NIH CLINICAL CENTER GRAND ROUNDS
Episode 2009-016
Time: 1:07:44
Recorded May 6, 2009

A Community-Based Health Behavior Study Exploring Complementary and Alternative Medicine Use Among Minorities with Rheumatic Diseases
Gwenyth R. Wallen, PhD, RN
Chief, Research and Practice Development Service, Nursing and Patient Care Services, CC

Migdalia V. Rivera-Goba, EdD, RN
Senior Nurse Specialist for Research, Research and Practice Development Service, Nursing and Patient Care Services, CC

ANNOUNCER: Discussing Outstanding Science of the Past, Present and Future – this is NIH Clinical Center Grand Rounds.

(Music establishes, goes under VO)

ANNOUNCER: Greetings and welcome to NIH Clinical Center Grand Rounds. We have two speakers on today's presentation, recorded May 6, 2009. Dr. Gweneth Wallen, Chief of the Research and Practice Development Service in the Nursing and Patient Care Services Department of the NIH Clinical Center, and Migdalia Rivera-Goba, Senior Nurse Spoecialist for Research in that department will present a Community-Based Health Behavior Study Exploring Complementary and Alternative Medicine Use Among Minorities with Rheumatic Diseases

We take you to the Lipsett Ampitheater at the NIH Clinical Center in Bethesda, Maryland, where Dr. John I. Gallin, director of the Clinical Center, will introduce today's first speaker.

[ applause ]

GALLIN: Good afternoon, welcome to Clinical Center Grand Rounds.

This week is Nurse's Week, so it's more than appropriate that our two presenters today represent some of our here at the Clinical Center. I had the opportunity to participate at the beginning of the week opening ceremony, it was really fun to see the enthusiasm and excitement of our nursing, who after all the people who coined the phrase there's no other hospital like it which has been a tremendous branding sort of thing to use at every opportunity literally all around the world, so, it's fun to have this, I think the first presentation of the team of nurses at Grand Rounds at the Clinical Center.

So, our two presenters today are going to be presenting from the research and practice development service in the clinical service and patient care service, and they're going to discuss community based health behavioral study exploring complimentary and alternative medicine use among minorities with rheumatic diseases.

First we'll hear from Dr. Gwenyth Wallen, service chief, then we'll here from Dr. Migdalia Rivera Goba, senior nurse specialist for research. I'm going to tell you a little bit about each of them, then they're going to do team effort as they present.

Dr. Gwenyth Wallen recently completed the Bravewell associate fellowship associate in integrative medicine and was the first clinical nurse scientist to complete this program from the Clinical Center. The Bravewell collaborative is a community and philanthropic group committed to integrative medicine through research. Dr. Gwenyth Wallen has been a service chief since 2005 and a clinical nurse scientist focusing on health behavior and health desparities since 2001. She earned a BA in health education at the University of Maryland and she also has a master's degree in management and supervision from Central Michigan University. Her honors include membership in the Public Health Service and an award from that group as chief nurse officer award for outstanding contributions to nursing.

Dr. Migdalia Rivera Goba came to the Clinical Center as a postdoctoral fellow in nursing and patient care services in 2002 and has been in her present position since 2004.
She earned her BS in nursing at American International College in Massachusetts.
And then she went on to the University of Massachusetts for master's degree in nursing and doctor rate in education. Dr. Migdalia Rivera Goba is on the editorial board of Hispanic Health Care International and her honors include citations for outstanding commitment and the president's award from the national association of Hispanic nurses.

So now Dr. Gwenyth Wallen will get this presentation started.

...(Applause)...

WALLEN: I have to say this just to alleviate my stress this morning, but, I figure everything is uphill from now for whatever reason I decided I was going to be a patient this morning and I had a mammogram at 7:30 this morning, so I thought, after this everything is going to be great.
...(Laughing)...

So with that said, I want to begin just introducing a little bit of background on this study.
And also to say that actually since we submitted all our information Dr. Migdalia Rivera Goba was promoted to clinical nurse scientist based on some of this work and other work she's been doing, so I wanted to acknowledge that.

And we have no relevant financial relationship or commercial interest to report.

And the objectives for you all today, we're going to describe qualitative and quantitative methods for evaluating patient and community member health beliefs and behaviors related to rheumatic diseases, we're going to talk about evaluating patient outcome in minority population with rheumatic diseases, and analyze some sample data for developing a framework for formulating questions regarding individual's health care choices across multicultural populations.

What do you think of when you think of patients with rheumatic diseases? Or who do you think of? You may think of MRIs, CT scans, x rays, we may think of blood test, medication adjustments, rehabilitation care plans, but how well do we really understand what our patients are experiencing with what is more often than not a life altering chronic disease? To put you in the mind set of what we're going to be talking about today, I wanted to talk just briefly about landmark summit held in February of this year at the institute of medicine were Dr. Fineburg introduced the idea of looking at integrative medicine and the public and the health of the public. And at this summit, one of the first things that people were discussing was can we use a different name, can we say instead of integrative medicine, can we say integrative health, since it's a multidisciplinary approach to care and it focuses on health and well being in addition to disease management all of which are things that we are trying a part of our mission here at the Clinical Center.

