Paula Trief 2018 Transcript

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Steve Freed: This Steve Freed and we’re here at the American Diabetes Association 78th Scientific Sessions. And we have a very special guest: it’s Paula Trief, PhD. And tell us a little bit about your practice, a little bit about what you do.

Paula Trief: So I’m a clinical health psychologist. I’m at SUNY Upstate Medical University which is in Syracuse New York. And I primarily at this point — I have had a pretty extensive practice, with all kinds of patients but also a little specialty of working with diabetes patients — but primarily at this point I do behavioral diabetes research, so looking at psychological factors that affect how patients with diabetes manage their diabetes and cope with their outcomes, and also developing interventions to help patients with diabetes do better.

Steve Freed: I know you presented here at ADA. How was the turnout for your presentation?

Paula Trief: It was really good. It was the Richard Rubin award which is a really prestigious award in the psychosocial world here. And it was given to Dr. Tim Wysocki who is amazing so, they gave him the award, he gave a really good talk and then there were four panelists all talking very practically about ways to intervene with patients with diabetes, kind of quickly or effectively, but it was a very practical presentation not so much research focused.

Steve Freed: So, as far as the practical points that you wanted, people tended to take away — which is a good sign of presenters, that people use your information rather than write it down and forget about it — what would you like them to walk away with?

Paula Trief:  Well first I’d talk just about the importance of recognizing that, my focus has been partners and patients in diabetes, so couples, the important role they play and they’re going to play whether we work with them or not; the partner relationship is really unique. It’s emotionally intense, it’s intimate relationship, you can kind of let down your defenses and be yourself, it persists over time. It’s committed and patients and partners have talked about it, and other people coined this phrase, “shared social realities,” meaning that they have their attitudes, their beliefs their expectations about their disease and about the health care system. And they’re going to probably have some of that be very similar because people seek out people like themselves, but they’re living there; the effect of one is going to have the effect on the other essentially so we know that’s true. And that really led to the work that I did which is a partner intervention, couples interventions. So I want them to recognize that, I guess that was the main, one main thing.

And. I kind of tried to summarize the literature but basically said, these are some things that partners really should do we think, and these are some things partners really probably should avoid doing. But we also recognize that it’s a very very fine line. And it’s a tough road to walk for a partner. So the things that they should do are the obvious things to be supportive in some way, like help in terms of supporting the patient making behavior changes, so buying healthy foods or exercising together or reminding the person about taking their medications. Being emotionally supportive, so thinking about recognizing that it’s really difficult to have diabetes and it’s an ongoing burden, You never get a break and there is a high level of what we call diabetes distress. So for partners to recognize that this is going to affect their patient emotionally, and also pay attention to how it affects them emotionally, because we know too that partners have their own issues; they’re very often scared, they’re worried about hypoglycemia, they’re worried about future complications, they’re worried that their partner may die early or die younger. So they have their own issues that they’re dealing with. So having them kind of recognize that. There’s some evidence that when one person changes another person changes: so if I start exercising maybe my partner will start to exercise, so they can support each other by modeling good behavior.

So there’s lots of things partners can do and we think kind of overall they need to recognize that the disease is the patient’s disease and support the patients. It’s called autonomy support: support the patient’s sense of look, this is your disease, not mine; I’m here to help you, I’m here to try to make things better and make things easier, but it’s yours. You make the decisions, you do what you can; and that’s hard. It’s hard when you’re worried that the person is not going to take care of themselves.

Steve Freed: The title of your presentation was…

Paula Trief:  “You’re Not My Parent, I’m Not Your Child,” something like that.

Steve Freed: So what is partnership relationships if you’re not my parent  or not my child?

