Experiences of therapist and patients with the BPDSI-IV
Nine out of ten patients reported at least one benefit of the repeated assessments with the BPDSI. Examples of the various benefits that patients mentioned are: they liked that it specifically measures borderline symptoms (in contrast to the other ROM instruments); that the BPDSI was repeatedly used clarified whether therapy was making a difference; it is exposure to discussing their feelings with someone other than the therapist; that it made them more aware of their symptoms ; that it made the symptoms more clear for them; and that it gave them the feeling that the disorder became more clear to the therapist.
Well I think it is very good but what I find difficult and certainly found it, and certainly in the beginning, super confrontational with someone you don't know very well, with whom you are not really going to build an attachment relationship because it is not one of the therapists, to talk about it in that way. Yep, that's just really scary. On the other hand, I think it helped. If I now feel insecure or anxious, it is very difficult for me to use my social environment for this. And my social environment are people that I have selected myself, where I feel confident or not myself. But then when I find that difficult, my mistrust increases and my confidence decreases and I find it more difficult to be vulnerable. Suppose I only had the therapists then I could still think very much 'yes, they are specialists, they will understand me’. And although the person who takes the ROM is of course not just someone off the street, you are kind of forced to talk about it. So I feel it is also a kind of exposure or something and I like that but I also found it difficult.
The results allowed me to take more account of myself. For example, ‘why is it that my anxiety symptoms have increased?’, then I could reflect on these feelings. That's what I learned here: standing still. Normally, I haven't done that in years. I'm someone who walks away from my feelings. Whatever the outcome was, I always tried to talk to the practitioner about it, about what I had to do, how I can improve.
A patient mentioned that from the results of the BPDSI-IV it became clear to the therapist that the patient had self-injured himself, while they had not talked about this subject in therapy. One patient experienced the interview as more personal than filling in a questionnaire (on the computer), because it was possible to explain her answers (note that the BPDSI is a semi-structured interview).
In any case, I prefer a conversation more than filling out a questionnaire, it is more personal. Questionnaires are generally the same for everyone. In the conversation you can give your own explanation more, more specifically tell something detailed or something. You can go deeper into it than with a questionnaire. A questionnaire does not really suggest an addition or something. I can never make an addition or add an explanation, I can do that in an interview.
Also another patient seems to prefer the approach of the BPDSI interview above the questionnaires on the computer. The interview made her think more consciously about the symptoms she had experienced.
Again the interview part because that was what really made me think. You can simply click away those other questionnaires. And you know that at some point if you walk along in psychiatry as a client for a while, then you have had the questionnaires so many times that you can dream them. And actually you think at that moment, ‘it says last week or last three months or last six months’, and then you try to think a bit about it, but you don’t do that very much. While in that interview you do that because it has a completely different approach. And you are much more forced to consciously think about the past week or the past three months.
Another patient mentioned that following his own treatment course with the BPDSI, motivated him to go on with treatment.
It is a kind of reality check with yourself. You have to give an hour and a half very conscious answers about a recent period and how often something happened. And you find out that one thing still happens more often than you like and the other has actually been reduced a lot. As a result, during the course of the treatment, you will also increasingly see what your own progress is. And that is very motivating to continue with the treatment.
Another benefit that was mentioned was that the results made it easier to explain the disorder to loved ones. “I can imagine that for other people such insight can also be important for the family, to explain that the therapy goes in a certain way, and I have decreased on this and I have just gotten better on that.”
To summarize, the above patients gained insight because of the BPDSI-IV.
Most of the therapists mentioned the disorder specificity as a benefit of the BPDSI-IV; it measured what they were treating the patients for. A therapist mentioned that the subscales of the BPDSI-IV made the symptoms of the disorder more insightful and it made it possible to see changes in treatment course.
“And then at least you get a little more insight into: ‘hey, what about the different domains, and where are the biggest problems, and what about the emptiness, what about the relationship, what about..?’“
Another therapist mentioned that the BPDSI-IV made it possible to classify and that the clear cut-off point made it possible to see if a patient still met the criteria of BPD.
