keyword
https://read.qxmd.com/read/38500888/health-related-quality-of-life-among-celiacs-in-portugal-a-comparison-between-general-and-specific-questionnaires
#21
JOURNAL ARTICLE
Cláudia Chaves, Renata Puppin Zandonadi, António Raposo, Eduardo Yoshio Nakano, Fernando Ramos, Priscila Farage, Edite Teixeira-Lemos
OBJECTIVE: This study aimed to compare the 36-Item Short Form Survey Instrument version 2 (SF-36-v2) (generic) and Celiac Disease Questionnaire (CDQ) (specific) questionnaires used to evaluate the quality of life (QoL) in celiac Portuguese adult individuals. METHODS: This cross-sectional study used non-probabilistic sampling based on Portuguese celiac patients who accessed the online survey in 2022. The online data collection used a self-reported instrument composed of three parts: (i) socioeconomic, health, and gluten-free diet (GFD) adherence questions; (ii) SF-36 v2 - Portuguese version (generic questionnaire) and (iii) Celiac Disease Questionnaire (CDQ) (specific questionnaire)...
2024: Frontiers in Immunology
https://read.qxmd.com/read/38500152/characteristics-associated-with-sf-36-in-alpha-1-antitrypsin-deficiency-associated-copd-a-cross-sectional-analysis
#22
JOURNAL ARTICLE
Radmila Choate, Kristen E Holm, Robert A Sandhaus, David M Mannino, Charlie Strange
BACKGROUND: Generic measures of health-related quality of life (HRQoL), such as the 36-Item Short Form Survey (SF-36), are widely used in assessing chronic conditions. These tools have an advantage over disease-specific instruments, as they allow comparisons across different health conditions and with the general population. In alpha-1 antitrypsin deficiency (AATD)-associated chronic obstructive pulmonary disease (COPD), HRQoL research remains scarce. This cross-sectional study evaluates the factors associated with HRQoL in a cohort of patients with AATD-associated COPD...
March 18, 2024: BMC Pulmonary Medicine
https://read.qxmd.com/read/38494903/a-modular-and-multi-functional-purification-strategy-that-enables-a-common-framework-for-manufacturing-scale-integrated-and-continuous-biomanufacturing
#23
JOURNAL ARTICLE
Leon P Pybus, Charles Heise, Tibor Nagy, Carmen Heeran, Terri Dover, John Raven, Junichi Kori, Graeme Burton, Hiroshi Sakuyama, Benjamin Hastings, Michelle Lyons, Shinichi Nakai, Jonathan Haigh
Biopharmaceutical manufacture is transitioning from batch to integrated and continuous biomanufacturing (ICB). The common framework for most ICB, potentially enables a global biomanufacturing ecosystem utilizing modular and multi-function manufacturing equipment. Integrating unit operation hardware and software from multiple suppliers, complex supply chains enabled by multiple customized single-use flow paths, and large volume buffer production/storage make this ICB vision difficult to achieve with commercially available manufacturing equipment...
March 18, 2024: Biotechnology Progress
https://read.qxmd.com/read/38494318/health-related-quality-of-life-following-tavi-or-cardiac-surgery-in-patients-at-intermediate-and-low-risk-a-systematic-review-and-meta-analysis
#24
REVIEW
Ahmed R Gonnah, Mohamed Abdelwahab, Rebecca Taylor, Aser Labib, Omar Masoud, Maciej Debski, Hesham Kamal Abdelaziz, David Hesketh Roberts
Recent randomised trials have shown that clinical outcomes with transcatheter aortic valve implantation (TAVI) are non-inferior to surgical aortic valve replacement (SAVR) in patients with symptomatic aortic stenosis at intermediate to low risk. Health-related quality of life (HrQoL) outcomes in these patient groups remain uncertain. A systematic search of the literature was conducted that included nine trials and 11,295 patients. Kansas City Cardiomyopathy Questionnaire (KCCQ), a heart-failure-specific measure and EuroQol-5D (EQ-5D) (a generic health status tool) changes were the primary outcomes...
November 2023: Clinical Medicine: Journal of the Royal College of Physicians of London
https://read.qxmd.com/read/38493396/therapytok-for-depression-and-anxiety-a-quantitative-content-analysis-of-high-engagement-tiktok-videos
#25
JOURNAL ARTICLE
Litty Samuel, Katelynn Kuijpers, Amy Bleakley
PURPOSE: TikTok is increasingly becoming a source of health information, peer support, and validation regarding mental health. The goal of this study was to analyze the content of TikTok videos related to depression and anxiety. METHODS: The sample included 100 videos, each with at least a million views, discussing either depression, anxiety, or both. The videos were retrieved from hashtag searches. The videos were coded for the type of mental health condition; specific content being discussed (e...
