Beyond the Cancer Diagnosis: Dialogue with Darren Haywood, hosted by Adrian Pogacian

Adrian Pogacian: Hello, everyone. Welcome to a new edition of the interview series, Beyond the Cancer Diagnosis. Today, my guest is Darren Haywood from the University of Technology of Sydney.

Hi, Darren. Thank you for accepting my invitation. Thank you for the invite.

I’m sure that will be a very interesting discussion because the subject, it’s, let’s say, not so often used in the psychoncology field. And I will start this interview with sort of clarification of terms about cancer survivors, cancer survivorships. There are two terms that they are often used, of course, by psychoncologists, but not always in the right context.

So I would like to ask you first to define these notions in terms of definitions, and then if there is a difference between them, if not, make a brief explanation of this.

Darren Haywood: Yes, excellent. It’s a great place to start. Yeah, so the term cancer survivor has not really been consistently used, and this goes across clinical practice and research.

So historically, we’ve often gotten two different people using the same term, cancer survivor, but meaning totally different things or different things across the journey of cancer survivorship. So in recent years, we’ve settled on a more consistent definition of the term cancer survivor. So this definition is more encapsulating of the entire process and spectrum of people that have experienced cancer.

So really, anyone living with, through, or after a cancer diagnosis is someone that’s considered a cancer survivor. So from the points from diagnosis onwards, that person can be conceptualized or classified as a cancer survivor. When we’re referring to cancer survivorship, this, on the other hand, refers to the process of living with, through, or beyond cancer.

This includes all the person’s experiences, all their aspects of life, and all their facets of well-being.

Adrian Pogacian: Good. In addition with these explanations and definitions, we are going now a little bit further because you mentioned cancer survivorship is a process, and it is very important to know for us as a specialist and for cancer patients that once you are a cancer survivor and you win the battle with cancer, your cancer experience is not finished. And now we are going in this area of mental health condition.

And some of the patients may experience or may not experience mental health conditions. Unfortunately, mental health condition classification is not the primary subjects, and it depends very much on the cultural background. For example, in Europe, as I mentioned before, the disorder statistic manual is for us like a, let’s say, like a bible.

So we don’t know or we don’t have access to other mental health conditions manuals or guidebooks. First, I would like to ask you, what is your personal opinion about DSM as a structure or as a concept?

Darren Haywood: Absolutely. Yeah. So taking a bit of a step back.

So diagnosis is certainly the dominant way to conceptualize psychopathology across not only cancer, but across all populations. So diagnostic approaches like this conceptualize psychopathology as these discrete categories that we know as disorders. So across these diagnostic conceptualization, really the backbone to that is diagnostic tools.

And one of these tools, like you said, is the DSM. That’s really what is called often called the gold standard tool for diagnosis. So within this dominant way of thinking about psychopathology, it involves a range of different listed symptoms within the DSM and an individual just needs to be present or needs to present with a subset of these symptoms to be classified with a certain disorder or a certain diagnosis.

So the DSM has served psychoanthology and just psychology and psychiatry generally as well for decades. But in the more recent years, particularly over the past decade or so, there’s been increased criticism or recognition of the quite significant limitations of the DSM and the diagnostic approach as a whole. Particularly many of these limitations apply particularly well to cancer survivor populations.

So it’s really important for us to understand those limitations of tools like the DSM and within cancer survivor populations and how we mitigate some of those pitfalls and move forward with different approaches.

Adrian Pogacian: You said about the limitation of this guidebook. I want to ask you additional questions. You said in the recent years, do you think as a professional that COVID-19 is one of the sources that show the DSM limitations in terms of diagnosis?

Because after 2022, when COVID, let’s say, not officially ended, but it’s a constant disease, a lot of new disease evolved and a lot of mental health conditions evolved. Do you think COVID is one of the sources that prove the DSM limitation?

Darren Haywood: It’s a very interesting question. I think that goes beyond just the DSM or diagnoses to the broader, more philosophical question of what are mental illnesses and what is psychopathology. So how do we differentiate that from normality and when does normality become pathology?

So I think that’s a broader question and is something that’s important to reflect on when it comes to something like you mentioned, like COVID-19, which could have resulted in heightened distress across the population and whether that distress falls into psychopathology or now is that closer to the border of just a normal interaction and a normal reaction to a very distressing event. So a lot of these types of questions and these reflections on what psychopathology is, can come back to these diagnostic approaches and how this may fit within mental health classification as a whole.

