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  • Sprangers, MAG, et al. (author)
  • The establishment of the GENEQOL consortium to investigate the genetic disposition of patient-reported quality-of-life outcomes
  • 2009
  • In: Twin research and human genetics : the official journal of the International Society for Twin Studies. - : Cambridge University Press (CUP). - 1832-4274. ; 12:3, s. 301-311
  • Journal article (peer-reviewed)abstract
    • 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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  • Haugdahl, H. S., et al. (author)
  • The breath of life. Patients' experiences of breathing during and after mechanical ventilation
  • 2017
  • In: Intensive and Critical Care Nursing. - : Elsevier BV. - 0964-3397. ; 40, s. 85-93
  • Journal article (peer-reviewed)abstract
    • Introduction: Breathlessness is a prevalent and distressing symptom in intensive care, underestimated by nurses and physicians. Therefore, to develop a more comprehensive understanding of this problem, the study had two aims: to compare patients' self-reported scores of breathlessness obtained during mechanical ventilation (MV) with experiences of breathlessness later recalled by patients and: to explore the lived experience of breathing during and after MV. Method: A qualitatively driven sequential mixed method design combining prospective observational breathlessness data at the end of a spontaneous breathing trial (SBT) and follow up data from 11 post discharge interviews. Findings: Four out of six patients who reported breathlessness at the end of an SBT did not remember being breathless in retrospect. Experiences of breathing intertwined with the whole illness experience and were described in four themes: existential threat; the tough time; an amorphous and boundless body and getting through. Conclusion: Breathing was not always a clearly separate experience, but intertwined with the whole illness experience. This may explain the poor correspondence between patients' and clinicians assessments of breathlessness. The results suggest patients' own reports of breathing should form part of nursing interventions and follow-up to support patients' quest for meaning. (C) 2017 Elsevier Ltd. All rights reserved.
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