C doyle they go hand in hand you know its kind of

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Unformatted text preview: eeling like a lost lamb, more frightened than before the surgery.” (fear, vulnerability) !  “Even the greatest surgeon doing a wonderful job cannot begin to address the empty, alone feeling, that is always there.” (loneliness, isolation) !  “In my 10 years I have seen at least 3 people die of broken hearts because they had nowhere to turn.” (physical consequences of multiple factors) Copyright 2013 - P.C. Doyle they go hand-in-hand !  “You know, its kind of funny (laugh), but I liked to you know, ‘roll in the hay’ and did it a fair bit, and I was, you know, good at it from what I was told. It’s all so changed. I probably couldn’t pay a man to have me these days and that hurts. It’s not like I’m old and unable, but they would find me so difficult and ugly to be with.” (sexuality, attractiveness) !  “It`s tough and I don`t know if I should just quit now or quit later`.” (loss of hope) Copyright 2013 - P.C. Doyle University of California Wine Wheel Quality of Life & Distress -  Individual, self-evaluations -  Physical, psychological, social, spiritual -  Change over time Distress QoL Ultimately, distress represents the opposite of QoL From: Bornbaum, 2009, 2010 Copyright 2013 - P.C. Doyle - distress is not just a psychological issue - distress moves along a continuum to where severe depression may evolve - it may change very dramatically from one little thing - about 30% of people in the study (of 60 people) said they felt distress, but 7 people said they had suicidal thoughts Copyright 2010 - P.C. Doyle - the terms associated with the wines can be broken down or expanded - in terms of QOL, think of paint swatches (there are the general c olours (domains), but some colours are hues that have parts of 2 c olours on them) - hues of perception that are specifi c to ones assessment of their QOL 4 Added benefits of findings from QOL instruments and follow-up inquiry ! Facilitates adaptation ! Reduces distress (multi-domain) ! Fosters acceptance So, we can adjust and expand our definition: Outcome: A change in the patient’s current and future health status that can be attributed to antecedent health care BUT, also one that influences well-being and satisfaction and social validation MM 1)  Objective conditions, or 2)  Subjective experience of life BPSM 3)  Including adaptation and coping - willingness to accept and make changes Copyright 2013 - P.C. Doyle - the better that one adapts, the better their perceived QOL, but this i s diffi cult because it takes time - if you can reduce distress, QOL tends to work in a recirprical fashion Why QOL Assessments? 1. 2. 3. 4. Burden of Illness V IDEO (CBC): "The Boy in the Moon" - Walker Brown is a child with CFC, and this video is of his dad discussing his illness Monitor diseas...
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