Quimioterapia Combinada Antineoplásica/efeitos adversos , Receptores ErbB/genética , Quinase do Linfoma Anaplásico/genética , Pessoa de Meia-Idade , Idoso , Proteínas Proto-Oncogênicas/genética , Adulto , Idoso de 80 Anos ou mais , Terapia de Alvo Molecular , Proteínas de Fusão Oncogênica/genética , Progressão da Doença , Qualidade de Vida
8.
Cureus ; 16(5): e60804, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38910767

RESUMO

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.

9.
Support Care Cancer ; 32(7): 443, 2024 Jun 19.
Artigo em Inglês | MEDLINE | ID: mdl-38896166

RESUMO

PURPOSE: This study aims to investigate the joint effects of cancer and sleep disorders on the health-related quality of life (HRQoL), healthcare resource utilization, and expenditures among US adults. METHODS: Utilizing the 2018-2019 Medical Expenditure Panel Survey (MEPS) database, a sample of 25,274 participants was categorized into four groups based on cancer and sleep disorder status. HRQoL was assessed using the VR-12 questionnaire. Generalized linear model (GLM) with a log-linear regression model combined gamma distribution was applied for the analysis of healthcare expenditure data. RESULTS: Individuals with both cancer and sleep disorders (C+/S+) exhibited notably lower physical health (PCS) and mental health (MCS) scores-1.45 and 1.87 points lower, respectively. They also showed significantly increased clinic visits (2.12 times), outpatient visits (3.59 times), emergency visits (1.69 times), and total medical expenditures (2.08 times) compared to those without cancer or sleep disorders (C-/S-). In contrast, individuals with sleep disorders alone (C-/S+) had the highest number of prescription drug usage (2.26 times) and home health care days (1.76 times) compared to the reference group (C-/S-). CONCLUSIONS: Regardless of cancer presence, individuals with sleep disorders consistently reported compromised HRQoL. Furthermore, those with cancer and sleep disorders experienced heightened healthcare resource utilization, underscoring the considerable impact of sleep disorders on overall quality of life. IMPLICATIONS FOR CANCER SURVIVORS: The findings of this study address the importance of sleep disorders among cancer patients and their potential implications for cancer care. Healthcare professionals should prioritize screening, education, and tailored interventions to support sleep health in this population.


Assuntos
Gastos em Saúde , Neoplasias , Aceitação pelo Paciente de Cuidados de Saúde , Qualidade de Vida , Transtornos do Sono-Vigília , Humanos , Masculino , Neoplasias/complicações , Feminino , Pessoa de Meia-Idade , Transtornos do Sono-Vigília/etiologia , Transtornos do Sono-Vigília/epidemiologia , Idoso , Adulto , Gastos em Saúde/estatística & dados numéricos , Estados Unidos , Inquéritos e Questionários , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Veteranos/estatística & dados numéricos , Adulto Jovem
10.
Qual Life Res ; 2024 Jun 19.
Artigo em Inglês | MEDLINE | ID: mdl-38896183

RESUMO

PURPOSE: Androgen deprivation therapy (ADT) is a cornerstone treatment for advanced and metastatic prostate cancer. Real-world and patient-reported insights into ADT's impact on health-related quality of life (HRQoL) and communication experiences in healthcare settings remain underexplored. This patient organisation-initiated online survey aimed to assess these aspects. METHODS: Between December 2022 and August 2023, the patient organisation Think Blue Vlaanderen and the AZ Sint-Jan Hospital (Bruges, Belgium) invited ADT-treated patients to participate in a prospective, online, cross-sectional, patient-reported outcome survey. Demographic, clinical, HRQoL (FACT and EPIC-26), communication sources and information modality data were collected. Descriptive statistics and comparative analyses were applied. RESULTS: A total of 276/312 (88.5%) participating patients were on ADT at time of survey administration and completion, with the majority receiving a 3-monthly regimen. Sexual HRQoL was low and narrowly distributed (median (IQR): 16.7 (16.7-16.7)), with 84% of patients having erectile dysfunction (ED). Patients finding their ED problematic were more likely to seek pharmaceutical treatment. Hormonal HRQoL was widely distributed (median (IQR): 65 (45-85)), which improved with prolonged ADT duration. Physically active patients reported less lack of energy, but increased hot flashes. Within consistent FACT-G summary scores (median (IQR): 64.50 (54.75-77.00)), improved emotional wellbeing with prolonged ADT was noted. Multidisciplinary communication and multimodal information provision improved patient satisfaction. CONCLUSION: Patient organisation-initiated surveys offer real-world and patient-reported insights. Patient-tailored HRQoL assessments and longitudinal follow-up, physical activity, and multidisciplinary and multimodal communication approaches are warranted to improve patient-centred care in patients receiving ADT.

