1. In Their Own Words: Quotes from Cancer Patients About Fatigue Elisabeth Piault, MA, PharmD Mapi Values ASCPRO Washington, DC October 14-16, 2007

2. Research Objective and Methodology Identify and summarize findings from qualitative researches conducted to document patient perspective of cancer-related fatigue: –Descriptors of fatigue to define patients’ condition –Experience of CRF (symptoms, consequences) Use databases including CANCERLIT® and Medline

3. Methodology Reported in Studies Reviewed 14 studies reviewed –Included Case control studies (3), longitudinal (1) –220 patients interviewed/44 healthy subjects/ 11 relatives, and 11 healthcare providers Data collection –Face-to-face interviews (11), focus group (2) and phone interviews (1) –Used semi-structured guide (11) Note: for all 6 articles that displayed the questions asked of the patients, questions included the word “fatigue” Data analysis –Content analysis (6), Grounded theory (5), and Phenomenology (3)

4. Is it Fatigue or is it Tiredness? What are the appropriate terms to use when defining fatigue or tiredness experienced by cancer patients? –Fatigue (84), Tiredness (188), Energy (42), Weakness/no strength (25), Exhausted (11), Worn-out (6), Need to rest/ready to go to bed (37), –Tired is often associated with descriptors such as “really tired,” “sick-tired,” “tired like mad,” “extremely tired.” –Patients described this tiredness as qualitatively different from tiredness experienced by healthy people ~ 450 quotes retrieved and entered in qualitative analyses software

5. What is Different about Fatigue/Tiredness in Cancer Onset “I have always pushed myself past exhaustion, I still do, but exhaustion arrives a whole lot sooner than I used to” Severity/intensity “When I was recovering from the surgery and going through the first six chemo treatments, the fatigue was so severe, I didn’t have the strength to even turn on the TV” Distress Physical “.. everything is too much effort. It is ridiculous. Just to comb your hair, I mean I haven’t got any hair, but just to put my wig on, I just couldn’t be bothered... even to get dressed is too much effort... “ Emotional “This tiredness also brings about depression, I was reduced to being dependent, incapable, …I felt incapable” Social “[fatigue] was a very isolating experience” “I saw my baby but couldn’t appreciate him. Sometimes, it was like I couldn’t be around him. I couldn’t be near him because he would cry. He would irritate me. All I wanted to do was sleep.”

6. Signs and symptoms Physical “Drained” “Walking to the bathroom makes me feel extremely tired” “I don’t have that energy I don’t have that strength to finish my whole work” “I felt all dizzy and wiped out, my knees were shaking” “I don’t sleep well. I lie awake for hours at night and in the morning” “However much I rested, I couldn’t manage to shake off my tiredness. Even if I slept 8 or 10 hours at night, I still woke up in the morning totally exhausted, as though I had run a marathon”

7. Signs and symptoms Emotional “I became a liability instead of an asset” “You feel so useless” “I ‘hit the wall’ emotionally” “It’s this anxiety, all this worry and expectation, you keep waiting for the lab test results, that makes you tired” Cognitive “Uncreative,” “Unable to focus” “I cannot go on thinking, I am too tired”, “The brain is out of function” “Intellectually, I’m finding it much more difficult to formulate my thoughts, my ideas”

8. Coping Strategies “I made no plans for three days each time I got chemo, and then after that I would be fine” “I have arrived at my own set of priorities, things that are important to me. I try not to waste mental energy on things I cannot change” “I compensate the lack of physical stimulation by intellectual stimulation. Of course, if I’m felling tired physically, I take things easy, but as soon as I’m feeling better I read, go to classes, I continue to learn. In that way I can plan my days, my time, and look forward to the future” “… accept walks as my only form of exercise” “… eating makes fatigue better”

9. Limitations Secondary analysis of publications only –did not review original interviews Limited information on interview guide –“Fatigue” was term used with patients –EORTC questionnaire or Fatigue VAS provided before interview in some studies Samples –Few patients studied (usually <25 patients/study) –Unclear if findings generalize across cancer type or treatment type (palliative vs. curative) Translation of patients’ quotes