Luigi Grassi, M.D.
Professor and Chair of Psychiatry
Chair Department of Biomedical & Specialty Surgical Sciences
University of Ferrara, Italy
Dr. Baile: So thanks for coming to the lecture. My name is Walter Bale and I'm Director of the Program on Interpersonal Communication and Relationship Enhancement in the Department of Faculty Development and we're really pleased to have an international visitor today. Dr. Luigi Grassi who has been here at MD Anderson before and who has worked internationally in the area of distress and cancer. And he is currently professor and chair of psychiatry at the University of Ferrara, Italy, and chair of the Department of Biomedical and Specialist Surgical Sciences. Dr. Grassi got his medical training at University of Ferrara and then postgraduate training at University of Bologna and he's been chair of Psychiatry since 2002. He's been president of the international society of psycho-oncology from 2006-2008. He's been really involved in a lot of international programs bringing psycho-oncology research and training across Europe. For those of you who don't know that Europe is really avant-garde in incorporating psychological care for cancer patients into the National Health Act. And one of the ways of implementing that has been through the use of detecting distress in cancer patients. So, without further ado, I'm going to welcome my dear friend and colleague, Luigi Grassi. Thank you.
[ Applause ]
Dr. Grassi: Thank you. Good afternoon everybody. It's a privilege and honor to be here to spend some days to attend the Faculty Developmental unit and to be encountered with old friends again. And I thank you, Walter, for inviting me, for your kind words. There was a mouse here that I don't find anymore. Here. Okay.
So just before starting and you have understood that I'm a psychiatrist working in the University of Ferrara, so I'm interested to know about people also where they come from. And Ferrara is actually here. Northeast of the country, a small, small town, very nice town, and very often, when I meet people, they tend to ask me, "So Ferrara is the place where the Ferrari cars are produced?" And unfortunately, I have to say that it is not exactly the case because Mr. Ferrari started to create the Ferrari car in Maranello that is in Modena so actually here, maybe 30 miles from my town. And so we are not exactly the town producing that beautiful car. But we have other things, other roots that can be found the old history from the Etruscans with the beautiful pieces of the Etruscan art in our museums. We have very interesting pieces of our history in the Byzantine period in this beautiful Abbey full of wonderful frescoes in a little village nearby my town. The roots in the medieval history when the town was built with a wonderful cathedral built in 1161, the castle, beautiful old walls surrounding the city. Then the university that was founded in 1391, as Walter many times says, Nicolaus Copernicus graduated in our university. Lucrecia Borgia was the wife of one of d'Este family. So we have a lot of history and museums in which we have Giotto School's [phonetic], Giotto School paintings and Bastianino. And also more recent wonderful metaphysical paintings by de Chirico. So, if you are initially pleased in the--in going from Florence to Venice there are two specific towns that all the touristic travel agency often suggests, have a stop in Ferrara, it's exactly in the middle, many trains stop to this town and you will not be disappointed at all.
So the talk of today about this brief, short introduction is to speak a little bit about psychosocial responses to cancer and distress definition and consequences in clinical care. The opportunities that we have today, thanks to a big work done in the United States starting in 1997, but also, many challenges and the problematic issues that should be mentioned and that should be discussed. So that cancer is a stressful, traumatic event is something that we all know. Physical dimension, psychological dimension, and the interpersonal dimension are threatened by the diagnosis of cancer, by cancer, the trajectory of cancer, cancer treatment, the body image, the physical symptoms related to the disease itself or cancer or cancer treatment like pain from one side, fatigue, nausea and vomiting are terrible side effects of this terrible, dramatic--traumatic disease, that actually really much also threaten the psychological, behavioral, spiritual dimension of each person affected by cancer as well as the family relationship, interpersonal relationship in general, social relationship at work, and in the relationship with other people.