11.
EJHaem ; 5(3): 541-547, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38895066

RESUMO

A recent evidence gaps assessment of the clinical, health-related quality of life, and economic burden associated with α-thalassemia is lacking. We conducted a systematic literature review (SLR) following the methodological and reporting requirements of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses and the Cochrane Handbook for Systematic Reviews, using available literature over the past decade. This SLR identified a considerable evidence gap with regard to understanding the current burden of α-thalassemia as evident from paucity of studies published in the past 10 years. The limited data available still indicate that patients with α-thalassemia experience substantial morbidity and quality of life/economic burden that is generally comparable to patients with ß-thalassemia.

12.
BMC Infect Dis ; 24(1): 557, 2024 Jun 04.
Artigo em Inglês | MEDLINE | ID: mdl-38834971

RESUMO

BACKGROUND: Evidence continues to accumulate regarding the potential long-term health consequences of COVID-19 in the population. To distinguish between COVID-19-related symptoms and health limitations from those caused by other conditions, it is essential to compare cases with community controls using prospective data ensuring case-control status. The RESPIRA study addresses this need by investigating the lasting impact of COVID-19 on Health-related Quality of Life (HRQoL) and symptomatology in a population-based cohort in Costa Rica, thereby providing a robust framework for controlling HRQoL and symptoms. METHODS: The study comprised 641 PCR-confirmed, unvaccinated cases of COVID-19 and 947 matched population-based controls. Infection was confirmed using antibody tests on enrollment serum samples and symptoms were monitored monthly for 6 months post-enrolment. Administered at the 6-month visit (occurring between 6- and 2-months post-diagnosis for cases and 6 months after enrollment for controls), HRQoL and Self-Perceived Health Change were assessed using the SF-36, while brain fog, using three items from the Mental Health Inventory (MHI). Regression models were utilized to analyze SF-36, MHI scores, and Self-Perceived Health Change, adjusted for case/control status, severity (mild case, moderate case, hospitalized) and additional independent variables. Sensitivity analyses confirmed the robustness of the findings. RESULTS: Cases showed significantly higher prevalences of joint pain, chest tightness, and skin manifestations, that stabilized at higher frequencies from the fourth month post-diagnosis onwards (2.0%, 1.2%, and 0.8% respectively) compared to controls (0.9%, 0.4%, 0.2% respectively). Cases also exhibited significantly lower HRQoL than controls across all dimensions in the fully adjusted model, with a 12.4 percentage-point difference [95%CI: 9.4-14.6], in self-reported health compared to one year prior. Cases reported 8.0% [95%CI: 4.2, 11.5] more physical limitations, 7.3% [95%CI: 3.5, 10.5] increased lack of vitality, and 6.0% [95%CI: 2.4, 9.0] more brain fog compared to controls with similar characteristics. Undiagnosed cases detected with antibody tests among controls had HRQoL comparable to antibody negative controls. Differences were more pronounced in individuals with moderate or severe disease and among women. CONCLUSIONS: PCR-confirmed unvaccinated cases experienced prolonged HRQoL reductions 6 months to 2 years after diagnosis, this was particularly the case in severe cases and among women. Mildly symptomatic cases showed no significant long-term sequelae.


Assuntos
COVID-19 , Qualidade de Vida , Humanos , Costa Rica/epidemiologia , COVID-19/epidemiologia , COVID-19/psicologia , Masculino , Feminino , Pessoa de Meia-Idade , Adulto , Estudos de Casos e Controles , SARS-CoV-2 , Estudos de Coortes , Idoso , Estudos Prospectivos , Adulto Jovem
13.
Chin Clin Oncol ; 2024 Jun 06.
Artigo em Inglês | MEDLINE | ID: mdl-38859605

RESUMO

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.