Also, when we think of optimal health within this paradigm of integrative medicine, we think of the being of the whole person physical, psychosocial and spiritual. According to colleagues there was a suggestion that studies in the future on integrative health should include feasibility of whole system interventions describe the practitioner patient relationships and partnerships that exist. Explore patient goals and priorities towards distance of well being, the patient's sense of well being, the family and community sense of well being. Patient self care and resilience. Describe and quantify personalization of diagnostic and therapeutic measures to individual patients and exam the environmental and societal consequences of health care.

Before I let Migdalia get started I wanted to give some background on the study.
When I started here, as happens often at the Clinical Center, you begin to talk to other colleagues that have similar interests, I was working with the pain consult team looking at evaluating some of their programs, people that I met under that I was bilingual, I grew up in Latin America, they knew I was interested in Hispanic health and also people knew I was interested in integrated whole approaches to care, so I was approached by members of the NIAMS intermural team who at the time at the Cardoza clinic, Dr. Middleman and Dr. Gregory Dennis. They wanted to figure out at the Cardova clinic, and Magdalia will tell you more, what they wanted to know was are there ways to evaluate patients that were seen at the Cardoza clinic and, if there are, what are the best measures to use, and can we understand who these patients are that are coming to the clinic.

We put a tale together with (…) situations, people from the nutritionist department, the communications office, extramurally, a broad number of disciplines came together to design the study, but most importantly, the community came together with us to design the study, when we first started Dr. Lisky staid this is going to be a long road, it's a fragile partnership we have with the community, so you're going to have to start with qualitative methods and you're going to have to involve the community. And as Migdalia goes along she'll tell you about some of the experiences we had because the community actually helped us design the study, they made the recommendations of how should we run focus groups? What would the patients down there trust? How should we behave when we're in the community doing research? So that said you now have the context of the study and I'm going to hand it over to Migdalia.

GOBA: I don't have quite as cool introduction as Gwen did to what she was doing at 7:30. I will say good morning to you all and say I'm really excited about being here, as I was sitting here, I was recalling the introduction that Dr. Allen gave, it made me think about the beauty of NIH and how you bring people in in training positions, you provide them opportunities and opportunities continue so that one day we're here talking at grand rounds about what's been done here for our patients.

So, as Gwen said, I will talk to you. I come with background on qualitative methods and it's in many ways the way I think and one of the things that we hope to show here is the importance of qualitative research and through that share with you the participants perspective and how that will help our practice. So for those of you that don't know much about the clinic, the National Institute of Arthritis and Musculoskeletal and Skin Diseases, NIAMS, is located in the heart of a multicultural community in Washington D.C.’s community health partnership is located within the upper Cardozo health management company and is operated by the Unity Health Care Incorporated. It is a community based health management company, which provides health care to the uninsured and the underinsured in the DC area. All participants of the community health center are enrolled many the natural history study of Rheumatic Disease in minorities which is designed to gather information on prevalence, severity and outcomes of disease.
Previously headed by Dr. Barbara Middleman and Dr. Gregory Dennis, it is now lead by Dr. Gruley. And this slide will show you who makes up the team of the people all involved in making sure that this research was conducted.

Some of you may know that for African Americans, rheumatic diseases are the leading cause of activity limitations. These arthritis-related limitations are also more frequent among Hispanics than non Hispanic whites. Patients with decreased functional ability, chronic pain and depression pay seek integrative approaches to improve their well being.
And, we'll be giving you a little bit more specific examples of this. Clinicians from various disciplines joined forces to explore potential measures to evaluate outcomes based on specific health behaviors and practices including the use of (…) and alternative medicine modalities.

The study we're about to present is a mixed method study examining health behaviors among patients enrolled in the natural history of rheumatic disease in minority communities at the CHC over six month period. Community based participatory research methods were used to obtain guidance regarding the community strength and resources so that research and practice could be integrated through community partnerships and as again stated if you really want to work in the community, you have to involve them, often times when we try to do community work we think that as the experts in the science and the research and the variety of areas that we know best what community folks need. Reality we don't know, but what we know best is what we know if we listen to them then we're able to take what they said and actually create a study that actually meets their needs, not our needs.

So what we did was formative work with a three phase study which included town meetings, in essence it was just that, talking to people, sharing the ideas and seeing what they had to say with the established community health partnership known as the health partnership program. Represented by area grass roots organizations senior centers, existing community clinics and faith based organizations. You can see that the work that NIAMS did up front get all the different people that represented the wealth of knowledge within a community really was really helpful for us to be able to serve the community.
Phase one includes patient cog cognitive interviews, phase two was focus groups and community health partnerships and participants attitudes regarding research in their community. And that's what we have to remember, it's their community.

