Purpose: To understand the difficulties that happen during the quality of life (QoL) data collection in a pandemic and provide measures to overcome them.
Methods: We analyzed the recruitment and follow-up data of patients in one of our ongoing study whose aim was to collect the Adverse drug reactions and QoL (at regular intervals) in prostate cancer patients who were on docetaxel. Before the pandemic, we could enroll 31 patients in the study over four months. We analyzed the difficulties experienced by these patients and consultants in collecting QoL data during the pandemic, especially in situations with limited availability of resources and also where the patients are not technologically advanced.
Results: Due to the pandemic, we could not recruit a single new patient into the study. Complete QoL assessments were available in only two patients, and the disease progressed in five patients. QoL assessment was not possible in 19 of 31 enrolled patients. More than 44% of the enrolled patients had difficulty commuting to the hospital despite transport services to hospitals. Due to the risk of acquiring COVID19 infection during traveling to the hospital, follow-ups were affected.
Conclusion: There should be increased support for novel technologies that can successfully capture and transfer patients' QoL data to the treating consultant.
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http://dx.doi.org/10.2147/CEOR.S321638 | DOI Listing |
PLOS Digit Health
January 2025
Laboratorio Internacional de Investigación sobre el Genoma Humano, Universidad Nacional Autónoma de México, Campus Juriquilla, Blvd Juriquilla 3001, 76230 Santiago de Querétaro, México.
Higher prevalence and worst outcome have been reported among people with systemic lupus erythematosus with non-European ancestries, with both genetic and socioeconomic variables as contributing factors. In Mexico, studies assessing the inequities related to quality of life for Systemic Lupus Erythematosus patients remain sparse. This study aims to assess the inequities related to quality of life in a cohort of Mexican people with SLE.
View Article and Find Full Text PDFAdv Ther
January 2025
Cytel, Inc., Waltham, MA, USA.
Introduction: Fabry disease (FD) is a rare lysosomal storage disorder that is associated with pain and progressive damage to the renal, cardiac, and cerebrovascular systems. Enzyme replacement therapy (ERT) is one of the treatment options for FD and the most recently approved ERT agent, pegunigalsidase alfa, has shown clinical efficacy in three phase 3 clinical trials of adults with FD: BALANCE, BRIDGE, and BRIGHT. Recent published guidelines support the mapping of health utility state data to the EuroQol-5 Dimension-3 Level (EQ-5D-3L) index to align with the preferred methodology used by the National Institute for Health and Care Excellence (NICE).
View Article and Find Full Text PDFJ Funct Morphol Kinesiol
December 2024
First Department of Orthopedic Surgery, School of Medicine, National and Kapodistrian University of Athens, Attikon University General Hospital, 12462 Athens, Greece.
: Distal femur tumor resection with limb salvage is a demanding procedure that offers hope for patients by preserving the limb rather than opting for amputation. While limb salvage can improve both physical function and psychological well-being, there's limited knowledge on how active patients remain afterward and how their Quality of Life (QoL) is affected, especially regarding physical activities and sports. This study investigates the quality of life of the patients through the development of motor activity, focusing on both physical and sporting activity of the above-mentioned individuals and their physical abilities to participate in activities of daily and sporting life after surgery.
View Article and Find Full Text PDFObjective: This study aimed to evaluate the health-related quality of life (HRQoL) in ankylosing spondylitis (AS) patients in the Chaoshan region and identify factors influencing the ASAS Health Index (ASAS-HI) to enhance comprehensive AS treatment strategies.
Methods: A survey of ASAS-HI was conducted on 82 AS patients from the rheumatology outpatient department of the First Affiliated Hospital of Shantou University Medical College. The Bath Ankylosing Spondylitis Global Score (BAS-G) assessed overall health status, the Ankylosing Spondylitis Quality of Life Questionnaire (AS-QOL) evaluated quality of life, the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) measured disease activity, and the Bath Ankylosing Spondylitis Functional Index (BASFI) assessed functional difficulties.
Int Arch Otorhinolaryngol
January 2025
Research Unit for ORL - Head and Neck Surgery and Audiology, Odense University Hospital, Odense, Denmark.
The Nijmegen cochlear implant questionnaire (NCIQ) is a quantifiable self-assessment health-related quality of life (HRQoL) tool used internationally to determine quality of life (QoL) in cochlear implant (CI) users and to evaluate the implant's subjective benefits. This study aimed to validate the Danish version of the questionnaire (DA-NCIQ) with a test-retest including 60 participants (30 CI users and 30 CI candidates). The intraclass correlation coefficients (ICC) were calculated to evaluate the temporal stability of the participants' answers and the internal consistency of the questionnaire domains was determined using the Cronbach alpha in order to compare these results with the NCIQ's other language versions.
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