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Table 2 Outcome domains, representative quotations, and associated simplified item content for components of change.

From: Developing a patient-centered outcome measure for complementary and alternative medicine therapies I: defining content and format

Outcome domains

Quotations

(Examples of metaphorical expressions)

Items (for questionnaire)

Physical

"I would just take Ibuprofen because it would be so painful. You would have to go to work and stuff. When I first had it I couldn't even go to work." (4)

"A big part of it is just feeling so exhausted and tired and just like not, you know I'm fairly able to function but I'm like sitting there at work. I'm functioning but I'm not focusing. My mind isn't clear and... [Talks to kids in background]. Like I'll be, just my inner energy, that's the word. My energy has just dissipated. You know, like I'll be in bed, by the time I get home I'll be in bed. I'll sleep. I'll wake up exhausted. I'm just, I just feel drained." (1)

"It's like my inside furnace is working better for me. Not like when I was healthy, it's a totally different furnace. I had to rebuild it; the old one broke" (3)

"I've just learned to pick up on signals that I know when I'm completely in synch and I'm able to handle the stress load, which is not going to change for me any time soon." (5)

"I'm going to do very well at this. I'm going to amaze the doctor with my speed of healing and my range of motion or my strength....he called me impressive." (6)

I was in pain.

I felt drained.

I was tired/I had no energy/I was exhausted.

I felt depleted.

I didn't sleep well.

I am in tune with my body.

My body recovers quickly.

Social

"It got to be very isolating and very lonely. I cried a lot. Always. I always cried a lot over nothing, I'd just all of a sudden start crying for no reason. That whole feeling of worthlessness, you know, and not being able to have healthy relationships with people because I was so, I didn't feel like I was deserving of that. Very lonely. Just kind of like everyone would be better off without me and always thinking that way and always thinking about leaving or running away." (1)

"This has been a phenomenal thing for me. This was a need that became more in focus. I had an overwhelming desire to help people with this gift that had manifested in me, that drew me to be more open with people." (3)

I felt alone.

I feel connected.

Psychological -- Cognitive

"It's very hard to, um, sort of live life normally, because you're going to blood tests, you're going to counseling, first 6 months you're in a fog, um, my work productivity went down by 60%. Most days, I'd just sit looking out the window surfing the net, or if I had time, I couldn't really focus too much." (5)

"Part of me that was so deep that I couldn't even think...it wasn't a thought, it was just felt in every cell...that finally that I was seeing what I needed to see." (1)

"I would say, or people would say about me, that I'm more compassionate with myself and others. But more important with myself. I mean that cancer ridden, cancer woman. I'm gentler, I'm softer. More forgiving, um, I don't have other words to describe it."

(1)

"The internal dialogue is changing, I'm not so hard on myself, I don't beat myself up so often." (3)

"I think I learned to really like myself a lot more."

(4)

I was unable to focus.

I couldn't think clearly.

I am forgiving.

I have learned new things about myself.

I feel empowered.

Psychological --Affective

"Well, sometimes having trouble sleeping, you know, waking frequently, and just feeling unnerved more than usual, more anxious, and, of course, then if I take my blood pressure and it's up then I feel even more anxious!" (6)

"For I'd say 6 months I was in a very depressed way. Everything looked black. I'm very, as a rule, a positive person but everything looked very bleak, black and gray." (1)

"I'm happy again. I'm laughing again. It's like, wonderful." (5)

"I'm really satisfied and content." (5)

"I feel more lighthearted like I can just laugh and play instead of always being worried about stuff." (5)

I was anxious about the future.

I was depressed.

I laugh.

I am content.

I am joyful.

Spiritual

"I felt so hopeless before. I never was actively suicidal, but I, I remember not caring. Just sort of thinking, well if I could just go to sleep and never wake up, that would be better, I'm just consuming a lot of resources." (6)

"As I said before I really, really had a very, very strong sort of intuitive sense that this illness is not - it's a spiritual journey and it has been incredibly wonderful actually." (2)

"All of a sudden one day I found that there was a spiritual feeling inside. It was not religious, it was spiritual. It was a wonderful feeling. It changed my life, and I still experience it." (1)

I had no hope.

I am on a spiritual path.

I feel spiritual.

Whole person

"I was always in crisis. I was in crisis about the relationship I was in. I was in crisis because I wasn't sleeping. I was in crisis because I didn't want to eat. I was in crisis because I was eating. I was in crisis because I was losing weight. I was in crisis because I couldn't hold a job. I mean it was just, it did not matter where I looked or what I did or, yeah, it was, my life was a mess." (1)

"I was just kind of spinning my wheels, spinning my wheels and all that kind of stuff." (5)

"I just feel more grounded and I feel more complete. Not like so much a superficial thing but a deep down caring. Beyond scratching the surface." (1)

"The other life was the life before and there was no other life and I had to create a whole new life. I'm telling you it's like somebody that woke up from a coma." (5)

"I know I am prepared to handle whatever comes my way...I am more aware, of how I feel, of how to tweak this, to tweak that... to me healing is more about the spirit and freedom that comes from the reality that is within me." (1)

My life was a mess.

I just kept doing the same thing over and over.

I was really stuck in some parts of my life.

I feel more complete.

I am awake.

I am aware

I'm living my life to the fullest.

  1. *Numbers in this table correspond to the studies in Table 1.