And explore concepts such as trust, disease burden and barriers are facilitated for implementing the phase 3 quantitative phase of the study. I will be focusing on phase one and phase two, but I would like to share with you the research questions that guided the study.

What are the best methods and measures for assessing the health beliefs and behaviors among minorities with rheumatic disease? Did minorities with rheumatic disease identify specific health belief and practices regarding their diseases? Is there a relationship between patient health and racial background, age, perceived social support, length of time in the United States and level of acculturation and the decision to use complimentary and alternative medicine? Is there a change in mood, pain intensity and functional status in patients who are receiving care at the NIAMS community center over six month period? What relationship exists between physical, psychosocial correlates outcome pain symptom and functionalty in minority patients are rheumatic disease?

So, in order to give you an idea of the people that we worked with, we decided to give you two case studies that are representative of the people we serve.
Ms. G is an English speaking 49 year old black from Ghana who has been in the United States for sixteen months her weight is within normal limit was a BMI of 21. Some functional disability is reported by the HTTG 1 GI and she reports no pain during the time of the interview. However, when asked to describe her last thirty days he describes it as usually a one to five on a scale of zero to ten. In addition to being seen at that time Cardoza health clinic she shares, she has used or currently uses modality from the following categories seen another practitioner, in particular I understand it was a spiritual healer Reiki master, using a special diet, minuter RALs vitamins, copper bracelet or magnets, movement in spirituality. And one of the interesting thing I'll also remember about this participant. Although she was very willing to answer any questions that we had, she also asked please shut off the tape recorder. Our goal was to have all our interviews audio taped so that we were able to transcribe verbatim and her request was not to do that because she wasn't comfortable with that. What we did was shut off the tape recorder.

Mr. E a 65 year old Hispanic male born in Ecuador, lives in the United States and has been here for 23 years he has been diagnosed with rheumatic disease, he is considered overweight based on a BMI with 25 with a degree functional capacity a one under H HQD 1 which indicates some disability. Mr. E reports a pain level of one out of ten.
And also moderate or low mood and lower than average self efficacy score.
Some of them do overlap with previous case. Vitamins, herbs supplements, rubs, lotion, movement and spirituality.

So, after receiving the initial approval to conduct study from NITBK and NIAMS IRB patient recruitment began December 9th of 2000 during the first year we enrolled fifteen subjects to complete the cognitive interviews which represented phase one of the three phase study. Phase two, which included several focus group was complete in the recruitment for the focus groups was difficult with groups ranging from only to four participants nowhere recruited into the focus group that was to include Spanish speaking lupus patients two of the seven focus groups included members of the community partnership.

In a minute I'll tell you the importance of learning from the community partnership it really did help frame many of the things that we did. Despite these low numbers and this was critical to the study with the combination of both the one on one cognitive interviews and the input of the focus group participants staff ration was met in that no new qualitative information was being generated by the last focus group.

Phase 3 of the study which included the face to face interview was 109 subjects at the first visit the Cardoza clinic six month followed by a visit that began on January 19, 2005.

So, on this slide you see a list of the different instruments that we us. The demographics one was the one that NIAMS used, we used that to gather demographic data. In particular to note that of these measurement the long face pain scale which measures people's pain level and they identify from no pain to severe pain depression scale for (…) and arthritis off efficacy scale and the questionnaire disability index, which I've mentioned a couple times already, those had a lot of psychometric testing, so we're much easier for the population that we were working with to understand the one that was we found we had to make the most changes to was inventory of complimentary and alternative medicine practices. In a little bit I'll get into that more so.

So the first phase was the cognitive interview and cognitive interview is a really interesting way comprehension in the nurse science and public health literature is a significant edge to the traditional pilots testing particularly in diverse population.
Basically you ask the question throughout the questionnaire. You ask additional questions, you may ask patients to paraphrase a question in order to see if what the question is asking is in reality rather if their interpretation of what the question is asking is really what the question is asking.

We ask different types of questions such as comprehension problems and recall problems. What does this mean to you, what do you think is being said when we ask this question? And it generated lots of interesting information. The cognitive interview was really an iterative process and I'm briefly showing this to you now. A little bit I'll go into more detail about the significance of this. It does show you an overview of how we started with one instrument early on and by the end how we had to change them in order to be able to use them in phase 3.

The interesting thing also about the quotes is that it really does show the patients did understand the concept that we were trying to share. And so in asking social support we're trying to verify what participants understand when they heard the word social support. And in this particular instance the person said to me it's all encompassing, emotionally, mentally, financially, it's just all over. Their answers reflect much of what the literature tells us, that it is all encompassing, can be emotional, that it's about meeting the basic needs about issues with activities of daily living, and actually sometimes it's about financial support.

