Background
Patient-Reported Outcomes
Methods and Results
Study Title and CAM therapies involved | Study sample | Setting | Objective | Design | |
---|---|---|---|---|---|
1 |
Patient perspectives on homeopathic treatment[13] | 42 classical homeopathic patients (31 women, 11 men ages 22-73) | Wide range of homeopathic clinics | To describe the lived experience and outcomes of successful homeopathic treatment | In-depth individual patient interviews (47 interviews) |
2 |
Forgoing conventional treatment and using (a wide variety of) complementary therapies by men with prostate cancer[18] | 29 men with prostate cancer (aged 50-82) who forgo all conventional treatment in favor of alternative treatment | No specific setting: eligible men responded to recruitment posters | To examine which factors influence men with prostate cancer to decline all conventional cancer treatment, and learn about their experiences. | 27 in-depth qualitative interviews with 11 individuals. |
3 |
The impact of Healing Touch on headache[35] | 13 headache patients (10 women, 3 men; ages 25-61) who received energy medicine treatment | Specialty pain clinic @ group model HMO | To document the range of complex, multi-dimensional outcomes possible with CAM therapies; to identify concepts and language that capture an individual's explanatory model of healing | In-depth individual patient interviews (29 interviews) |
4 |
Alternative medicine (naturopathy and TCM) approaches for women with temporomandibular dysfunction (TMD)[34] | 16 women (ages 25-55) with temporomandibular dysfunction and several other health disorders (10% sample from study n = 150) | Specialty TMD clinic @ group model HMO | Explore experiences with treatments and practitioners; discuss outcomes of treatment | Individual interviews with a subset of participants in a Phase II RCT (16 interviews) |
5 |
Supporting the transformative process: experiences of cancer patients receiving integrative care[14] | 11 cancer and HIV/AIDS patients (5 men and 6 women, aged 35-70) seeking integrative care | Integrative clinics in Vancouver BC | To describe essential features of the transformative experience among people living with cancer who seek integrative care; to identify factors supporting this process | In-depth individual patient interviews (16 interviews) |
6 |
Experiences of CVD patients encountering (a wide variety of) CAM therapies[36] | 26 participants (14 male, 12 female; ages 43-80) with cardiovascular disease | Newspaper ads and flyers looking for CVD patients who had experienced CAM therapies | Explore patients' experiences of CAM therapies in relation to their experiences with heart disease | A total of 15 open-ended interviews were completed (12 individual; 3 group) |
Phase Ia: Secondary Analyses of Existing Qualitative Data Sets
Ia: Methods
Ia: Results
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. |
Female | 27 (90%) |
Male | 3 (10%) |
Race/Ethnicity
| |
White, non-Hispanic | 18 (60%) |
African American | 9 (30%) |
Asian | 1 (3%) |
Hispanic/Latino | 2 (7%) |
CAM Therapy Practiced*
| |
Massage Therapy | 7 (23%) |
Naturopathy | 4 (13%) |
Traditional Chinese Medicine | 4 (13%) |
Reiki | 2 (7%) |
Holistic Health Education | 2 (7%) |
Midwifery | 2 (7%) |
Integrative Medicine | 2 (7%) |
Meditation | 1 (3%) |
Chiropractic | 1 (3%) |
Dietician/Nutritionist | 1 (3%) |
Biomagnetic Touch | 1 (3%) |
Homeopathy | 1 (3%) |
Qi Gong | 1 (3%) |
Soul Memory Discovery | 1 (3%) |
Personal Development and Literacy | 1 (3%) |
Ho'oponopono | 1 (3%) |
Number of CAM Therapies Practiced
| |
Mean (SD) | 2 (1.67) |
Item** | # of Applies or Best Applies (max n = 34) |
---|---|
Whole Person Negative
| |
I felt drained. (W - Phy - E) | 20 |
I was overwhelmed. (W) | 19 |
I was in pain. (W -- Phy) | 18 |
I felt unbalanced. (W) | 15 |