March 15, 2024: Journal of Adolescent Health
https://read.qxmd.com/read/38492346/a-generic-optimization-based-enhancement-method-for-trajectory-data-two-plus-one
#26
JOURNAL ARTICLE
Feng Zhu, Cheng Chang, Zhiheng Li, Boqi Li, Li Li
Trajectory data play a vital role in the field of traffic research such as vehicle safety, traffic flow, and intelligent vehicles. The quality of trajectory data will determine the safety effectiveness of both research and practical applications. Effectively filtering out noise and errors from trajectory data is crucial for improving data quality and further research. However, most enhancement methods only focus on the smoothness of trajectory but overlook abrupt changes. The processed trajectory still exist issues such as incomplete elimination of inconsistency and loss of driving characteristics...
March 15, 2024: Accident; Analysis and Prevention
https://read.qxmd.com/read/38490253/reliability-and-validity-of-the-turkish-translation-of-the-pedsqltm-3-0-neuromuscular-module-for-2-to-4-year-old-in-spinal-muscular-atrophy
#27
Seval Kutlutürk Yıkılmaz, Müberra Tanrıverdi, Sedat Öktem
BACKGROUND: The Pediatric Quality of Life InventoryTM Neuromuscular Module (PedsQLTM 3.0 NM) evaluates the health-related quality of life in children who are affected by neuromuscular diseases. This study's aim is to assess the adaptation of the PedsQLTM 3.0 NM Turkish version (PedsQLTM 3.0 NM-TR) for 2-4 years old in spinal muscular atrophy (SMA). METHODS: The procedure of translating the PedsQLTM 3.0 NM into Turkish was conducted in accordance with the translation methodology outlined by the PedsQLTM measurement model...
March 15, 2024: Neuropediatrics
https://read.qxmd.com/read/38489938/the-assessment-of-burden-of-colorectal-cancer-abcrc-tool-a-validity-and-reliability-study
#28
JOURNAL ARTICLE
Britt J M Thomassen, Merel L Kimman, Anne M J Somers, Rudolf W H M Ponds, Jan Willem T Dekker, Barbara L van Leiden, Geraldine R Vink, Jan Willem B de Groot, Jarno Melenhorst, Kim M M W Reynders, Christel M J Gielen, Tom H A Weerts, Martijn F Lutke Holzik, Sander M J van Kuijk, Stéphanie O Breukink, Annerika H M Gidding-Slok
INTRODUCTION: Follow-up care after treatment for colorectal cancer (CRC) is increasingly focused on health-related quality of life (HRQoL) and functional outcomes. The Assessment of Burden of ColoRectal Cancer (ABCRC)-tool is developed to measure these outcomes and support patient-oriented care. The tool comprises items assessing burden of disease and lifestyle parameters. It consists of a generic module combined with one of the three CRC specific modules. The objective of this study is to assess the construct validity and reliability of the items of the ABCRC-tool...
February 24, 2024: European Journal of Surgical Oncology
https://read.qxmd.com/read/38484760/lifetime-cost-effectiveness-analysis-osseointegrated-transfemoral-versus-socket-prosthesis-using-markov-modelling
#29
JOURNAL ARTICLE
Jeffrey D Voigt, Benjamin K Potter, Jason Souza, Jonathan Forsberg, Danielle Melton, Joseph R Hsu, Benjamin Wilke
AIMS: Prior cost-effectiveness analyses on osseointegrated prosthesis for transfemoral unilateral amputees have analyzed outcomes in non-USA countries using generic quality of life instruments, which may not be appropriate when evaluating disease-specific quality of life. These prior analyses have also focused only on patients who had failed a socket-based prosthesis. The aim of the current study is to use a disease-specific quality of life instrument, which can more accurately reflect a patient's quality of life with this condition in order to evaluate cost-effectiveness, examining both treatment-naïve and socket refractory patients...
March 15, 2024: Bone & joint open
https://read.qxmd.com/read/38472717/measuring-health-related-quality-of-life-in-children-with-suspected-genetic-conditions-validation-of-the-pedsql-proxy-report-versions
#30
JOURNAL ARTICLE
Hadley Stevens Smith, Michael Leo, Katrina Goddard, Kristin Muessig, Frank Angelo, Sara Knight, Simon Outram, Nicole R Kelly, Christine Rini
PURPOSE: Measuring health-related quality of life (HRQoL) of children with suspected genetic conditions is important for understanding the effect of interventions such as genomic sequencing (GS). The Pediatric Quality of Life Inventory (PedsQL) is a widely used generic measure of HRQoL in pediatric patients, but its psychometric properties have not yet been evaluated in children undergoing diagnostic GS. METHODS: In this cross-sectional study, we surveyed caregivers at the time of their child's enrollment into GS research studies as part of the Clinical Sequencing Evidence Generating Research (CSER) consortium...