The variables that we know today after 30, 40 years of psycho-oncological studies and then there's for sure many mediating variables involved in determining the response, the psychological response to cancer including coping mechanism, the previous personal experiences, spiritual and religious beliefs. There are many, many studies today trying to understand the different cross-cultural aspects of the psychological response to cancer and also the spiritual and religious belief as a part of the mediating system that help or maybe does not help patients to adjust to the disease and to the treatment. Medical-related variables, very important for interpersonal variable, the so-called social support system including the family, friends, community resources, cancer affiliation, et cetera. The outcome is a stress response that can actually facilitate the process of adjustment as for grief. Cancer is a disease related to loss and needing people to grieve for this loss. But for many people, this is not the case and for many of them, there's a situation in which symptoms of psychological suffering, emotional suffering, spiritual pain, generally called distress, is the outcome, so a kind of maladjustment to the disease and the treatment. For that reason, and in order to avoid possible stigma related to the word psychiatric disorder or psychopathology, the distress has been used as a way to indicate this kind of response when it is maladjusting for the person and is defined as a multifactorial unpleasant emotional experience of a psychological, social, and spiritual nature.
Death may interfere with the ability to cope. It's very clear that distress extends a longer continuum from normal sadness, normal fear, normal tension to more disabling conditions such as the depression, anxiety, classical psychiatric disorders from this point of view, existential crisis. And this maladjustment and this dimension disabling condition should be assessed, screened, assessed, and properly treated. Through treatment, we can avoid bad, terrible consequences of the distress. And since distress can be evident in every period of the cancer trajectory from the early diagnosis, actually before the diagnosis, just finding the suspicious symptoms during the communication of the diagnosis and awaiting for treatment, that possible phase in which treatments are concluded and the person has been discharged from the hospital, discharged from the outpatient clinics, and it leaves the situations sometimes defined as a sort of being lost in transition. These distresses of survivorship is, for example, the stress of survivorship is, for example, one of the areas in which psycho-oncologists are working very much because survivorship is increasing a lot.
But the quality of life of cancer patients who are surviving from cancer does not necessarily correspond to the condition in which they fought cancer and they were now in a healthy situation from the physical point of view. From the mental and interpersonal point of view, they could have problems that they need to have some intervention. And as we all know, when treatment phase, when we are in the condition where the disease is, you know, recurrent or in progressive phase, in the end of life, distress becomes more and more common. The importance of this topic is that even if we know that many cancer patients, around 30-40 percent after an initial period of suffering, they tend to recover and 20 percent of them actually feel themselves changed for better, they feel in a different way, they consider cancer as a stuff that had modified--is modifying, they're very positive way of their life. And we spoke about posttraumatic growth, 35 to 40 percent of patients actually feel completely different kind of symptoms with anxiety and depression, persisting depression, persisting anxiety, deterioration. And in this kind of condition, we have, absolutely, to intervene.
The consequence of non-treated distress and non-treated maladjustment are very--are many and very complicated. Deterioration of quality of life is one of the more immediately needed to understand problem. Distress is related to a higher subjective perception of pain for example or other symptoms. Distress is related to distress in the family beside the patients. Long rehabilitation has been also shown to be a consequence of psychosocial morbidity or non-treated distress. From the interpersonal point of view or views, adherence to treatment. Very interesting data from the psychobiological point of view seemed to indicate that also chemotherapy is less effective in distressed or depressed cancer patients. There are many data that many of you already know about that the possible relationship between hopelessness and depression, distress and the shorter survival, apart from the risk of suicide that is usually one of the possible problems related to clinical depression. So from that series of reasons, distress has been defined as the sixth vital sign to be always screened, assessed in a proper way in order to catch and to detect those who are in a maladjustment condition in order to send them for proper intervention. And the sixth vital sign exactly as it is for temperature, blood pressure, respiratory rate, and pain as the fifth vital sign is a very important position statement that has been proposed in Canada by the group belonging to Calgary University, by Barry Bultz particularly and Linda Carlson, in which the use of algorithm, both for screening and assessment, are related to other algorithms that has a very important role in after assessment, in guiding clinicians to treat distress. This position statement from Canada is being taken by the International Psycho-Oncology Society endorsed by the UICC a couple of years ago, and is something that has been gradually taken by all the different counties and the Federation of the National Psycho-Oncologist Society that was created in 2006 and gradually developed through the years across time are now taking this position statement as something to be used in the relationship with the local and national governments in order to create possible resources, to create models, to create services throughout the counties in order to help cancer patients to deal with distress and with psychological problems secondary to cancer or cancer treatment.