Paula Trief:  It’s a partnership. Ideally it’s a collaborative relationship, so we talk about communal coping so learning saying we’re going to deal with this together, we’re going to work together to figure out how to manage your diabetes, how for you to be successful. If I’m your partner I’m going to think about how I can help you in that, and hopefully you’re going to think about how you can help me and you can help me manage my fears or play a role in that. So it’s really communicating well and sharing goals, mostly it’s really, honestly, it’s communication. One of the things that we did in our study was that we use what’s called a Speaker Listener technique. And in the Speaker Listener technique essentially when one partner raises a concern, something that they’re concerned about, the other person just paraphrases what they’ve said, so they say “What you said is,  what you mean is” until this person feels heard and understood. And it just slows down the whole communication process because it’s our natural tendency when our partner raises a concern to get defensive, and start saying “you shouldn’t be thinking that way,” and “you’re too sensitive,” jump in and defend yourself. The Speaker Listener technique just slows that down and says, “No no no don’t do that, just listen, just make sure that your partner feels heard, and then you get your chance.” And so then you switch roles and the other person does it.

And really, It’s surprisingly powerful. I’ve listened to a lot of the tapes in our study of people doing this. But it’s a hard position for the partner. Because what we don’t want them to do is to nag and to argue and to be like what’s called the diabetes police, hovering over the patient. We want them to be supportive, but walk this really really fine line, and it’s hard.

Steve Freed: What made you personally interested in the partnership relationship?

Paula Trief:  I think I’ve just always been interested in that. And I’m just interested in relationships and how relationships impact our well-being overall, physical as well as mental. I don’t have diabetes, no one in my family has diabetes, but I’ve certainly seen the role with other illnesses that relationships can play, and in my clinical work as a therapist,  I would see partners, couples where it was just really clear that if they didn’t figure out how to work together, they were just going to be fighting all the time and it was not only that they’d have to deal with this serious medical problem, but it would be very destructive or it was destructive to the relationship.

This one example I would say quickly, I had a couple I saw once where the husband had had a really severe heart attack and the wife had gone into kind of major hovering mode, you know, yelling at him and telling him to sit down, telling him to rest, and they came into therapy because they were just fighting all the time and very very frustrated, and the more she nagged at him the less he wanted to do what she wanted him to do of course. This is just natural too. And so then she told me she had this turning point once where, it was a very hot day. He was cleaning their pool, she saw him, he didn’t see her, and she was just ready to jump right in and start yelling at him. And she stopped herself because we had talked about that in our therapy, that she needed to back off. She stopped herself and she saw him sit down, and wipe his brow, get an iced tea. She saw him stop himself and she said that was this kind of turning point where she started to recognize that it’s his illness, he can take care of himself and she shouldn’t be putting all of her anxiety on him, because it was destroying their relationship. So that’s that fine line.

Steve Freed: Can you tell us about the work you’ve done with the Diabetes Support Project, what it is and what did you find?

Paula Trief:  So this was a couples intervention trial where we had couples where one person had type 2 diabetes in poor glycemic control, A1c greater than seven point five percent. And we compared diabetes education with the patient only — because we know that diabetes education works — to an individual intervention just the patient, which was education and then ten more sessions of what you see in most behavioral interventions, working on diet and activity and testing your blood sugar and setting goals and action plans and things like that. And then we had a couples intervention. So we did the same intervention but we had the partner there, but they weren’t just there. They were intimately involved, they were working on setting goals themselves, the whole discussion was about how they could support the patient and making changes. We used that Speaker Listener technique, we had the talk about conflict. And what we found — our main outcome was A1c, and what we found was that all of the groups actually improved significantly in A1c, which kind of said that maybe you don’t need to bring in the partner. But then when we looked at it by their baseline A1c, what we found was that the patients that had lowest third — so they had seven point five to eight point two percent [A1c] — they didn’t change in any of the groups. And the patients in the highest third, nine point two percent, they changed in all of the groups; but in that middle group, the eight point two to nine point two percent, it was only the couples intervention that changed, and they improved for a whole year, not just for the intervention. So that just supported the idea of bringing in couples. And working with them in this communal coping way we think can be effective.