14.
Patient Prefer Adherence ; 18: 1077-1094, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38854480

RESUMO

Objective: Chronic diseases hold the potential to worsen the overall health of patients by limiting their functional status, productivity, and capacity to live well, affecting their overall health-related quality of life (HRQoL). The purpose of the study was to assess the HRQoL of individuals with chronic diseases residing in the Al-Jouf region of Saudi Arabia. Furthermore, the current study also sought to ascertain the impact of multimorbidity and the duration of illness on HRQoL. Material and Methods: A cross-sectional study was conducted among the residents of Al-Jouf region for a period of 6 months. A self-administered EuroQoL (EQ-5D-5L) study tool was used. Appropriate statistical analysis was conducted to ascertain the relationship between various variables and HRQoL. Results: A total of 500 out of 562 participants completed the study, with a response rate of 88.97%. Participants had a mean age of 46.15 ± 16.79 years, and the majority were female (n = 299; 59.80%). A mean HRQoL score of 0.82 ± 0.20 was reported, poorest in patients with kidney failure (0.65 ± 0.26) and highest in hepatitis. However, nearly half of the participants had diabetes mellitus type II (n = 205, 39.20%). Patients aged <30 years (OR: 0.109; p = 0.002), male participants (OR: 0.053; p < 0.001), no disability (OR: 0.143; p = 0.002), and <2 comorbid diseases (0.84 ± 0.18; p < 0.001) reported better QoL. Additionally, comorbid conditions such as DM, prolong the duration of the overall illness (14.19 ± 7.67 years). Overall, imperfect health (n = 390, 78%) was reported by the study participants. Conclusion: The present study provided preliminary data about the current HRQoL status of individuals with imperfect health and lower HRQoL. In the future, large-scale longitudinal studies are required to investigate the most prevalent chronic diseases, their associations, and change in HRQoL, as there is a dearth of information in the Saudi population.

15.
Yakugaku Zasshi ; 144(6): 685-690, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38825477

RESUMO

Docetaxel (DTX) is a key drug used in perioperative chemotherapy for breast cancer. Edema is a known adverse effect of DTX, but its effect on health-related QOL (HRQOL) is unclear. In this study, we evaluated the effects of edema caused by administration of DTX on HRQOL in patients with early-stage breast cancer. We prospectively investigated patients diagnosed with early-stage breast cancer (stage I-III) who received 4 cycles of DTX as preoperative or postoperative chemotherapy between September 2021 and December 2022 at Yamanashi Prefectural Central Hospital. The circumference of each extremity was measured at each administration of DTX, and limb edema was evaluated by Common Terminology Criteria for Adverse Events version 5.0. HRQOL was evaluated using SF-12 version 2, which has a range of 0-100 (national standard, 50), and compared between the presence and absence of grade 2 or higher edema and between before and after administration of DTX. Twenty patients met the eligibility criteria and were included in the study. There was no difference in the HRQOL score according to whether grade 2 limb edema was present. The median HRQOL summary scores before and after administration of DTX were 51.1 and 50.8 (p=0.763), respectively, for mental health, 52.6 and 49.4 (p=0.005) for physical health, and 38.9 and 37.5 (p=1.000) for role/social health. We found no direct effect of DTX-induced limb edema on HRQOL in patients with early-stage breast cancer. However, HRQOL summary scores indicated that administration of DTX reduced physical health in these patients.


Assuntos
Neoplasias da Mama , Docetaxel , Edema , Qualidade de Vida , Humanos , Docetaxel/efeitos adversos , Docetaxel/administração & dosagem , Neoplasias da Mama/tratamento farmacológico , Feminino , Estudos Prospectivos , Pessoa de Meia-Idade , Edema/induzido quimicamente , Edema/etiologia , Idoso , Estadiamento de Neoplasias , Adulto , Extremidades , Antineoplásicos/efeitos adversos , Assistência Perioperatória
16.
World Neurosurg ; 2024 Jun 03.
Artigo em Inglês | MEDLINE | ID: mdl-38838937

