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. Author manuscript; available in PMC: 2017 Apr 1.
Published in final edited form as: Clin Ther. 2016 Apr 1;38(4):794–810. doi: 10.1016/j.clinthera.2016.03.012

Table 3.

NSCLC Symptom Concepts Included in the NSCLC-SAQ (Through the Cognitive Interview Phase1)

NSCLC
SYMPTOM
DOMAIN1 		SYMPTOM CONCEPT EXAMPLE PATIENT LANGUAGE SUPPORTING
CONCEPT EXPRESSED DURING CONCEPT
ELICITATION INTERVIEWS
Pain and
Discomfort		 Pain in Chest
  • -

    I could feel pain in my chest

  • -

    had a lot of chest pain

  • -

    it felt like someone was stabbing a knife into your chest

  • -

    pain in my chest, my right lung, its real sensitive and sore around that area

  • -

    I have pain in the right side of my chest radiating up to my right shoulder

  • -

    pain in my chest
General Pain (non-
chest)
  • -

    I would say just general body pain

  • -

    I hurt all over, it was so bad

  • -

    it was just pain, just pain, engulfing my whole body

  • -

    pain from the top of my head to the bottom of my feet

  • -

    feeling like the time I had bad pain, sometimes I cry

  • -

    get little short pains on numerous places in my body

  • -

    I just cry because the pain is hard
Cough Cough
  • -

    It's a constant cough there all the time

  • -

    its better but I still have the cough

  • -

    little hacking kind of cough like you have to clear your throat

  • -

    only the coughing

  • -

    still had that constant cough

  • -

    if I start coughing and carrying on that’s what it's tough

  • -

    if I'm coughing I gotta wait, clear that

  • -

    it was a low level cough, but constant

  • -

    it's a dry air cough, a deeper cough

  • -

    persistent back of the throat type of a dry cough

  • -

    the cough would be so bad

  • -

    the really bad cough
Hemoptysis Coughing Up Blood2
  • -

    coughing and blood

  • -

    the coughing and the blood

  • -

    I'd cough up a little bit of blood you know

  • -

    I'm still spitting up blood

  • -

    spit up blood streaked sputum

  • -

    when I coughed up that blood, that got my attention

  • -

    I was coughing, I was coughing up blood
Dyspnea Shortness of Breath
  • -

    I had a little shortness of breath

  • -

    I can't hardly do anything without getting short winded

  • -

    I feel a little short of breath

  • -

    shortness of breath, definite shortness of breath

  • -

    the shortness of breath

  • -

    the shortness of breath hasn't gone away

  • -

    had some shortness of breath with walking

  • -

    I got the shortness of breath

  • -

    my breath got kinda short
Difficulty Breathing2
  • -

    difficulty to breathe, very tiring

  • -

    I noticed I have difficulty of breathing when I've walked a ways and I'm tired

  • -

    could go through a whole flea market breathing and walk, I can't do that (now)

  • -

    it's difficult for me to breathe

  • -

    once they see me not breathing well, whatever we're (his friends and he) doing slows down basically

  • -

    walk with my daughter, I can't keep up, I've got to stop and catch breath
Fatigue Low/Lack of Energy
  • -

    lack of energy

  • -

    I don't have the energy, that's a minus

  • -

    just do not have the energy to do your daily tasks

  • -

    just not having energy to want to do anything

  • -

    I don't have the energy

  • -

    I just have no energy

  • -

    my energy level, it's not 100%

  • -

    my energy was so low
Tire Easily/Low
Stamina
  • -

    I might get tired just coming in from the car

  • -

    I noticed that I was tired

  • -

    I would be so tired

  • -

    I'm tired, very tired after I walk a ways, I'm tired

  • -

    certain things I start doing and feel like I get a little tired

  • -

    feel tired when I was talking on the phone

  • -

    get tireder a little bit sooner that I used getting in the way of enjoying activities because you are so tired, you don't want to do anything

  • -

    I get so tired, I have to just go sit down

  • -

    I get tired a little quicker

  • -

    I get tired real quick

  • -

    just get tired real easy
Digestive
Symptoms		 Poor Appetite
  • -

    can look at food on the plate, it doesn't interest you at all

  • -

    don't have an appetite

  • -

    get up in the morning, you don't want anything to eat

  • -

    I didn't really want to anything to eat

  • -

    I had lost my appetite

  • -

    it's hard to get an appetite

  • -

    my appetite was just gone

  • -

    sometimes me appetite isn’t very good

  • -

    there was no appetite

  • -

    weak appetite

  • -

    lack of appetite

  • -

    don't have hunger for anything, don't have any urge to eat

  • -

    food repulsed me, I knew I had to eat, but I just couldn't

  • -

    I have way less appetite

  • -

    I just have no appetite, I have no interest in any food

  • -

    I really have no appetite, have to make myself eat if I'm going to
1

NSCLC = Non-Small Cell Lung Cancer

2

Although included in the initial draft of the NSCLQ-SAQ, items for “coughing up blood” and “difficulty breathing” were removed based on patient responses during the cognitive interviews, and do not appear in the current 7-item version of the NSCLC-SAQ.