And we looked at other things too. Relationship, how happy they were in their relationships. We also just recently looked at the effect on the partners and we found that the ones who were in the couples intervention were more satisfied with their relationships, had less diabetes distress themselves, so they had kind of a psychological benefit from being involved as well.

Steve Freed: And I noticed that you do things a little bit different. Why do you deliver your interventions over the telephone instead of a clinic visit?

Paula Trief:  We did that in another study that we did, which was a translation of the DPP. The issue is, I live in Syracuse. It’s a moderate sized city. People who live even in the suburbs talk about not wanting to drive into the city, even though it’s not like the city like New York. There’s a large rural population and those people just don’t get in. They don’t come in for these kinds of interventions; they might come in to see their doctors every six months or so but we’re talking about like a weekly intervention, and then you know people who are elderly, people who have disabilities, people who work — you know, if you’re doing it during clinic time, if you’re working. And I was looking to bring in couples, so it wasn’t just bringing in one person, you have to bring in two people and coordinate that. So by doing it by phone you get all those, or at least potentially all those people. We had some couples where the one person was in one city and the other person was in another city. One couple where he was a truck driver and she was a homemaker and they’d both be on the phone but they wouldn’t even be in the same environment. So we just thought that that would increase what’s called reach, you know, to give people that you can get to, that clinic visits just don’t.

Steve Freed:  You know the partner program can be very beneficial for both people. I always tell the patients that I deal with, “If you do everything I tell you, both you and your spouse, you’re going to be healthier together than 95 percent of the population out there. Give them some incentive to work together. So what are some of the things the partners can do to help the patient?

Paula Trief:  Well as I said a little earlier, first they really need to know about diabetes. We have a lot of partners, couples, where the partner really didn’t know very much and sometimes that was because the patient just didn’t want them to. They were like, “Here’s my disease. Leave me alone,” because they were so worried that they would get kind of hounded. So first we start with education; they really need to understand the disease and what’s involved, not break through some of the myths. You know like you can’t eat sugar and those kinds of things. And then we think they can support each other in terms of their behaviors. So if I wanted to do an exercise program, then you could exercise with me or make sure that you take care of the kids so I can get to the exercise program and get to the gym — just being alert to my needs and being alert to the emotional needs. So if I’m down because I have diabetes and I’m feeling depressed or frustrated, don’t add on more depressed and frustrated feelings at those times. And then as I said they could just try to change themselves. You said work together and in many cases, probably the majority of cases, even if the partner doesn’t have diabetes they also have some health issues, in our sample.

Steve Freed: You know one of the things that you mentioned especially for type 2 – for type 1 diabetes, you have to get educated. So that’s a given. But type 2s like you said, most of them are not educated. And the reason for that is that the doctors never told them they have to get educated. It makes it difficult for you so, you’re not a diabetes educator, so when you find patients that are ignorant about their diabetes, don’t know what a carbohydrate is, or portion control. You want to get them educated so what do you do?

Paula Trief:  So I’ve learned a lot about diabetes so I can give them the basics and then I usually encourage them to get an appointment with – you know there are diabetes educators but most of our patients go through our Joslin Center or even in their primary care, if they go into a primary care, they have access to those kinds of classes. So I encourage them to go together essentially. There’s a lot of information online that people can get good information online and I encourage them to get that kind of information to go to their visits. Go to the patient visit with their doctor so they can ask questions. It’s not hard to get educated if you put your mind to it I think.

Steve Freed: It’s not hard to get educated like you said, if you put the word diabetes in Google, you get 36 million hits. And most of that information is wrong. They’re trying to sell you a product to cure you.

Paula Trief:  Yes. But if you go to the ADA web site there’s tons of information.

Steve Freed: So it’s important that they know where to go. Not just to go on the Internet and Google for diabetes. You know, it makes your job a lot easier if they’re educated. So what are some things that you try to tell the patients to avoid as partners?