RESUMO

OBJECTIVE: To evaluate the efficacy, safety of patient-tailored 3D printed brace in the treatment of adolescent idiopathic scoliosis (AIS), and to compare the health-related quality of life (HRQoL) of patients treated with two different types of brace. MATERIALS AND METHODS: From September 2017 to August 2020, 103 AIS patients requiring non-operative management were prospectively recruited in this study. All patients were followed up every 6 months, clinical and radiological examination were assessed at each follow-up time. Full-length anteroposterior X-ray of the spine in the standing position was performed obtained. At the last follow-up, each patient completed a standardized HRQoL questionnaire. Compliance is defined as that the patient insists on wearing the brace for ≥ 23h every day (full-time wearing) and follow-up every 6 months until bone maturity.The rate of major curve Cobb progression was defined that maximum Cobb Angle of major curve greater than 6° compared with that at the initial diagnosis, or aggravated to more than 45° so that orthopedic surgery was recommended during treatment, which was defined as the rate of conversion to surgery. The effects of these two types of braces on the rate of major curve Cobb progression and HRQoL were analyzed by independent sample t-test ad Chi-square test. RESULTS: The thickness was 4 mm for thoracolumbosacral orthosis (TLSO) and 3 mm for 3D-printed brace (3DPB). In addition, compared with the material used in TLSO, the weight (600-800 grams) of the 3DPB materials with the same area is reduced by about 25-30%. 55 patients (49.1%) and 48 patients (33.1%) were respectively included in the 3DPB cohort and the TLSO cohort.The maximum Cobb angle of major curve in the 3DPB cohort was significantly lower than those in the TLSO cohort at 6 months, 12 months and the last follow-up (p < 0.01). The thoracic kyphosis (TK) and lumbar lordosis (LL) of the two cohorts at the last follow-up were lower than those before brace treatment, in addition, there was a significant difference in TK (p = 0.001) and LL (p = 0.004) between the two cohorts at the follow-up. The scores of physical function, pain, self-image, mental health and treatment satisfaction in the Chinese version of SRS-22 in the 3DPB cohort were higher than those in the TLSO cohort (p < 0.01 and p < 0.05, respectively). The scores of the 3DPB cohort were significantly higher than those of the TLSO group in the four dimensions (p = 0.008, 0.013, 0.015, and 0.002, respectively) of the EuroQol-5D health description system except for mobility, and the overall health status of EuroQol-5D was higher for the 3DPB cohort (p < 0.001). At the last follow-up, One patient in the 3DPB cohort and ten patients in the TLSO cohort had major curve Cobb progression of greater than 6°, and the rate of major curve Cobb progression in 3DPB cohort was significantly lower than that in the TLSO cohort (OR 14.2, 95% CI 1.7∼115.8, p < 0.01). One patient in the 3DPB and seven patients in the TLSO cohorts received subsequent surgery or was recommended for surgery, and the rate of conversion to surgery was significantly lower than in the 3DPB cohort (OR 9.2, 95% CI 1.1∼77.9, p < 0.05). CONCLUSIONS: Patient-tailored 3D-printed brace is lighter, thinner, and more comfortable than conventional braces in the treatment of AIS. It can substantially improve the HRQoL of patients and can significantly reduce the progression of major curve Cobb progression and rate of conversion of surgery.

17.
Sci Rep ; 14(1): 14057, 2024 06 18.
Artigo em Inglês | MEDLINE | ID: mdl-38890451

RESUMO

This study aimed to explore the mediating effects of ADL and depression on the relationship between sleep quality and HRQOL among older people in rural China, while also exploring the moderating impact of loneliness. The study gathered data from a household survey conducted among 1587 Chinese rural older adults (mean age = 73.63 years). The collected data was analyzed using SPSS version 23.0 software (IBM, New York, USA) and the PROCESS macro version 4.0 program. The findings indicated a significant correlation between sleep quality, ADL, depression, loneliness and HRQOL. ADL and depression exhibited a chain mediation effect on the relationship between sleep quality and HRQOL. Notably, the association between sleep quality and HRQOL was entirely mediated by ADL and depression. Additionally, loneliness acted as a moderator in the relationship between ADL and HRQOL. The findings of this study suggest that interventions focusing on sleep quality should prioritize strategies for enhancing older adults' ADL and depression as integral components of promoting older adults' HRQOL.


Assuntos
Atividades Cotidianas , Depressão , Qualidade de Vida , Qualidade do Sono , Humanos , Idoso , Depressão/psicologia , Masculino , Feminino , Idoso de 80 Anos ou mais , China/epidemiologia , Solidão/psicologia , Pessoa de Meia-Idade , População Rural , Inquéritos e Questionários
18.
Expert Rev Endocrinol Metab ; 19(4): 367-375, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38842362