I was suffering (W) | 15 |
I muddled through my days. (W) | 14 |
I felt powerless. (W - Emp) | 13 |
Every day was a struggle. (W) | 13 |
I was miserable (W-A) | 12 |
I was really stuck in some parts of my life. (W) | 12 |
I felt numb. (W - Phy) | 12 |
I felt shattered. (W - A) | 11 |
I put all my energy into survival. (W - Phy)* | 11 |
I was judgmental. (W) | 10 |
I felt like I was sinking in quick sand. (W) | 10 |
I felt alone. (W - So - Sp) | 10 |
I was hanging on for dear life. (W - A) | 10 |
My life was a mess. (W) | 10 |
I was scared that my life might never get better. (W -- A) | 8 |
I felt out of control. (W - Emp) | 8 |
I felt defined by my illness. (W) | 7 |
I just kept doing the same thing over and over. (W) | 7 |
I was desperate. (W - A) | 7 |
I lost myself. (W) | 6 |
I didn't bounce back. (W) | 6 |
Nothing gave me pleasure. (W) | 5 |
There was no laughter in my life. (W - A) | 5 |
I lost trust in my body. (W - Phy) | 5 |
I was unforgiving. (W) | 5 |
I felt like I was being punished. (W - Sp) | 4 |
I was not resilient. (W) | 3 |
I had tried everything and nothing worked. (W - Phy) | 2 |
Whole Person Positive
| |
I am on a path towards health and wellness. (W -Phy) | 22 |
My life has meaning. (W) | 20 |
I take life's obstacles in stride. (W) | 20 |
I am forgiving. (W) | 20 |
I am able to forgive. (W) | 20 |
I feel alive. (W - E) | 19 |
I am able to let go. (W) | 19 |
I am resilient. (W) | 19 |
I feel empowered. (W - Emp) | 19 |
I'm trying things I never tried before. (W) | 18 |
I am awake. (W -- E) | 17 |
I am aware. (W - Cog) | 16 |
I feel vitalized. (W - E) | 15 |
I am in control of things that I can control. (W - Emp) | 15 |
My life is balanced. (W) | 14 |
I am restored. (W - E) | 14 |
I bounce back. (W) | 13 |
I trust my body. (W -- Phy) | 13 |
I'm feeling great. (W) | 13 |
I am living my life to the fullest. (W) | 13 |
I am nonjudgmental. (W) | 10 |
Life is good. (W) | 10 |
I feel complete. (W) | 9 |
Life is not a struggle. (W) | 9 |
Physical Negative
| |
I was tired/I had no energy/I was exhausted. (Phy - E) | 20 |
I was depleted. (Phy - E) | 18 |
I didn't sleep well. (Phy) | 17 |
My senses felt dull. (Phy) | 16 |
I have had improvements in my health I did not expect. (W - Phy) | 15 |
I kept getting the same kinds of symptoms. (Phy) | 13 |
It felt like my body was breaking down. (Phy) | 12 |
My body recovered slowly. (Phy - Fxn) | 8 |
Physical Positive
| |
My body recovers quickly (Phy - Fxn) | 22 |
I am in tune with my body. (Phy) | 18 |
I am better able to carry out daily activities. (Phy - Fxn) | 18 |
My senses are vibrant. (Phy) | 16 |
I sleep well. (Phy - E) | 13 |
I do things now I hadn't been able to do before the [treatment/study] began. (Phy - Fxn) | 12 |
I wake up rested and refreshed. (Phy - E) | 11 |
I have abundant energy. (Phy - E) | 6 |
I don't have symptoms any more. (Phy) | 3 |
I have abundant energy to do what I want to do. (Phy - E - Fxn) | 1 |
Cognitive Negative
| |
I couldn't think clearly. (Cog) | 15 |
I was unable to focus. (Cog - W) | 13 |
I felt like nothing I could do would help. (Cog - Emp) | 7 |
Cognitive Positive
| |
I have learned new things about myself. (Cog - Sp) | 21 |
I am able to deal with life's difficulties. (Cog) | 20 |
I am better able to make decisions about my health and well-being. (Cog) | 20 |
I am focused. (Cog) | 17 |
My life is not defined by my illness. (Cog) | 15 |
Emotional/Affective Negative
| |
I was stressed. (A) | 20 |
I was scared. (A) | 18 |
I am not afraid of the future. (A) | 14 |
I was depressed. (A) | 13 |
I was anxious about the future. (A) | 11 |
I had an overwhelming sense of loss. (A) | 11 |
I was so angry. (A) | 9 |
Life was not worth living. (A) | 8 |
All I could see was what I had lost. (A) | 5 |
Emotional/Affective Positive
| |
I am able to love. (A - So) | 21 |