Paula Trief:  Well we try to tell them to avoid this kind of nagging diabetes police role, but as I said I think that is really a challenge sometimes. And what I emphasize with the patient there is to recognize that in almost all cases, assuming we’re not talking some major marital weirdness going on, in almost all the cases the reason that the partner is hovering or nagging is because they’re anxious, that they’re nervous, and the patient needs to understand that; they need to understand that it’s because they love them and they care for them and they’re concerned about them, that that’s what’s motivating them. That doesn’t mean it’s OK but that that’s what’s motivating them. And that when they feel like they’re being nagged that’s when they should talk to them about that, they have to have a discussion about how are we doing this together. Not a discussion about diabetes but a discussion about the relationship.

You know a gentleman came up to me after my talk yesterday. And he said that he does groups with patients and partners and they had this discussion in the group about how many times can a partner remind someone to do something before it’s considered nagging. And he said it was three. He said they decided in their group that you could remind someone three times. Now in my house, that would be considered nagging. But I mean two would be considered nagging so you have to know your own couple. Everybody’s very very different. We talked about about the importance, if you’re in a health care setting, you usually have a little bit of time to get to know the people; you need to think about their age and the gender of the patient, the culture they’re in; in some cultures the women have very traditional gender roles and you need to understand how that may play a role. So it’s worth spending some time getting to know that couple. And not putting some kind of ideal on them like, this is the perfect couple at managing diabetes. It’s just helping them make small changes so that they feel like they’re making progress.

Steve Freed:  This year you’re the third psychologist we’ve talked to. We’ve talked about distress, we’ve talked about emotions, we’ve talked about depression. Which basically is saying that there’s a lot involved in the mind when it comes to diabetes. It’s not like cancer where you know, you hope you’ve got a smart doctor. Even though there’s other things you can do. With diabetes, this can be more of an emotional disease with all the response and the education and the trials that are going on. You find that also there’s more concern and that physicians really need to team up. So we know that the doctor’s part of the team, we know the cardiologist is part of the team. Dentists should be part of the team. Foot doctors should be part of the team. But there was never a mention of the psychologist being part of the team until now where I start to see that you know, maybe this should be part of the team.

Paula Trief:   I mean we psychologists all think that and there’s definitely a movement in that direction; ADA just came out with psychosocial guidelines, the first guideline statement around psychosocial issues and diabetes, so that was really really big that that’s been addressed. I think in general, even with other diseases, there’s a growing recognition of the role of emotions and relationships and coping styles and all those, you know, squishy things play in illness and in managing illness. The difficulty is one, it’s hard to find mental health people who are focused on diabetes. It’s not just the physicians who are not looking for the mental health people, but the mental health people are not necessarily focusing on this. So now the ADA and the APA, which is the American Psychological Association, are doing a training program where they’re training mental health people in diabetes, and that’s a beginning. But it’s a small number of people, and a big country. So yes there’s definitely a growing recognition that those things play a role and really you know we’re talking about well-being. So it’s not only about glycemic control, it’s about how you feel about your life.

Steve Freed: What are some research things you feel that we need to do in the future in this area?

Paula Trief:   Well actually I think that the issue that you raise is a really good one. I think we still we still don’t have a lot of good data that shows that that bringing mental health into primary care or into diabetes care translates into things that we can measure. We have to be able to show that something changes in order to get insurance companies to pay for it. Medicare, Medicaid, all that. We have some data on that but we’re just beginning to; the same thing with these telephone interventions. That hasn’t been picked up because nobody pays for telephone interventions. They’re starting to pay for online interventions; we are starting to see a little bit of that, but they don’t pay for telephone at this point. So if I’m a provider I don’t want to talk to somebody on the phone because I don’t get paid, or my boss won’t get paid. So I think looking at ways to get reimbursement for mental health services and more accessibility is definitely something we need to keep working on.