So then yes, the BPDSI is what I like to look at, because then you have those subscales matching the BPD features. That those features of the borderline personality disorder are set out over different time periods. Yes, I find that is helpful in the light of: ‘where do I stand regarding my goals and the patient regarding his goals and do I recognize this in the subscales?’
Another therapist: “it does make it very specific, the results on symptom level”.
BPDSI: Disadvantages and recommendations
Most experiences of patients with the BPDSI-IV were positive, but seven out of ten also mentioned some disadvantages or recommendations. All but one of these seven patients also mentioned advantages or mentioned that the disadvantages did not outweigh the benefits. Two patients mentioned that the questions of the interview can be hard or difficult i.e. because it was hard to recall how many times things happened and another patient mentioned that sometimes she was done answering questions during the interview, but nevertheless the interview was an important part of the treatment for these three patients.
Sometimes you really get tired of it. But after a while you think yes, you know this for yourself.
One patient felt as tense as before an exam, however, this did not seem to be as important as the insight the patient gained of himself.
The only negative side is more tension for the patient, as a kind of exam; ‘Did I do it well or not?’ More the excitement of ‘what do I hear, how do I do.’ But I don't think that outweighs the image you get about yourself.
The same patient also mentioned that he would like to receive the results consequent on paper. Another patient mentioned that some questions about symptoms, which the patient did not recognize at the moment, could lead to certain ideas.
Maybe there are also questions between which you normally do not bother and that it gives you ideas or something, that could be. I would say [for] myself, when I am in a very difficult period and there will be a certain question that I had not thought about myself, then it could also give me ideas.
The same patient suggested using the interview questions in therapy sessions so they have more time to reflect on the issue.
It was also mentioned that it was confronting to undergo the BPDSI-IV interview with an interviewer which the patient did not know well and without building an attachment relationship. The same patient however explained that you could see this as ‘exposure’, which was a positive experience. One patient mentioned that the questions about addiction and using medication, fears, mood changes and sadness, brought back memories which made her sad and anxious. This patient was wondering if this is positive or negative because it also made her aware of past and current symptoms.
I get in a mood, of course, that makes me remember things that are not nice, and of course it makes me sad or anxious. But I don't know if it is negative. So it is awareness.
The same patient mentioned that a lot of the questions asked of her were nog longer relevant which she referred to as a waste of time. For a long time, she was not cutting herself anymore but still it was asked in the interview. She recommended removing irrelevant questions and allocating more time to subjects that are more important to her.
"Remove the pieces that do not suit me and spend more time on pieces that are more important to me."
Two therapists’ said they would like to see a more expanded report of the results of the BPDSI-IV, i.e. with more explanation about the symptoms or a verbatim of the interview.
Well, the report sometimes may be a bit more extensive. That there is a little more explanation about what exactly the symptoms are. Because then you see, for example, decrease on relationships or on emptiness, but I would like to add a little more words, also for the client. If the client can do something with it. But then you are mainly talking about the report, but I could suggest some improvement there.
One therapist mentioned the effort of the patient and interviewer as a disadvantage. Suggested was to take the interview only once every six months instead of once every three months and adding a BPD self-report form in the meantime. Another therapist also mentioned the use of a BPD self-report form which would take less time and would be more easy to use in treatment centers which are not focused on only BPD.
It is quite difficult to administer, you have to do an interview. I would really like it if there was a self-report list. Which requires less work, so that it could simply be used much more. Not only here but also elsewhere. Because I think the work where I was before, there was a lot of borderline. But you weren’t just going to do the BPDSI, because I also think that you already suggest a lot. Then you already suggest that someone has borderline. That is possible here because everyone has it when they come here, but in other settings that is much more difficult. So then I would really like it if there was another way.
One therapist mentioned the risk of using a semi-structured interview causing important things possibly to be missed because questions can be steered. Another therapist mentioned that the BPDSI-IV is quite literary based on the DSM, the result can be that the questions of the BPDSI-IV can be abstract to the patient, which could cause errors
There was a patient who really had questions like: what is that ‘emptiness’? Then I really had discussions with her, and at a certain point I just took the BPSDI and went to see it with her, and I noticed that these are also quite literal questions about how it is described in the DSM. I think that is a disadvantage, it gives a lot of noise I think. Because it remains so abstract, for example emptiness.