RESUMO

INTRODUCTION: Acromegaly is a rare endocrine disorder usually caused by a benign growth hormone‒secreting pituitary adenoma. Surgical adenoma resection is typically the first line of treatment, and medical therapy is used for patients with persistent disease following surgery, for adenoma recurrence, or for patients ineligible for, or declining, surgery. Approved somatostatin receptor ligands (SRLs) have been limited to injectable options, until recently. Oral octreotide capsules (OOC) are the first approved oral SRL for patients with acromegaly. AREAS COVERED: We review published reports and provide case study examples demonstrating practical considerations on the use of OOC. Using two hypothetical case scenarios, we discuss current treatment patterns, breakthrough symptoms and quality of life (QoL), efficacy of SRLs, OOC dose titration, evaluation of OOC treatment response, and incidence and management of adverse events. EXPERT OPINION: OOC are an option for patients with acromegaly including those who experience breakthrough symptoms, who have preference for oral therapies, or other reasons for declining injectable SRLs. OOC have been associated with improved patient-reported QoL measures compared with those reported for lanreotide and octreotide. Continued real-world experience will determine whether OOC, alone or in combination with other therapies, provides further advantages over current injectable acromegaly treatments.


Assuntos
Acromegalia , Antineoplásicos Hormonais , Octreotida , Qualidade de Vida , Humanos , Acromegalia/tratamento farmacológico , Octreotida/administração & dosagem , Octreotida/uso terapêutico , Octreotida/efeitos adversos , Administração Oral , Antineoplásicos Hormonais/administração & dosagem , Antineoplásicos Hormonais/uso terapêutico , Antineoplásicos Hormonais/efeitos adversos , Cápsulas , Adenoma/tratamento farmacológico , Adenoma Hipofisário Secretor de Hormônio do Crescimento/tratamento farmacológico , Ensaios Clínicos como Assunto , Resultado do Tratamento
19.
Qual Life Res ; 2024 Jun 10.
Artigo em Inglês | MEDLINE | ID: mdl-38856945

RESUMO

BACKGROUND: Research on health-related quality of life (HRQoL) trajectory patterns for people with disabilities (PwD) is scant. Understanding the HRQoL trajectory patterns for PwDs and investigating their relationship with disability types and socioeconomic factors can have important implications for Australia's welfare policy. METHODS: We analysed data from waves 11 to 21 of the Household, Income and Labour Dynamics in Australia (HILDA) survey of respondents aged 15 + years of the PwDs. The analytic sample consists of 3724 self-reported disabled individuals and 34,539 observations in total. The SF-6D utility score is our HRQoL measure. Group-based trajectory modelling was utilised to identify trajectory groups, and multinomial logistic regression was employed to determine the baseline factors associated with trajectory group membership. RESULTS: The study identified four distinct types of HRQoL trajectories (high, moderate improving, moderate deteriorating and low HRQoL trajectories). Psychosocial disability types followed by physical disability types had a high Relative Risk Ratio (RRR) in the low group compared with high trajectory group membership of PwDs (psychosocial: 6.090, physical: 3.524). Similar, results followed for the moderate improving group albeit with lower RRR (psychosocial: 2.868, Physical: 1.820). In the moderate deteriorating group, the disability types were not significant as this group has a similar profile to high group at the baseline. Compared with males, females had a higher RRR in low and moderate versus high improving HRQoL trajectories (low: 1.532, moderate improving: 1.237). Comparing the richest class to the poorest class, socioeconomic factors (income and education) predicted significantly lower exposure for the richer class to the low and medium HRQoL trajectories groups (RRR < 1). CONCLUSION: Different forms of disability, demographic and socioeconomic factors have distinct effects on the HRQoL trajectories of disabled individuals. Healthcare and economic resource efficiency might be improved with targeted government policy interventions based on disability trajectories.

20.
Artigo em Inglês | MEDLINE | ID: mdl-38878038

RESUMO

INTRODUCTION: This hospital-based retrospective matched cohort study explored the association between preterm birth (PB) and health-related quality of life (HRQoL) in preschool children. METHOD: PB children were matched by sex and day of birth (1:2) with full-term birth (FTB) children (PB = 89, FTP = 178). The children's parent-reported HRQoL was assessed using the TNO-AZL Preschool Children Quality of Life Questionnaire. The association between PB and HRQoL was examined using conditional logistic regressions. RESULTS: PB children were mostly moderate-to-mild preterm (64%) and exhibited a lower probability of presenting an HRQoL below the median in the sleeping (OR = 0.46; 95% CI = 0.23-0.91) and behavior (OR = 0.46; 95% CI = 0.23-0.85) subscales. Conversely, this probability in communication HRQoL was higher in the PB group (OR = 1.91; 95% CI = 1.01-3.64). DISCUSSION: PB was associated to better sleeping and behavior HRQoL, but poorer communication HRQoL. These findings could imply a potential normalization of developmental outcomes in moderate-to-mild PB.

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