So we have now opportunities for screening. And one of the most known and used resource and opportunity comes actually from the work done by the National Comprehensive Cancer Network that in 1997 through a panel working on the distress management guidelines developed the distress thermometer that many of you know for sure. So a very simple visual analogue scale reminding the thermometer and--on a zero to ten--on a zero to ten scale can help the patient to indicate the level of distress at that specific moment. And the distress thermometer together with the series of possible problems that the patient is facing can be given to each patient, can be put into the clinical chart and it is a way to understand very rapidly, very quickly what is the problem of that patient. And data are showing that a cutoff of four, so between four and five is a cutoff indicating that that patients need to have a more specific assessment and in case, he should be referred to a mental health professional or psycho-oncology or psycho-oncology services. The distress thermometer has become one of the most used instruments and tools in the world. The translation and validation in many different languages is now available. There are studies in the Netherlands, in France, in Turkey, in Korea, in Japan, that have validated and are trying to implement the distress as the sixth vital sign to be inserted and implemented in all the possible cancer centers in those countries or better in all the healthcare system, in all the healthcare general hospitals not only very specific cancer institutes.
We worked in a Southern European psycho-oncology study starting 2001-2002 with a group of colleagues working in Zaragoza and Barcelona and in Lisbon, with a European-funded research project aimed at improving health staff's communication and assessment skills of psychological morbidity. So, distress in cancer patients and to develop culturally relevant methods to training doctors in recognizing their patients' psychosocial problems. And Doctor Walter Baile was the supervisor for the communication skills training phase of the study. And in the study, we actually used the distress thermometer sort of about ten years ago, in which we actually showed that again, we just confirmed the fact that a score of four or five are actually the scores that maximizes sensitivity and specificity in detecting patients that have actually a psychiatric disorder as quoted into World Health Organization International Classification of Disease tenth edition.
Europe is particularly interested in working in the psychiatric area by using the World Health Organization System and it is not exactly the same in America, in the United States, in Calgary, North American journal is used so the DSM, even if the DSM-V that is--would be published in 2015 and it will be published together with ICD-11. They try to create a more homogenous kind of system. We also created the basis for an Italian validation study about the distress involving 38 centers in--throughout the country representative of all the different regions, evaluating both at the baseline and three months later, cancer patients with a newly diagnosis of cancer, the distress thermometer was compared with other classical psychometric instruments to detect a psychological morbidity. So the Hospital Anxiety and Depression Scale [inaudible] symptom eventually seen. More than 1,000 patients participated at the baseline and the 7--and the 48 of them to the follow-up phase. And what we observed was that those who had scores indicating clinically significant distress are more about four or four or above four were about 35, 40 percent and the sensitivity and specificity of the distress thermometer was compared with the global stress index and the total score of the hospital anxiety and depression scale is used as gold standard.
And in fact, they also showed that that prevalence of psychological morbidity was about in one patient out of three. After two months or three months later, more or less the same, so the distress thermometer again indicated a caseness that's about in one third of the patients it was that confirmed by the use of the gold standard instruments. Interestingly, those that were long case at zero became case at the one, about 15, 20 percent of them and some that were case at zero were not distressed three months later, about ten, 11 percent, 15 percent of them. So this means that the distress thermometer or screening instruments should be given in--on a regular basis to monitor the possible changes of the distress score overtime. For those who had score higher than four, a possible algorithm for intervention should be applied. And this is one of the algorithms that the National Comprehensive Cancer Network Guidelines about the distress thermometer and the distress management suggests, and this is quite complicated, I don't want to go into the details of this. But in any case, referral and treatment from psycho-oncological services is absolutely necessarily at this level.
The NCCN distress management guidelines also indicate that there are standards of care that should be met, that should be implemented in every cancer center. Distress is a clinical important sign, it has to do with the quality of life, it has to do with possible survival with interpersonal relationship deterioration. So, all patients should be screened for distress across the disease trajectory and in every phase of that. Also, the NCCN guidelines indicate the need for educational and training programs in order to ensure that all healthcare professional have knowledge about the screening and knowledge about the psychological and psychosocial consequences and complications related to cancer, that psycho-oncological services should be implemented in every cancer center and we say now, not only in cancer centers, but in all the possible places in which cancer patient can receive their treatment and care with general hospitals where cancer wards or the out-patient clinics are. With quality of distress management programs and services also included in institutional continuous quality improvement projects. So a very clear indication about what to do with these guidelines and what to do with the distress screening in cancer institutes.