In this particular quote, this person, I realize it's a lengthy quote you may not be able to read it clearly. She's talking about what support means to her and what it means to her is that when she asks for advice it's given to her, when she needs to talk about something she talks about it and someone else stays quite. What she needs isn't for people to always come up with solutions and tell her what to, do sometimes what she just needs is just listen to what I have to say. And she talks a little bit about her husband, who's trying to be supportive, he's trying to make jokes, he's singing and doing this, and all she wants him to do when she's in pain is be silent. She says here that all she wants people to do is say I'm here for you, what ever need it is you may have.

Functional status is interesting because these two quotes really talk about for these two particular people something that was so important to them that they what to give up because they were no longer to be able to do it. In the first example a woman has long hair and she had to cut it because she just couldn't manage it, but yet her long hair was so important to her and to have to give that up was a very painful experience to her but she had to do it, for her there was no alternative. In the second quote, this situation was interesting because this particular person really enjoyed taking baths and she was (…) the bathroom for a while. Her husband knew she was in the bathtub, after a long period of time her husband was like are you oak? “Do you need help”, and she would not let him in because she was so upset that now she was struggling with being able to take a bath, she's recalling that incident and saying this not real, this is not happening to me. But, yeah, this was happening to me, so when I got out I said, I am never get into that tub again. I don't care how good I feel because with her arthritis being in the warm water was actually very soothing to her. I don't care, I'm not going to do it, so that was my last full body bath.

And, you know, as I'm recalling these, reading these quotes I'm clearly remembering the particular situation. To the person who's in pain, we often ask, you know, on a pain of a scale of 0-10 what's your pain but for the person experiencing the pain, it's so much more than that scale, it's so much more than that number. This particular quote the person is talking about that pain is something that should never be allowed to exist in this universe.
It means depression, being unable to do things that one used to do. It means adjusting to a way of living a quality of life that you have not known prior to having this invasion in your body. And that parallels to what other people have said, I no longer can get in the bath, cut my hair, I have to cut my hair because I can't take it. It can dampen the spirit.
I always think it's interesting her last sentence, I'm going to abolish that word from the vocabulary one day. I thought that was a very powerful quote.

In this quote, this was Hispanic individual who says that being pain free, it's tranquility, happiness because I'm well, I don't feel anything. Like now, I feel well. But then it changes, if I have pain, I would feel sick. I wouldn't feel like talking or doing anything.
And actually, many of the folks they said, today we're able to talk to you because my pain at least is manageable. Depression, to be honest, this person, there are times when I feel a (…) I think that's such a powerful word that I want to do something different every day just sitting here watching television, I'd like to do something, find some distraction, go somewhere, many times I take the Metro and I go to the mall, but because of the cold weather, I haven't done it.

It's interesting what people will do, often times they use some sort of CAM in order to relieve the pain. And sometimes it works for a period of time this person that what I was know it helped me because I used it four or five times. It's a root available on the market.
So I took cat's claw and made into a tea, it was good for me because it made it disappear, disappeared for months and then it came back again.

There was discussion on what that was, you thought it was working then it wasn't.
This slide is particularly important because it gives an example of what happens when a participants or patient talks to a clinician and depending on the clinician's response whether that patient will continue talking to them. And the first case it says I even asked a physician once about homeopathic type things, he was like no, to, no. Not just one no, multiple noes. Why waste my time. So I said, okay, fine. I didn't argue with the physician. But that individual never shared with the physician either all the what other sources they were using.

I bought a (…) one day, referring to the physician, doctor I'm taking this, that's good he said, that is good for you. In contrast this patient talked about always how this person told the doctor everything he was doing. So here's that thread that I showed earlier and all most of the instruments have gone psychometric testing, I said earlier Kate Lorg and colleague out of Stanford they had not been widely used in these population. Provided a MET for investigators to determine whether the instruments were understood that they were valid in capturing relevant information and cap to confirm if these measures could be used in this population, in addition to think about methods where participants are asked to think aloud as they answer the question.

Verbal cues to explore various responses, the cognitive interview yielded suggestions for improving the questionnaires which included providing visual aids, and at early on to laminate these sheets, we're having a hard time following it with concrete examples and also by using, by the use of racially ethnicically concurrent interviewers. The other thing that people would say is, you're talking about these different devices, you don't know what they really look like. Again, they made pictures, we had pictures of them, laminated and gave them, it was a very easy visual for a person to use. People felt this is important, we want to have people that can talk to us in a language that we speak.
We want people that will be like us.