March 12, 2024: Quality of Life Research
https://read.qxmd.com/read/38472547/incidence-of-low-anterior-resection-syndrome-and-its-association-with-the-quality-of-life-in-patients-with-lower-rectal-tumors
#31
JOURNAL ARTICLE
Yuko Homma, Toshiki Mimura, Koji Koinuma, Hisanaga Horie, Naohiro Sata
PURPOSE: Low anterior resection syndrome (LARS) causes devastating symptoms and impairs the quality of life (QOL). This study investigated the incidence and risk factors of LARS and their association with the QOL in patients with lower rectal tumors. METHODS: Patients who underwent anus-preserving surgery for lower rectal tumors between 2014 and 2019 and who had anal defecation between 2020 and 2021 were surveyed. The LARS score measured severity, and the QOL was evaluated using the Japanese version of the Fecal Incontinence Quality-of-Life Scale (JFIQL)...
March 12, 2024: Surgery Today
https://read.qxmd.com/read/38470634/a-cross-sectional-multicentric-disease-specific-health-related-quality-of-life-study-in-greek-transfusion-dependent-thalassemia-patients
#32
JOURNAL ARTICLE
Philippos Klonizakis, Noémi Roy, Ioanna Papatsouma, Maria Mainou, Ioanna Christodoulou, Despina Pantelidou, Smaro Kokkota, Michael Diamantidis, Alexandra Kourakli, Vasileios Lazaris, Dimitrios Andriopoulos, Apostolos Tsapas, Robert J Klaassen, Efthymia Vlachaki
The assessment of health-related quality of life (HRQoL) in thalassemia offers a holistic approach to the disease and facilitates better communication between physicians and patients. This study aimed to evaluate the HRQoL of transfusion-dependent thalassemia (TDT) patients in Greece. This was a multicentric, cross-sectional study conducted in 2017 involving 283 adult TDT patients. All participants completed a set of two QoL questionnaires, the generic SF-36v2 and the disease-specific TranQol. Demographic and clinical characteristics were used to predefine patient subgroups...
February 22, 2024: Healthcare (Basel, Switzerland)
https://read.qxmd.com/read/38468403/health-related-quality-of-life-for-pediatric-patients-with-end-stage-kidney-disease-a-systematic-review-and-meta-analysis-of-the-pediatric-quality-of-life-inventory-pedsql
#33
JOURNAL ARTICLE
Kush Doshi, Rupesh Raina, Kar Hui Ng, Vera Koch, Girish C Bhatt, Arwa Nada, Brian Foresi, Sibee Sambandam Kamalakkannan, Mignon McCulloch, Sidharth Sethi, Maria Díaz-González de Ferris
INTRODUCTION: Health-related quality of life (HRQoL) studies demonstrate the impact of end-stage renal disease (ESRD) on the physical and psychosocial development of children. While several instruments are used to measure HRQoL, few have standardized domains specific to pediatric ESRD. This review examines current evidence on self and proxy-reported HRQoL among pediatric patients with ESRD, based on the Pediatric Quality of Life Inventory (PedsQL) questionnaires. METHODS: Following PRISMA guidelines, we conducted a systematic review and meta-analysis on HRQoL using the PedsQL 4...
March 11, 2024: Hemodialysis International
https://read.qxmd.com/read/38468272/equity-in-family-planning-policies-and-programs-in-uganda-conceptualization-dimensions-and-implementation-constraints
#34
JOURNAL ARTICLE
Noel Namuhani, Rhoda K Wanyenze, Suzanne N Kiwanuka, Joseph K B Matovu, Fredrick E Makumbi
BACKGROUND: Equity is at the core and a fundamental principle of achieving the family planning (FP) 2030 Agenda. However, the conceptualization, definition, and measurement of equity remain inconsistent and unclear in many FP programs and policies. This paper aims to document the conceptualization, dimensions and implementation constraints of equity in FP policies and programs in Uganda. METHODS: A review of Ugandan literature and key informant interviews with 25 key stakeholders on equity in FP was undertaken between April and July 2020...
March 11, 2024: International Journal for Equity in Health
https://read.qxmd.com/read/38467188/psychometric-properties-of-the-eq-5d-y-5l-for-children-with-intellectual-disability
#35
JOURNAL ARTICLE
Jenny Downs, Richard Norman, Brendan Mulhern, Peter Jacoby, Dinah Reddihough, Catherine S Choong, Amy Finlay-Jones, A Marie Blackmore
OBJECTIVES: The EQ-5D-Y-5L is a generic preference-based measure of health-related quality of life (HRQoL) for children. This study aimed to describe the distributional properties, test-retest reliability, and convergent validity of the EQ-5D-Y-5L in children with intellectual disability (ID). METHODS: Caregivers of children with ID (aged 4 to 18 years) completed an online survey including a proxy-report EQ-5D-Y-5L, the Quality of life Inventory-Disability (QI-Disability), and disability-appropriate measures corresponding to the EQ-5D dimensions: mobility (MO), self-care (SC), usual activities (UA), pain/discomfort (PD), and worry/sadness/unhappiness (WSU)...