If these are the opportunities, there are, in anyway, many challenges and problems and I would like just to speak shortly about the challenges that we have when we speak about screening of distress, screening for psychological complications and consequences of cancer. The first important aspect has to do with the need for more dissemination. Even if the literature about psychosocial consequences of cancer is huge, there are many, many data and thousands of papers published in many different journals including cancer journals, the application of the distress thermometer is still quite poor and [inaudible] for example, indicated at national meetings they try to understand by asking 1,000 American oncologists if they used actually on a regular basis the instrument and only 14 percent of them used the screening instrument. The reasons were poor availability to mental health services, poor knowledge of the NCCN guidelines, poor experience, and lack of time.
That was confirmed by another study carried out in the UK by Mitchell [phonetic] and colleagues who found about the same thing, 25 percent of cancer physicians in the clinical practice assessed regularly emotional symptoms. And this was a very strange result by Paul Jacobsen that the same institutions that are part of the National Comprehensive Cancer Network in the states, only 20 percent screened outpatients as the guidelines of the same network recommended. So we need to create more education. Nurses in particular are really active from this point of view. This and the following slide will show you very shortly the activities done by nurses in trying to change the attitude and in order to implement the use of the distress screening tools to assess psychosocial issues in patient's care through specific program like the Individual Cancer Assistance Network, distress management for oncology nursing or ICAN protocol. Japanese also did more or less the same by creating a specific program called the distress screening program in ambulatory care or DISPAC program in which they tried to increase and implement the use of the distress thermometer in cancer outpatient clinics. The group of Ken Shimizu and Yosuke Uchitomi in Tokyo and what they found was that when they started with this kind of educational program and model, they found that actually, many, many patients, almost all patients completed the distress thermometer and eight percent of those, they didn't complete it because they were in a physical situation that was not good enough to allow nurses and cancer physicians to assess distress. They found and confirmed the fact that 37 percent of the patients were cases of clinically significantly distressed. The recommendation for referral to psycho-oncology service was given to almost all of them and the proportion of targeted patients that had major depression adjustment disorders, so when in distress is assessed, you can evaluate in a more specific way the kind of disorder that is behind the distress as a general concept. And there was a big increase of the treatment of patients that was only from 0.3 percent before the educational model and that became 5.3 percent after the educational model. The first thing that appears here is that, in a way, the number of patients that are treated is quite low with respect to the number of cases that is much more higher.
We did the same educational program in my university center and we actually tried to look at the difference in referring patients from cancer wards and out-patient clinics in a first phase and then after, an educational model. And two years observation of more than 2,000 cancer patients with a newly diagnosis of cancer, only 6.7 percent were referred by cancer care. And many of them were actually false negative, so 13 percent of them when we assessed them were not exactly distressed, they didn't have any kind of clinical symptom or clinical condition indicating the need for intervention. So in the second phase, we implemented an educational program through the oncology division on distress management with four specific meetings on that. And then, for a whole year, we observed the possible outcome of that. And of 1,000--more than 1,000 newly diagnosed cancer patients within that year, 52.6 percent were [inaudible] to distress. So we have to implement and to ameliorate this educational and this kind of guideline, but that was a good result. And half of them that were actually cases were referred to the psycho-oncologist services. The outcome, the final outcome of--is that the routine use of distress and the problem list determined a higher and more accurate referral of patient to our service, but still quite low with respect to those that should be assessed and properly treated.
So there are other problems and the third challenge is that apart from the need for application and the need for implementation and educational--and education, we need also to improve communication skills and relational skills in nurses and doctors. This is taken from a very popular book that is a--the history of a very well-known journalist in Italy, Tiziano Terzani, who worked in China, in Japan, in South America and he developed colon cancer and was treated in a different way because he firstly followed the scientific medicine and he goes actually in the states and then he moved to India for trying to have alternative kind of therapies.