Fortunately under direction our team was very richly ethnically diverse, the intent was we would represent the community we were working with. Another interesting thing that happened was that we ended up changing some of the words because although in the instrument it would it seemed to work with the population it had been used with before, it was not working with our population. The classic example for us was under the cognitive interview ten and eleven the past people had been saying we're having a hard time understanding in Spanish what you mean by standard complimentary alternative medicine. But they weren't able to come up with a better word. And then it was during the TEPT interview that somebody said why don't you use just use Medicine Cafetera.
We changed it and from that point out everyone knew what we were talking about.
I have been talking about cognitive interviewing, an excellent source for conducting cognitive interviews is written by (…) and the citation is there if you would like him.
One of the things that happens, especially when you work with ethnically diverse groups is that this is misconception that translating is just a matter of translating you take one word and put into Spanish this particular case, and that's not true. We believe that conducted research with Spanish speakers is not simply a matter of taking a questionnaire designed for English speakers and translating it into words into Spanish. Effective translation requires knowledge of language variances and answers and translated into a questionnaire that would be culturally and linguistically to the various country of origin who's expertise included Latin culture multicultural communication, clinical research and research MET and I'm looking out at the audience I'm thinking in particular one of my colleagues and both were Hispanic, we were interviewing a Hispanic person and I kept asking – I asked this person a question and based on what I understood the word to mean I asked her another question and he said, no, no, in their country that word means that.
It was an important lesson that even though you may have Spanish speakers that you are to be really careful about country of origin because different things different words mean different things, depending on the country of origin.

The laminated items that we provided for the participants of the pictures, this was interesting, the jar and bottle opener, as I talked about earlier we used the community members, participated in into of the focus groups, we talked about what would be useful, helpful, should we provide a financial compensation to the participants, what are your ideas, they said, no, no, provide them a jar opener, provide them a pen that they can use and we did it because this is what they told us was most needed. And time and time again to see how people reacted when they opened these things. It was like such a huge thing because many of them did not have these particular items. When we talked about the CAM scale, this was the one that underwent the most dramatic changes based on the participant feedback.

The original I ICAM portion of the questionnaire was designed to capture modalities and time frames, ever currently and continually using, respond to the format confusing and difficult to answer. Consequently as the result of it, this was the original and this is what we changed it to. A very simple, yes, no, do I use it and listing what indeed is it that they use.

The second phase of the study was the focus group, and the purpose of the focus group is really to understand from them the participants what they were thinking about, what was their understanding about their disease process. We conducted focus groups, they were an hour and a half to two hours they were tape recorded, each focus group had a moderator and facilitator and everybody who participated moderator and or facilitator was trained in the process because we wanted to make sure there was consistency across all the groups. And, some of the interesting things that they said about what they thought caused arthritis was some thought that it was exposure to the elements is what brings out arthritis, not dressing properly, some of the works I've cone, I've worked in coolers freezers, sometimes you can't put a suit on and you just run in. Interestingly this other person thought I played a lot of sports when I was in school, I know for a fact that I got my arthritis when I broke my ankle, I also broke my femur and other bones doing sports when I broke my ankle the doctor said there's a 99 percent chance that I would have arthritis in the future and unfortunately I got it. He also believed it his diet caused him to get arthritis.

This person had an interesting perspective, from the little I understand it's an auto immune disease, any number of reasons like toxic chemicals. I guess the immune system is more or less a bunch of different animals that run around in the body, proteins and so forth if it isn't fed right or overstressed they can't do their job. I guess that's like a dumbed-down way of looking at it.

And, I started to read on what the perception of CAM was, I started reading that certain nutrients were good for helping the immune system, so I don't eat as good a diet as I should especially in the condition I'm in.

Somebody else thought it was (…) in the following example that was effective and in that sense what we did was we did a phase 1 which was a cognitive interview, gather lots of information, gathered information from the focus groups, learned what they thought was important, what needed to be better and then took all that information and regrouped the not regrouped, that's not the correct word, retailored the questionnaire to meet the needs of the community, so then many the third phase of the study, we're able to do the quantitative phase. So here's your complete shift again.

WALLEN: We used the cognitive interview in the focus groups, we made the adjustments as Magdalia said to the instruments we were using then we recruited 109 new patients now at the clinic. The very first visit they came in they met with us for a half hour to an hour depending on how much they wanted to talk in between the instruments, so it's hard for the IRB purposes we said a half an hour to an hour because that was really realistic.

Here's a demographic, our group is mostly female, mostly in the age 40-60 with a mean of 51.3 and the standard deviation is 13.2 years. As far as their BMI, the limitation of this during what I would consider a pilot type study, we actually did a self report, but when you're face to face with someone it's hard to tell them too far off what their BMI was. They were pretty realistic, more than half ended up in the obese category which make sense with some of the population there, it mirrors other populations at the national level and the range of the BMI was 15.4 to some of the Lupus patients were on the lower end of the BMI.

Country of origin, this was important in this study because one of the reasons that we first set out to even look at these instruments and their utility in this clinical setting is a lot of the works that (…) did is in Mexican California area and we wanted to make sure that the instruments that she was using would be able to be used in the population that we have that's mostly central American and Latin American. And then there was also, because of where the Shaw district is Cardoza there's also an African immigrant population that's growing. Hispanic, 46 reported they were Hispanic, 61 non-Hispanic. Race became an issue you'll notice under other there's 13. For the Hispanic patient once they said ethnicity they had a hard time after they told you they were Hispanic to pick a race.
Since we were guided by the LNB how to select ethnicity and race we tried a little bit to probe them and say well, if you have this category where would you pick, some still couldn't, I already told you, I'm Hispanic, so we move on.

