To our knowledge, no comprehensive, interdisciplinary initiatives have been taken to examine the role of genetic variants on patient-reported quality-of-life outcomes. The overall objective of this paper is to describe the establishment of an international and interdisciplinary consortium, the GENEQOL Consortium, which intends to investigate the genetic disposition of patient-reported quality-of-life outcomes. We have identified five primary patient-reported quality-of-life outcomes as initial targets: negative psychological affect, positive psychological affect, self-rated physical health, pain, and fatigue. The first tangible objective of the GENEQOL Consortium is to develop a list of potential biological pathways, genes and genetic variants involved in these quality-of-life outcomes, by reviewing current genetic knowledge. The second objective is to design a research agenda to investigate and validate those genes and genetic variants of patient-reported quality-of-life outcomes, by creating large datasets. During its first meeting, the Consortium has discussed draft summary documents addressing these questions for each patient-reported quality-of-life outcome. A summary of the primary pathways and robust findings of the genetic variants involved is presented here. The research agenda outlines possible research objectives and approaches to examine these and new quality-of-life domains. Intriguing questions arising from this endeavor are discussed. Insight into the genetic versus environmental components of patient-reported quality-of-life outcomes will ultimately allow us to explore new pathways for improving patient care. If we can identify patients who are susceptible to poor quality of life, we will be able to better target specific clinical interventions to enhance their quality of life and treatment outcomes.
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http://dx.doi.org/10.1375/twin.12.3.301 | DOI Listing |
Health Qual Life Outcomes
December 2024
Gastroenterology Unit, Pediatric Department, Santa Maria University Hospital - CHLN, Academic Medical Centre of Lisbon, Lisbon, Portugal.
Objectives: This study evaluated the clinical utility of the Patient-Reported Outcomes Measurement Information System (PROMIS) by comparing it with objective clinical data and validated health-related quality of life (HRQOL) measures in pediatric Crohn's disease (CD) patients.
Study Design: Cross-sectional study. Pediatric CD patients (aged 8-17 years) were enrolled prospectively over eight months from an outpatient pediatric gastroenterology center.
Headache
December 2024
Department of Otolaryngology - Head and Neck Surgery, University of California - San Francisco School of Medicine, San Francisco, California, USA.
Background: Vestibular migraine (VM) has a wide range of clinical presentations that can have a significant negative impact on quality of life. Currently, there is no objective test available to confirm the diagnosis or measure the severity of VM. The only available tools for assessing disease severity are patient-reported outcome measures (PROMs), such as the Dizziness Handicap Inventory (DHI).
View Article and Find Full Text PDFCJC Open
December 2024
University Health Network, Toronto, Ontario, Canada.
Background: Patients with heart failure (HF) can experience a poor quality-of-life (QOL), recurring hospitalizations, and progressive disease symptoms. Patient-reported outcome measures (PROMs) integrate patients' voices into clinical care, by assessing patient symptoms, function, and QOL. In 2022, PROMs were incorporated into the electronic health record system (Epic) at a large academic hospital in Toronto, Ontario, Canada.
View Article and Find Full Text PDFWorld J Gastrointest Endosc
December 2024
Department of General, Gastroenterological and Oncological Surgery, Nicolaus Copernicus University, Toruń 87-100, Kujawsko-Pomorskie, Poland.
First of all, I would like to congratulate Vilas-Boas on an interesting publication. In this letter the authors write about very interesting topics in the management of patients with malignant gastric outlet obstruction (GOO). GOO developed in up to 20% of patients with advanced hepatopancreatobiliary disease both in benign and malignant form.
View Article and Find Full Text PDFCureus
November 2024
Urology, Hawaii Pacific Health, Honolulu, USA.
Purpose The purpose of this study is to compare patient-reported outcomes of minimally invasive treatments for lower urinary tract symptoms (LUTS) secondary to benign prostatic hyperplasia (BPH), namely, transurethral water vapor therapy (Rezum) and prostatic urethral lift (UroLift), due to the lack of direct comparison in the existing literature. Methods A retrospective single-institution study was conducted comparing Rezum and UroLift procedures performed by three surgeons between January 2019 and June 2022. The difference in American Urological Association Symptom Scores (AUA SS) was the primary outcome measure.
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