I laugh. (A) | 21 |
I find pleasure in life. (A) | 21 |
I am joyful. (A) | 21 |
I am happy. (A) | 19 |
I am content. (A) | 17 |
Spiritual Negative
| |
I had no hope. (Sp) | 7 |
I felt far from God. (Sp) | 6 |
I had lost my faith. (Sp) | 4 |
Spiritual Positive
| |
I am using my inner resources to heal myself. (Sp) | 21 |
I am hopeful. (Sp) | 21 |
I have faith. (Sp) | 20 |
I have hope. (Sp) | 20 |
I feel spiritual. (Sp) | 20 |
I am on a spiritual path. (Sp) | 18 |
I feel closer to God. (Sp) | 13 |
Social Negative
| |
I couldn't/wouldn't take suggestions from others. (So) | 8 |
Social Positive
| |
I feel connected. (So - Sp) | 18 |
Phase Ib: Evocative Card Sort Interviews
Ib: Methods
Age | |
---|---|
Mean (SD) | 56.04 (11.5) |
Range | 30-81 |
Gender
| |
Female | 28 (82%) |
Male | 6 (18%) |
Race/Ethnicity
| |
White, non-Hispanic | 20 (59%) |
African American/Black | 8 (24%) |
Asian | 4 (12%) |
Hispanic/Latino | 1 (3%) |
Native American/Indigenous | 1 (3%) |
Highest Level of Education
| |
Some College, Associates Degree, or Technical Training | 5 (15%) |
Four-Year College Degree | 4 (12%) |
Postgraduate Coursework or Degree | 17 (50%) |
Missing | 8 (24%) |
Reason for Using CAM Therapy
| |
Pain | 9 (26%) |
Cancer | 8 (24%) |
Psychological/Spiritual Crisis | 7 (21%) |
HIV | 3 (9%) |
Grief | 2 (6%) |
Extreme Stress and Anxiety | 2 (6%) |
Addiction | 1 (3%) |
Trauma | 1 (3%) |
Hepatitis C | 1 (3%) |
CAM Therapy Used*
| |
Acupuncture | 6 (18%) |
Meditation | 6 (18%) |
Yoga | 5 (15%) |
Chiropractic | 4 (12%) |
Integrative Medicine | 3 (9%) |
Massage Therapy | 3 (9%) |
Naturopathy | 2 (6%) |
Diet/Nutrition | 2 (6%) |
Biomagnetic Touch | 2 (6%) |
Support Groups | 2 (6%) |
Traditional Chinese Medicine | 2 (6%) |
Herbal Medicine | 2 (6%) |
Homeopathy | 1 (3%) |
Tai Chi | 1 (3%) |
Number of CAM Therapies Used
| |
Mean (SD) | 1.74 (.994) |
Ib: Results -- Qualitative analysis
Ib: Results -- Quantitative analysis
Phase Ic: Developing draft instrument format
Measuring change
The development of a response set format
Creating and choosing word pairs for draft instrument
Domain Negative Item | Item Pairing and Ranking | Domain Positive Item | |
---|---|---|---|
Physical |
Not sleeping well
|
Sleeping well
| Physical |
(6)
|
(10)
| ||
Physical |
Dull senses
|
Vibrant senses
| Physical |
(7)
|
(7)
| ||
Physical |
Depleted
|
Vitalized
| Whole person |
(4)
|
(6)
| ||
Affective |
Suffering*
|
Joyful
| Affective |
--
|
(2)
| ||
Physical |
Exhausted
|
Energized
| Physical |
(3)
|
(17)
| ||
Cognitive |
Scattered*
|
Focused
| Cognitive |
--
|
(6)
| ||
Whole Person |
Powerless*
|
Empowered
| Whole person |
--
|
(4)
| ||
Spiritual |
Hopeless
|
Hopeful
| Spiritual |
(16)
|
(2)
| ||
Whole person |
Unforgiving
|
Forgiving
| Whole person |
(18)
|
(3)
| ||
Social |
Isolated*
|
Connected
| Social |
--
|
(5)
| ||
Whole person |
Life has no meaning*
|
Life has meaning
| Whole person |
--
|
(3)
| ||
Spiritual |
Have no faith
|
Have faith
| Spiritual |
--
|
(3)
| ||
Whole person |
Overwhelmed
|
Resilient
| Whole person |
(4)
|
(4)
| ||
Affective |
Closed-hearted
|
Open hearted**
| Affective |
--
|
(2)
| ||
Whole person |
Broken
|
Healed
| Spiritual |
--
|
(2)
| ||
Whole person |
Defined by my illness or problems
|
Not Defined by my illness or problems
| Cognitive |
(16)
|
(8)
| ||
Spiritual |
Not on a spiritual path
|
On a spiritual path
| Spiritual |
--
|
(5)
| ||
Physical |
My body does not recover quickly
|
My body recovers quickly
| Physical |
(15)
|
(1)
|
Instrument layout
"B" is for where you were before <insert event here> began. "N" is for where you are now.
Place a "B" and an "N" based on how you see things now. | ||
---|---|---|
Not sleeping well | _________________________________________ | Sleeping well |
Dull senses | _________________________________________ | Vibrant Senses |