The most frequently occurring diagnosis at the clinic out of the 109 rheumatoid arthritis, actually 11 with fibromyalgia, they were saying what they came with. Many of them came from their primary doctor at the Unity health system and so they had a diagnosis when they entered fibromyalgia, they don't say this was the diagnosis but they kept with our clinicians. They identified as just arthritis, systemic lupus, and that was just what was told to them and then repeated to us in the interviews. Patients that had more than one diagnosis, many of the patients that are seen down there are very complex and those of you that work in this clinical setting know how complex these patients are with multiple diagnosis and you see the list here of some of the examples of ones in our sample.

Descriptive statistics, what is interesting to note about these statistics if you're in this field is that they're not earth shattering, what I mean by that is that this sample looks like other samples that you might see around the country. The fact that they're minority didn't change really how they were presenting in terms of the outcome one thing that was interesting, the CESD, which is the measure of mood or depression. Mean was 18.4SHGS which is really an indicator of moderate low is a screening tool that can be used in a clinical setting. And actually, we, during the entire process, we actually had one participants that we did want to report to Dr. Austin and the IRB because she came out so high on the mood and then we did referral through the clinical setting. That's one thing I do want to point out, when you use these type of outcome measures, you have to have a system and cut off point for when you're going to refer these patients to further consultation with psychiatric liaison.

Two of the types of pain that we were looking at, the regular intake form at the clinic asks both what did they feel like over the last 30 days in terms of pain and what do they follow like right this minute. And you'll notice that the faces that we selected to be the most appropriate in this particular population was 5.2 as the mean. If you ask them over the last 30 days, if you remember back to the case study, it was similar, she had no pain, but when she was asked to average it out it was higher, so the mean is up to 7.4 when they're asked to do it over thirty day period. And self-efficacy, for those of you that don't use that construct is that sense of how much control do I have over my situation has been studied quite a bit by Kate Laruic, it's a part of self care management, the more sense of control you have, the better you'll do with intervention and self care. Self-efficacy becomes a big part of health behavior intervention.

This is a somewhat busy slide, and I'm going to try to go through it with you. And I'm actually going to do it in terms of the columns from left to right. So, these are the correlations looking at the relationship between some of the variables that we have.
BMI, pain, CSD was the mood or depression. ASCS was self-efficacy, functional performance or capacity and the ITAM was the inventory that we used for testimony.
So if, you look at this age was significantly related to mood and that older patients reported better mood or lower depressions for us. If you move on to the second column as BMI increased we saw an increase in pain, which makes sense, depression and also an increase in functional disability. All those make sense. But, what's was valuable to us is remember this was a pilot study trying to find out with our colleagues what might be good measures to use in a clinical setting so this is telling us that these measures possibly are really picking up what we would expect them to pick up because it's looking like we would normally expect to look.

If we continue on to the column on pain, increases in pain were accompanied by increases in the CESD boards which indicated a decreased mood and lower self Efficacy with less sense of control and increased scores on the HAQ DICHLT which indicated increased functional ability. So again, not earth shattering, but just confirms that this is not that they're so different down at Cardoza. It's a valuable thing for clinicians to note just because you have a population that's predominantly African American or Hispanic, it doesn't mean they're completely different, when you start to take individual cases, they're different. But when you put them together they may appear the same in a quantitative way. And actually, and then the final, how can I forget since I'm supposed to be talking about CAM. In this area the only significant relationship we saw was the count of what they reported using complimentary and alternative modalities and actually depression.
And in future studies I think that would be something interesting to get down to the fine grain on and understand what that relationship meant.

What did it mean when they were reporting more depression and use of more modalities? When we looked at social support and race? Social support was related to functionality and race? Subjects were social support reported lower functionality scores which means they reported higher functional capacity. While blacks had higher functionality scores or lower functional capacity many this sample. None of the other relationships that we found among these were significant.

We then did some regression analysis to look further at the relationship and some of the predictive values for the outcomes. Remember our outcomes were pain, functional capacity or functional performance, self-efficacy and mood. When we further conducted regressional analysis where the functional mood, pain performance were regressed individually on a set of four variables, race, age, ethnicity and social support, the model predicting pain as a measure was on a 0-10. Remember we had two. One was pain over 30 days and one was the pain right now. When you looked at the pain over the 30 days there was a significant relationship and OLS being black and Hispanic and Hispanic was significant many the model. Also significant was the model predicting functionality with not having social support. A significant predictor of higher functionality score, higher score means less functional performance.