And what actually he wrote in this very interesting book that is in English translation is, "Another Turn on the Merry-go-round." He said, "My doctors took into account only what appeared to them to be fact and not the elusive other that might be hiding behind them. I was just a body as far they were concerned, a body that was sick and that needed to be cured. It was useless, my saying that it was the mind, too, possibly a spirit and certainly an accumulation of stories experiences, feeling thoughts and emotions. All of which must have had some bearing on my illness. What they were after are those cancers itself, the kind of cancer that anyone might have had. So the difference between objective and subjective that got my cancer. Where was I in all of this?" So we need to move on and to facilitate not only screening as just an objective fact, but something having to do with communication and relation. Last week, Harvey Chochinov spoke about the ABC, D for dignity-conserving care with attitudes, behaviors, compassion, and dialogue as four pillars for--dignity-conserving care has an important role in all clinical care for every cancer patients that can be applied and said last week to teaching clinical practice and standards.
The role of the relationship between doctor and patients is actually something, again, for which we have a lot of data. And I want just to show you some interesting results that we are gathering through another multicenter international study involving Italy, Austria, Spain and Portugal that--actually, the aim of the study is different from distress because it has to do with the possible psychosocial variables related to acute and delayed chemo-induced nausea and vomiting. And for the moment, we have 215 patients, most of them Italians and then 72 from Spain. Barcelona, again, is involved in that. We are waiting for the data from Austria and Portugal. And what was emerging from this first analysis of the data is that we were giving the patients the Functional Living Index for Emesis in order to understand acute and delayed chemotherapy and relating to quality of life. The patients' satisfaction, we, physicians, question that to assess the quality of the relationship between physicians and patients that has to subscale physician disengagement and perceived support including empathy. The distress thermometer, a true subscale of the many mental adjustment for cancer scale as a way to understand the two most important clinical dimensions of coping that are helplessness, hopelessness from a one side and anxious preoccupation from the other.
What we found was that caseness again was between 36 to 48 percent according to the cutoff that we used. Distress was quite understandably associated with hopelessness, anxious preoccupation, but also with delayed chemotherapy-induced nausea, poor quality of life. But the very interesting result was that high score in physician disengagement, so detachment, coldness from the part of the physician towards the patients. And low score on perceived support, so poor empathy, poor communication, not emotionally focused were also related to hopelessness, anxious preoccupation in higher level of distress. And that means that we have to work, not only in facilitating the administration of an instrument, but also to create a setting for dialogue, emotionally-focused dialogue, and relational skills. It is the exactly what we are trying to do that we already did in the past, both in the Southern European psycho-oncology study trying to adopt what OncoTalk and the communication skills model in here particularly in the MD Anderson in the I*Care facility and the Faculty Development taught us. And adapting and validating to the Italian culture of background of the OncoTalk model with the, again, following the methodology of the OncoTalk model with the three intense days with the senior oncologist that participated very enthusiastically to these workshops, trying to take the benefit of the experience, the challenge of how to tell the truth to their patients, how to--break bad news, how to create a setting, an interpersonal setting that was helpful for them to stay and perceive the patients as partners of the cure and the care. And what we found was actually that was an improvement of specific behaviors, pre and post workshop, both in the phase of breaking bad news, dealing with denial, addressing end of life issues, fostering hope, we measured that according to the methodology that Dr. Baile and Dr. Lenzi gave us and that was something really important and interesting. And that is now something that is applied in many different areas of the country and we hope that that can become one of the key methods to teach medical students and residents and doctors and healthcare professionals working in the cancer care in communication.