Another therapist mentioned that he would like to see more specific description of symptoms accompanying the subscales describing the nature, the frequency and the severity of the borderline symptoms at the time of the measurement.
We already know that we only treat people with borderline. I would like to know more; What do the symptoms look like? How intensive are they? What is the extent of suffering? Has it changed?
One therapist questioned the validity of the BPDSI-IV. Two therapists wanted the cut-off point to be less absolute.
Clients really can get a terrible tendency: 'yes, but I have to go below 15 because then I will be cured’. That is very sad when the next time is 17, then you have it again. They also become very anxious about it: 'I am now at 14, I have to get out of treatment now because then I no longer have borderline'. So I would like to have it a little less absolute. Also because it can still fluctuate strongly.
It was also mentioned that the BPDSI-IV only measures the DSM- personality characteristics and that it does not measure the level of personality functioning.
So you measure the outcomes, the consequences of the personality problem, but you don't measure the personality problem in itself. So that's a disadvantage. But I understand very well that it goes like this. We also do a SCID in the intake here. You indicate someone here for treatment based on their symptoms. So I also understand that you measure it that way, but that is of course really a shortcoming. That you don't, understand how someone is as a person, and how things are going differently. You only measure the characteristics.
Experiences of therapists and patients with ROM in general
Importance and use of ROM feedback
ROM feedback was usually given to patients during evaluations in which treatment plans were being discussed. Some therapists’ gave ROM feedback during an individual session (before an evaluation). Patients mentioned that ROM feedback was used to make decisions in treatment, like formulating treatment goals or transition to aftercare and to monitor the treatment course.
I work in education, I teach, but I also want there to be a learning track and that we work towards something and that you can hold on to something that you can test. Yes I don't know. For me it makes perfect sense in the learning process that you test and monitor. And that you report results and you look back on it, I don't know. In my head that cannot exist without each other.
I would prefer to always be in therapy, that is just very safe and you have a place where you can discuss everything. In the beginning it is very difficult to find that trust. And once you have that trust, it is very difficult to let it go and do it by yourself. I think it is very nice for both the therapist and the client that you have that ROM to say: ‘Yes, it is going well, so you can do it’. The moment you didn't have the ROM, it might just be based on the conversations. Now you really review exactly what happened in the past three months.
Most participants gained insight in their disorder because of the ROM feedback. It gave insight into their own suicidality, the treatment course, the kind and the severity of the symptoms.
One patient describes it as “A piece of awareness. You are by no means aware of everything if it is not mentioned; that something goes better or worse.”
Not all participants got a better insight in or monitoring of their symptoms through ROM, for example one participant mentioned a lack of confidence in ROM and another participant had a comorbid disorder which made ROM confusing.
Four patients felt the therapists got a better understanding of the patient because of ROM. This was mentioned by two patients who found it hard to explain emotions or symptoms, one patient who had varying ROM results which was discussed in treatment, and one patient who felt that ROM brought up subjects which aren’t discussed in therapy sessions.
Of course, a lot of questions are asked during ROM. Questions that may not normally surface during a conversation. So that you address other topics than you would just have in a conversation.
”There is a perverse incentive behind ROM.”
ROM was described by one therapist as initiated by and as an obligation of the insurance company. Money is invested in ROM but could also be spent on better care. However, that did not seem to be the dominant picture of ROM among the participating therapists.
A therapist described ROM as: "ROM is actually just the figure with which you say: ‘where are we actually regarding this goal’. It is also very much about what we have actually achieved here in the recent period.”
ROM was described as a 'quick screener' for present psychiatric symptoms, which can be discussed with the patient. ROM is seen as an addition to the previously formulated treatment goals and measuring every three months ensures that there are differences in symptoms over time.
Another positive side effect of the ROM is described as: ‘An instrument that objectively goes through all those complaints and scales, it is an addition to your clinical view’.
Another therapist gave the following example: “You work here in attachment relationships where transference plays a major role and your view can be clouded. If all goes well, this kind of measurement provides you with a clear view.”
It was experienced as pleasant that someone from outside the team, the test psychologist, was engaged. This, because the test psychologist is not directly involved in the dynamic of the patient and therapist. In addition, the patient is involved in the treatment by ROM.