The models predicting self-efficacy and mood were not significant though age remained a significant predictor of mood after controlling for race, ethnicity and social support.
In other words, older subjects tended to report lower depression scores for better mood.
Really in the future a little bit more because thinking intuitively about the population that we saw, some of the younger people that were there were actually still working.
One particular person was working at a nursing home. Several of the men were doing either labor jobs or heavy activity types whether that may be played into the part where age also ended upping being part of the mood, the mood issue since they were heads of households.

As far as the baseline statistical analysis for the CAM use, while both African American and Hispanics reported high CAM use, no correlations were found among the background demographic variables as measured by the inventory of complimentary alternative medicine practices, except for the significant relationship between mood and CAM which I showed on the other slide. However, when we began to group the diagnoses if we grouped them, I'm not an expert in rheumatic disease, the disclaimer for this is we sat down with Barbara Middleman thinking conceptually if you put these different diagnoses into this group could you maybe see that if there was a difference between auto immune and inflammatory pain syndrome would that make a difference to seek out some other integrated approaches to health. And lo and behold if we do use this, we find out, this is just a very simple graphic, but if you go all the way to the right you see that in the pain syndrome category, which is mostly fibromyalgia, many of them were saying they had cam use out of the total. Also with the structural and inflammatory. If you had auto immune they weren't. And that makes sense, at least it makes sense to Barbara Middleman. Some of the other clinicians Macon test those groups. I would love to have a dialogue in the future about what these categories mean.

In addition, we looked at what the categories were, I think it's important to note that they're not one of the things we take these patients are using, we have no idea what they're using. If you look at this, they're really using what you might expect in patients with rheumatic disease. Some mind body, spiritual religious context ointments and rubs, many over the counter.

This is just a slide showing, even though there wasn't any difference based on acculturation, the group that was using the most CAM is far to the left. Excuse me, is this group that spoke Spanish only they were using a lot of CAM.

And when we were many the early phases, we were asking a question why did you use CAM and when did you stop? They said when they got access to care they began phasing out some of the CAM that they were using.

Now, this is actually one of the last slides you may think, what were you evaluating you didn't do an intervention? But one of the things that the clinicians had asked me to do is use those same measures at six months even though we're not doing any intervention and tell us whether you see any changes over time. And so this does show that there was improvement in these particular patients, also if you note in the column for degrees of freedom, this is shows you that we had quite a few less patients than we started with.
And we tried just about everything. The flows helped us at the time to try to follow up with these patients but it was difficult. It may be the patients that we couldn't follow up with may have been different. According to this, mood improved, pain improved.

The one thing we think is interesting that also bears future look at is the functional status why didn't that change. If pain improved and mood improved, maybe there's more work to be done in that area of improving functional capacity. Research and clinical implication, further exploration of the cam use in patient with multi-morbidity and core morbidity.

So identifying more than one diagnosis. Exploring symptom clusters among these patients. Developing waiting on intervention to manage their depression, their pains enhances their social support. We know that does help and work on what can ameliorate the functional decline many the patients or how can we improve on their functional performance for their activity of daily living also bore out in the qualitative portion of the stud difficult then study the information needs of the patients.

What do they want to know? We found in their focus group if one person said something the other person said "where'd you get that information? And they'd give each other a web site or something like that, so what do they want to know. The office of communication of NIAMS has a lot of valuable resources, but do these patients always get what they need? And then locking at the CESD scores and the sample, there's a suggestion that there's an importance of screening Andrew teen implementation of effective interventions for depression. And then if you think of implications for the study design, we need to study attrition.

Who dropped out of these kinds of studies and why? And the results suggest that maybe shorter intervals for measuring the outcomes, but then that's something that we would discuss with the interdisciplinary team because the six months was actually suggested by them, they thought before six months they probably won't see a difference that you can attribute to care. And remember, at the Cardoza clinic, it's a natural history study, so they're getting standard therapy when they come in for specific diagnosis, and then they get referred to other studies they may be eligible for.

Then standardizing CAM tool is an important goal to pursue integrated approaches so that this could become part of an arsenal for the care of a complex patient such as those with rheumatic diseases and came out also at the Institute of Medicine summit is that there's no consensus on what should the tool look like. And we found that the tool that we got from Lee Calhanan out of UNC though it was a valuable place to start.
At least for this particular sample, it was too complex.

And a final thought this study provides potential framework regarding questions on individual east health care choices, and may offer insight into decision making models across multicultural populations. And this, if you've never been down, if you've been to Cardoza you know what this is, this is a mural that stands outside if you're coming up the metro. It was done in 2001 by some of the Latin American students down there.
It really captures a community.

Thank you so much for letting us come and share our work.

...(Applause)...

>> Okay, thank you.
GALLIN: Time for a few questions. Maybe I'll start off. Your data shows that over six month period of your study the use of CAM decreased. Do you have any sense for how much money the average patient saved by that event?