So screening, as I said, is part of a process. It is not only administration of a tool. It needs to be part of a model for psychosocial care based on effective communication. It is really important that there is a strong liaison and link to psychosocial services that should be known by all the doctors and by all the healthcare professionals in order to have the emotional dimension, the psychological dimension, the spiritual dimension as part of a personalized treatment, personalized care. Initially, as Dr. Baile said, we, with the help of the Federation of the Psycho-oncology Societies and the particularly the help of the Italian Federation of Self-Advocacy Movement, we're able--two years ago to have psycho-oncology now recognized within the National Cancer Act--I am sorry that is in Italian, but is not difficult to follow. So the development of psycho-oncology is part of the National Cancer Act 2010, 2012. And very interesting from the point of view of training and education, it is taken in the document to reduce the burden of cancer, 2011, 2015 is one of the seven areas of training including prevention, diagnosis, cure, rehabilitation, palliative care, pain treatment, and psychosocial oncology, is part of that. It is actually indicated at--as essential fundamental basic level of training for all healthcare professional working in cancer setting and oncology. So that's a big improvement with respect to the past. That was also because of our work as an International Psycho-oncology Society, that's not just an experiential kind of work, it's just the way to educate and to help healthcare professional to the issues related to psychosocial oncology. And what we have done together with the European School of Oncology is to prepare 10 lectures in psycho-oncology that can be taken at the www.ipos-society.org, that is being translated in nine different languages including Chinese and Japanese, Portuguese and Hungarian, Spanish, Italian, and German. These 10 lectures, some of them have to do exactly on communication and interpersonal skills in cancer care and distress management in cancer. And I think that is a good way to disseminate the work related to what we are discussing today specifically about distress, but also in general about psychosocial issues in oncology. This is actually a duty that we have.
Psychosocial care is a duty in the sense that Institution of Medicine came out with this document that is actually a book about cancer care for the whole patient and they say that today it is not possible to deliver good quality of cancer care without addressing patients' psychosocial health needs. In Europe, we have done more or less the same thing being able to work together with the European parliament and to the commission and the council that worked on reducing the burden of cancer in Europe and that the good result, the good outcome of this work in partnership with administrators and politicians was that the patient-centered comprehensive interdisciplinary approach and optimal psychosocial care should be implemented in routine cancer care, rehabilitation and post-treatment follow-up for all cancer patients. That is in the document published in June 2008. It's a duty in that we can understand that, but it's also a right that patients themselves ask us.
In Europe, there's a movement, European Cancer Patient Coalition speaking of nothing about us, so without us and, again, related to the fact that what is related to care and cure has to do also with psychosocial dimensions, and again, with human dignity. It's something that as David Morrison recently indicated in the symposium about psycho-oncology as a human right that we had in Turkey last October is the cornerstone of rights. And we need to better protect and promote the dignity of patients and families in all aspects of cancer support. But what was said starting from a very specific thing, screening and distress thermometer is actually related to a strong proposition--position statement, in other words, at the organization that some years ago came out with this statement , "There is no health without mental health." And that is very interestingly taken in Australia by David Clarke and other people working about no cancer health without mental health. And this thing, this is a very good way to understand the steps that have been done--that had been done in the last ten years with regard to psychosocial care of cancer patients. I would like to conclude with a two-minute video clip related to the importance of communication relationship issues in cancer care. I don't know how many of you know this movie. That--the video is taken from the movie Wit with Emma Thompson, directed by Mike Nichols in 2001. So 10 years ago, I'm using that with all my students, with all my residents in psychiatry, but also with the rest of the oncology. It has to do with maybe exaggerated way to give an impression of what emotional issues, aspects related to suffering, body language are completely ignored by the oncologist, speaking in a very clear way, in a very honest and open way with health patient about technologies. Oops, I have to go back.
[ Video Clip - Breaking bad news ]
>> You have cancer. Ms. Bearing, you have advanced metastatic ovarian cancer.
>> Go on.
>> You are a professor Ms. Bearing.
>> Like yourself Dr. Kelekian.
>> Oh yes. Now then, you present with a growth that unfortunately went undetected in stages one, two, and three. Now it is an insidious adenocarcinoma.
>> Insidious means undetectable at an early stage.
>> Insidious means treacherous.
>> Shall I continue?
>> By all means.
>> Good. Invasive epithelial carcinoma, the most effective treatment modality is chemotherapeutic agent. We are developing an experimental combination of drugs designed for primary-site ovarian for the target specificity of stage three and beyond administration. Am I going too fast?
>> You will be hospitalized as an in-patient for treatment each cycle. After the initial eight cycles, you will have another battery of tests. The antineoplastic will inevitably affect some healthy cells including those lining the gastrointestinal tract from the lips to the anus and the hair follicles. We will of course be relying on your resolve and to withstand some of the more pernicious side effects. Ms. Bearing?
>> I beg your pardon?
>> Do you have any questions so far?