Therapists’ however also were critical about ROM and do question the reliability of ROM. It was frequently mentioned that ROM couldn’t be seen separately from clinical observations by the therapist. It was also mentioned that ROM is a snapshot, depending on situational circumstances.
For example, sometimes you come by a client whose ROM outcomes deteriorate greatly in the first few months, but sometimes that is not a bad sign at all. Because someone starts to feel more and think about these feelings more. In that case it is true the symptoms increase but then it would be misinterpreting ROM when one would say it is not going well. So in that sense I think the displayed outcomes are on a superficial level. So I just think ROM is not enough to say anything about the treatment result because my clinical view is also absolutely essential.
ROM was described as expensive and time-intensive. At de Viersprong, four ROM instruments were taken, while one is the most used in therapy, namely the BPDSI-IV. A therapist wonders whether the cost benefits of the ROM would be positive.
Another therapist: ‘Many of those questionnaires are self-report lists and they are not reliable in people with borderline. Some people can really display something quite well about how things are going now or how things have been going over the past period. Some people can't. The weaker people are structured, the more distortions there are sometimes. I think that is really a problem with these measurements.’
One therapist mentioned that there might be a learning effect among patients in answering ROM questionnaires, a coloring of answers due to not wanting to complete the treatment or, on the contrary, giving ‘better’ answers than the patient actually feels, or choosing a good day for filling out ROM. Patients may see the ROM as a school report or experience the feeling of having to perform. Therapists wonder if you can measure the effect of the treatment based on symptoms.
”So then the experience of the patient becomes a piece of paper. The experience is externalized and the patient has to read on a piece of paper whether he is doing better and I find that very strange, I find that surprising. Because it assumes that we can measure it very well and that we therefore assume that it is a result of treatment.”
Other shortcomings mentioned are possible bias, too many confounders, and a number of organizational shortcomings such as the planning of ROM.
Importance of emphasizing ROM culture in organization
ROM education for therapists
Therapists have different experiences with education about ROM. A therapist mentioned he hadn’t had any education about ROM and another therapist couldn’t remember having received education about ROM. Another therapist mentioned that therapists have undoubtedly been given information but was unable to remember this well. Three other participants also mentioned that education about ROM was a long time ago. Four participants mentioned that they had received an explanation about ROM from the test psychologist during their introduction period.
ROM culture among therapists
It is remarkable that more than half of the therapists mentioned that they mainly used the BPDSI-IV in treatment and that they choose to not use the other lists because of various reasons. For example, a therapists mentioned that the PDS is too sensitive; two therapists mentioned that the PDS was not applicable for the patients; another therapist mentioned that the BSI always yielded high scores; and four therapists mentioned that they did not use (all) the instruments optimally due to a lack of knowledge. Examples of a lack of knowledge are therapists who are not sure how to explain or provide feedback about the lists, just recently found out that the BPDSI-IV is an interview, do not know how to integrate the lists together and neither how to integrate the lists in therapy, or are not familiar with the content of the lists. Therapists would like to receive more information about ROM, so they can use the ROM more optimally. There also seemed to be a need for knowledge about the developments of ROM with regard to the insurance companies, so they can explain this to the patient. Therapists were thinking about education about ROM in different types; brochures that are easy to copy, a refresher course every now and then, but also feedback about the aggregated ROM results of the department. A therapist also expressed a need for a guideline for feedback and interpretation of ROM:
Because now we do it a bit because it has to be done, and I can give it a twist, but that is really in my own way. Everyone would have a different way, so that doesn't seem very good to me either.
A good implementation of ROM was seen as important. On the one hand to motivate patients for ROM, on the other hand to make therapists feel familiar with ROM.
"I think when you can see what it gives you it is helping, but if you can’t then it becomes a [sigh] you know, then it just becomes something you have to do extra and you would think something like: ‘I am already telling to my therapist how it goes?’ And if you don't make that clear, it just becomes an annoying list. So yes, that is not actually my opinion, I think it can really have an added value, but you would also need a mutual culture to consider it in that way and the substantive added value is also visible.”
Another therapist mentioned the importance of training new employees in ROM in order to emphasize the importance of ROM in the organization.