WALLEN: We actually have that data. I did not analyze it. We had a category of how much they spent. Most of them spent less than or about a hundred dollars they said.
I don't think that people quantify it as you know, as accurately as they could because by the time you put in tiger balm and glucosamine, cost is pretty impressive.

QUESTION: Thank you very much for a very interesting presentation. All of these patients had access to standard pharmacologic therapy if you will, for their conditions if prescribed by physicians in that clinic, is that a correct assumption?

WALLEN: That's my understanding.

QUESTION: So one question I have that perhaps you would consider in terms of an opportunity for future study is to see to what extent the use of complimentary and alternative medicine impacts on adherence to prescribed standard therapy, for example Rheumatic disease or other similar conditions and I saw that a significant number of patients use herbal products. As I'm sure you're aware there is potential for interactions with a variety of pharmacologic agents used in clinical medicine. So perhaps that would be an area that you would consider. I wonder if you have any information on that issue.

WALLEN: I did not present all the data that we have. We did ask a question about once you were put on to standard therapy, did you continue cam and most of the patients, whether, you know, you have to go with what self report is to say that they stopped using most of what they were using. But some said that they did, in fact, continue. And one of the things when we were at the community stage of the study the community asked us, in fact an owner of a Botanica that is in Adams Morgan said, are you trying to do away with everything? There was a whole trust issue. I think what you raised about adherence something that we do have to delve into with more specific questions that might get and other measures that might affect too.

QUESTION: Hi, this was a great talk. I have a quick question to follow up on that question. I'm interested in knowing why do you think a patient uses CAM? Is it because there is an underlying distrust in the medical system? Maybe does it have to do with the fact that they're not yet integrated and they used to use these in their own country? Or is it something that they want the use on top of the medicine? I don't know, this is for me, I want to know why do they use them? Do they think it's not enough, the regular medicine, the western medicine?

WALLEN: We have some qualitative data on that. And this study really just begins to scratch the surface of it. But some of the patients said the reason when they did use CAM was because nothing was alleviating their pain. That came up over and over again.
So, if what they had wasn't alleviating pain then they would use any compliment of integrative approaches with it. And I think it goes back to their knowledge too of CAM.
Do they know that certain herbal teas might interact? But they think it feels better and is it the herbal tea or the ceremony of sitting and drinking the tea with your family?
So there's a lot of dynamics that I think clinicians have to really think about. And one of the things that Migdalia brought up that we need to think about is opening up the discussion with your patients, giving them that avenue to discuss what they do.
And have kind of a give and take. I think many of them thought if it was dangerous would give up one for another. Doing certain exercises, some may be good for the patient, some not. Some or both maybe okay, no, ma'am not. Matter of educating, but starting as a partnership with the patient.

QUESTION: Hi, I actually have two questions. One is was your measure for acculturation language proficiency?

WALLEN: It was a proxy, there is issue was that, but what do you prefer to speak at home? What language do you think in, what do you prefer to speak with your friends.

QUESTION: The second question has to do precisely with that. Did you find out if the reason why they used more CAM, the group that spoke one hundred percent Spanish, was it because the push for CAM is more prevalent in Spanish speaking media or because of lack of access to information from scientific and medical authority or anything like that?
Did you have anything any information about that?

WALLEN: I can't make a conclusion from just this one study. Some of the open ended questions did bear that once they had access they started decreasing their use of cam.
Some of the more acculturated patients were saying, so one of the things that we could do is delve into that further many the future questions that you all are asking, my mind is just thinking of all the future things that we should be examining, which is what this kind of study is to generate hypotheses and more questions.

GALLIN: Thank you very much.

...(Applause)...

ANNOUNCER: We were pleased to present a pair of speakers on today’s edition of NIH Clinical Center Grand Rounds. Dr. Gweneth Wallen, Chief of the Research and Practice Development Service in the Nursing and Patient Care Services Department of the NIH Clinical Center, and Migdalia Rivera-Goba, Senior Nurse Spoecialist for Research in that department presented a Community-Based Health Behavior Study Exploring Complementary and Alternative Medicine Use Among Minorities with Rheumatic Diseases. You can see a closed-captioned videocast of this lecture by logging onto http://videocast.nih.gov -- click the "Past Events" link, or by clicking the "View Videocast" link for today's podcast at the Grand Rounds podcast page at www.cc.nih.gov/podcast/grandroundpodcasts.html. The NIH CLINICAL CENTER GRAND ROUNDS podcast is a presentation of the NIH Clinical Center, Office of Communications, Patient Recruitment and Public Liaison. For more information about clinical research going on every day at the NIH Clinical Center, log on to http://clinicalcenter.nih.gov. From America’s Clinical Research Hospital, this has been NIH CLINICAL CENTER GRAND ROUNDS. In Bethesda, Maryland, I’m Bill Schmalfeldt at the National Institutes of Health, an agency of the United States Department of Health and Human Services.