>> Please, go on.
>> Perhaps some of these terms are new--
>> No, no, you're being very thorough.
>> I make a point of it. I always emphasize it with my students.
>> So do I. Thoroughness. I always tell my students but, they are constitutionally averse to painstaking work.
>> Yours too.
>> It's worse every year.
>> Mine are blind.
>> Mine are deaf.
>> You just have to hope.
>> I suppose so.
>> Where were we? >> I believe I was being thoroughly diagnosed.
So a way to show how the patient is saying to the doctor, nothing about my emotional cues, my thoughts, my spiritual issues, my fears have been detected, caught, even noticed, and I'm alone in deafness and darkness, just hoping for hope by myself. And looking at this kind of movie that will actually start from the communication of diagnosis to the end of life, and is a way to understand all the different phases in this communication and relation--relationship problems are part of all the movie. It's a way to understand how much we have to do in terms of improving personalized medicine, improving person-centered care for all our patients. So the distress is just part of a big more complicated, really humanizing process that is our duty. So, with that, I--just to conclude and I thank you for your attention.
[ Applause ]
So we have a few minutes for questions. I might start off with one. You know, I don't know how many new patients we have here a year. Edwardo, do you have any kind of recollection of the much--in 10 to 15,000? Probably more than that. And, so in big centers in the US where people tend to kind of come to specialty centers often for treatment, so we have the kind of daunting job of--if we're to follow these recommendations of the NCCN and the World Health Organization of really screening for distress, and really treating kind of a large number of people because if you're talking about 40 percent of 10,000, and then doing repeat screening on another 25,000, you can quickly get quite overwhelmed both by the assessment process and by the referral process because we'd never had nearly as many mental health professionals that could really treat all those folks. So, the question that I have is that one, is anyone working on automated systems that would allow someone to, for example, sit down in front of a computer and fill out a form to perhaps give to a nurse and give to a physician? Secondly, that are there any online programs for example distressing--treating distress, for example, can someone log in to a computerized distress treatment program and for example be asked a series of questions and be given some hints about coping? And third, do we need to be training our nurses and physical therapists and other people in the hospital to be sort of adjuncts in treating distress? I mean, because what we didn’t really see was, you know, what does it take to treat distress? One session, two sessions, three sessions, do we have any data on what kind of interventions work and, you know, who should be doing them? I know that's a lot, but maybe you could give some--
Yeah, yeah. Yeah, so we--yes, we have data about the use of other more technologically oriented systems like touching a screen and having distress, and Jim Zabora is working on that kind of stuff. It's not very commonly used in Europe, but there are data about that. In any case, the time that you spend in with the--in one-to-one during the--just the dialogue with the patient is that distress thermometer and problem list altogether, so not only distress thermometer, but those with the problem list.
It takes about two minutes as Shimizu et al showed on--over 500, almost 500 patients. I remember the question about the intervention, the intervention for--yes, it's important to help and to have nurses or other healthcare professionals helping distressed patients. It's really important in a way that is you should find a score indicating five, six, seven, that patient should be assessed in a more appropriate way because that intervention is not related to distress in general, but related to the diagnosis that you make in terms of anxiety, in terms of depression. Maybe the patient should receive psychopharmacological therapy, should receive specific form of psychotherapy, group psychotherapy, so many different possibilities according to the diagnosis. But it's really important that part of the problem could be done by oncologists and nurses that can monitor distress on a weekly basis for example and then can decide what to do in terms of intervention. The third question was, I don't remember that is--
So, the third question involved, you know, very quickly, if you are to use the distress thermometer for a place like this, the services such as psychiatry and such would quickly get overwhelmed. So, is it possible to train--
--other health professionals--
Yeah, for sure.
--to be mini psychotherapist for example and what does that take--
Short counseling or--that's the--psychotherapy is an issue very interesting one because psychotherapy for example cannot be done by social workers and nurses in some countries, Spain, Italy, Germany cannot do that.
Yeah. So, we--according to the [inaudible] we have to organize your system in a specific way. There are other kind of intervention like counseling, short counseling, short session, supportive intervention that can be done, for sure, particularly in groups and that could be one way to deal with the--with this problem.