March 9, 2024: Value in Health: the Journal of the International Society for Pharmacoeconomics and Outcomes Research
https://read.qxmd.com/read/38465758/-not-available
#36
JOURNAL ARTICLE
Asma Kefi, Wiem Helali, Khaoula Ben Abdelghani, Mounira El Euch, Cyrine Sassi, Sami Turki, Ezzeddine Abderrahim
INTRODUCTION: Sarcoidosis is a systemic granulomatosis that can be associated with large-scale physical and mental disability, affecting the health related quality-of-life (HRQoL) of patients. AIM: To evaluate the HRQoL of tunisian patients with sarcoidosis and to identify the factors that influence it. METHODS: We conducted an analytical, cross-sectional study collecting 31 patients with sarcoidosis according to the ATS/ERS/WASOG criteria...
October 5, 2023: La Tunisie Médicale
https://read.qxmd.com/read/38463371/efficacy-of-transjugular-intrahepatic-portosystemic-shunts-in-treating-cirrhotic-esophageal-gastric-variceal-bleeding
#37
JOURNAL ARTICLE
Xiao-Gang Hu, Jian-Ji Dai, Jun Lu, Gang Li, Jia-Min Wang, Yi Deng, Rui Feng, Kai-Ping Lu
BACKGROUND: Esophageal-gastric variceal bleeding (EGVB) represents a severe complication among patients with cirrhosis and often culminates in fatal outcomes. Interventional therapy, a rapidly developing treatment modality over the past few years, has found widespread application in clinical practice due to its minimally invasive characteristics. However, whether transjugular intrahepatic portosystemic shunt (TIPS) treatment has an impact on patient prognosis remains controversial. AIM: To probing the efficacy of TIPS for treating cirrhotic EGVB and its influence on the prognosis of patients afflicted by this disease...
February 27, 2024: World Journal of Gastrointestinal Surgery
https://read.qxmd.com/read/38462823/effect-of-etranacogene-dezaparvovec-on-quality-of-life-for-severe-and-moderately-severe-haemophilia-b-participants-results-from-the-phase-iii-hope-b-trial-2-years-after-gene-therapy
#38
JOURNAL ARTICLE
Robbin Itzler, Tyler W Buckner, Frank W G Leebeek, Joel Miller, Michael Recht, Douglass Drelich, Paul E Monahan, Steven W Pipe
INTRODUCTION: For people with haemophilia B (PwHB), bleeding may occur despite prophylaxis, negatively affecting health-related quality of life (HRQoL). The pivotal phase 3 HOPE-B trial investigating the adeno-associated virus gene transfer product, etranacogene dezaparvovec (EDZ), demonstrated sustained factor IX (FIX) activity and bleed protection in PwHB with baseline FIX levels ≤2%. AIM: Assess how EDZ affects HRQoL in HOPE-B trial participants. METHODS: HRQoL was evaluated using generic and disease-specific patient reported outcomes (PROs) including the EQ-5D-5L and the Hem-A-QoL questionnaires...
March 10, 2024: Haemophilia: the Official Journal of the World Federation of Hemophilia
https://read.qxmd.com/read/38462582/health-related-quality-of-life-measures-provide-information-on-the-contributors-components-and-consequences-of-frailty-in-hiv-a-systematic-mapping-review
#39
REVIEW
Mehmet Inceer, Nancy Mayo
PURPOSE: Frailty in HIV is extensively explored in epidemiological and clinical studies; it is infrequently assessed as an outcome in routine care. The focus on health-related quality of life (HRQL) measures in HIV presents a unique opportunity to understand frailty at a larger scale. The objective was to identify the extent to which generic and HIV-related HRQL measures capture information relevant to frailty. METHODS: A systematic mapping review using directed and summative content analyses was conducted...
March 10, 2024: Quality of Life Research
https://read.qxmd.com/read/38461859/first-knee-for-pain-and-function-versus-second-knee-for-quality-of-life
#40
JOURNAL ARTICLE
Adriane M Lewin, Kara Cashman, Dylan Harries, Ilana N Ackerman, Justine M Naylor, Ian A Harris
AIMS: The aim of this study was to describe and compare joint-specific and generic health-related quality of life outcomes of the first versus second knee in patients undergoing staged bilateral total knee arthroplasty (BTKA) for osteoarthritis. METHODS: This retrospective cohort study used Australian national arthroplasty registry data from January 2013 to January 2021 to identify participants who underwent elective staged BTKA with six to 24 months between procedures...
March 11, 2024: Bone & joint open
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