Are there questions that folks might have about the issue? Yes, could you maybe--we have--wait just Cathy [phonetic] brings over the microphone so that we can hear. Could you just like maybe say who you are, where you work, and so we know you.
Well, my name is Liz [phonetic] and I'm from behavioral sciences. I just wanted to tell you that we are actually piloting the distress thermometer in the thoracic center right now, and one of the questions that we were contemplating is how often should we be administering the distress thermometer? Currently, we're doing it for all follow-up patients who come through, and we found that some patients come more often than we thought they would be. So, we are administering it over and over again to the same people.
So the question really is? I can understand--so how often should you give the distress thermometer, and did you want to address that?
How often is related to the situation of the patient, so every time is considered clinically relevant to give yourself justice, and short question like how are you doing in this way? Are you overwhelmed by something? It could be a way to understand if it's possible to understand more about the list of the problems, the problems that the patients can have, and how to monitor and give them the distress thermometer for the patient, so depending on the clinical situation of the patient. Otherwise, in a very general sense, could we say that--an indication is, at every meeting with the patient, so it could be every week if it's an outpatient basis, and not every day.
So do you think that--I don't know whether your research addresses this issue, but there's been a lot of interest in one and two question assessment tools lately, you know, are you in pain? And--so, is there a surrogate for the distress thermometer such as how are you coping? And I wonder whether or not that's--whether the correlation between the response to that question--
And the distress thermometer really exists given the amount of patients that we need to screen.
This is the interesting point because we actually, you know, the distress thermometer is a way that if it's implemented and used everywhere is a big success. It has many limits, it's a very sure thing, and much information obviously are missed by the idea that distress is defined complicated dimension, it's not just as temperature and heart rate, so objective versus subjective. So, we found, for example, that when we actually use exactly what you say, a very short coping visual analogue scale indicating how are you coping with your disease, we noticed that 25 percent of those that were not distressed at the distress thermometer were really not good in coping, they were poor copers. So that is a way to understand that we, in any case, we will have many false negative by also--by using a distress thermometer--
So in addition to distressed people, there are folks who indicate that they're not coping well.
Yeah, in addition in distressed people, there are groups of--several centers that keep trying to optimize and maximize sensitivity, specificity of the distress thermometer by adding some other instrument very short to ultrashort instruments like a thermometer for depression, a thermometer for anger or irritability, a thermometer for coping. Sort of multidimensional distress, emotional thermometers.
I'm Catherine Chang and I work in [inaudible] Oncology. And I'm very interested in the concept and I tried to introduce this idea into my colleges. And they're concerned about certain things, overwhelming the Psych Department and social work. And two, they really don't address distress [inaudible] and they're kind of just looking at me like a [inaudible]. I mean, there's [inaudible] and I'm wondering if you have any experience with bringing some way to communicate with your oncologist that this is a very important concept.
What we did in my experience was that since our unit is related to the so-called quality of care of the European Society Of Medical Oncology, that is a way to say if you want to be certified by them, you have to do that. And it's a little bit mandatory in--from this point of view, but it helps a lot. At the same time, because of, you know, the disadvantage of this most center are many. The advantages is that we know each other very much and the liaison between us as people working together side by side with the oncologist and nurses is so strong that it is part of their routine clinical activity, and we are actually only two people apart myself and an oncologist. So, it's a way to try to convince them partly by using some standards if they exist, and at the same time, by creating more interpersonal relationship with the doctors or nurses.
So, I think here that the emphasis--the new emphasis on survivorship is really an opportunity. And, you know, I'm not sure you can teach old dogs new tricks. And I think if you look at our young crop of fellows, for example, we are working with the medical oncology fellows now, we do a monthly communication skills, of course, where they role play their own patients. It's really, really a whole different attitude toward total patient care. And so, as these folks and including Eduardo’s fellows, come up through the ranks, you know, in Medical Oncology, I think you might see different opportunities to focus and to, you know, work as a team because the fellows will maybe, hopefully have a different attitude.
I do see that in sort of psych fellows and physicians, and other--the younger ones 'cause I do, but I am also dealing with the ancient ones every day.
Well, I don't know if any of us have an answer for that.
But thank you for your comments.
Thank you, thank you.
[ Applause ]
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