Adrian Pogacian: You mentioned, let’s say, the philosophic part of what is being normal. The society evolved very much in the past decades and now we are talking about artificial intelligence, digital interventions, and so on and so forth. So in my opinion, and I believe that as much as the society evolves, the notion of being normal, it’s in a permanent, not a change of definitions, but it’s all the time struggle with what normal or normality means and with focus on this discussion in this regard.

I saw, I read that in order to rethinking what you mentioned before in terms of mental health challenges, about a hundred of experts argue that there is a better way or there could be a better way called hierarchical taxonomy of psychopathology or HITOP. Could you make us a description of what HITOP, I guess it’s the correct term, no?

Darren Haywood: Yes, absolutely, HITOP.

Adrian Pogacian: What HITOP means and its structure?

Darren Haywood: Absolutely, yes. So I think it might be useful to take a bit of a step back and maybe summarise some of these key limitations of this diagnostic approach because this is really what spurred on the development of HITOP. And then I can give some background around what HITOP is and what the goals of the system are.

So from my perspective, there are four key limitations to diagnostic approaches and this includes tools being used with that, like the DSM. So the first is binary categories. So the DSM and diagnostic approaches is a binary system with which an individual either meets or does not meet the criteria for a particular disorder.

And diagnosis or non-diagnosis can impact someone’s referral, their treatment streams, the treatment techniques used and the support of care resources as a whole. However, the more modern empirical research shows that mental health is instead dimensional with symptoms presenting on a continuum of severity rather than within these categorical disorders. And further, these modern statistical analyses of symptom level data has found that those DSM categories and the symptoms within those don’t often result from factor analytic assessments of those symptoms.

The second limitation is comorbidity. So comorbidity is quite a limitation that’s often spoken about when it comes to diagnosis and tools like the DSM. So around half the people who meet the criteria for one disorder will meet the criteria for second and approximately half of those people that meet the criteria for two disorders will meet the criteria for third and so on and so on.

The issue with this is that it makes the study of any single disorder very, very difficult. And further, comorbidity is often an exclusion criteria for many clinical trials when it comes to treatment trials as well. This means a lot of the results that we see from clinical trials within psychopathology and psycho-oncology may only be applicable to actually a minority of the population which don’t present with a comorbidity.

The third is within disorder symptom heterogeneity. So the DSM provides a range of these symptoms for each disorder with an individual only needing to meet a subset of those symptoms to meet that criteria for that disorder. So this means that two individuals diagnosed with the same disorder can actually present with very different symptom profiles.

So take for example using a rather conservative calculation that the DSM listed symptom criteria for major depressive disorder has over 900 unique different symptom profiles someone can have and be diagnosed with major depressive disorder. And further, even two people can have the same DSM diagnoses but share even no or very few common symptoms. So this means that a diagnosis really doesn’t provide that necessary clinical information to inform clinical practice to a degree that really facilitates optimal care.

The final key limitation I would like to speak about, and this is really important within cancer survivorship, is physical symptoms. So physical symptoms like weight change, like sleep issues and fatigue are some of the most commonly listed symptoms across the disorders listed in the DSM. However of course many of these symptoms may be present for a cancer survivor but not necessarily due to their mental states but rather due to the impacts of cancer and their treatments.

So many cancer survivors may actually be at an increased risk of being misdiagnosed or under or over diagnosed if proper case formulation isn’t used. So these are just some of these key limitations of the diagnostic approach and these have become increasingly of focus within recent years. So this is where HITOP comes in.

So HITOP stands for the Hierarchical Taxonomy of Psychopathology and it was born out of the body of literature that has explored the empirical structure of psychopathology and these approaches mostly use factor analytic approaches looking at how symptoms and larger groups of these symptoms come together and sit within these larger hierarchical structures. So HITOP really brings together this literature to provide one overall empirically based structure of psychopathology. So how does HITOP differ from something like the DSM?

Well it doesn’t conceptualize psychopathology as these discrete categories called disorders but rather a collection of higher and lower level domains which are each measured on a continuum of severity. So instead people aren’t diagnosed with disorders within HITOP but rather their entire psychopathology is measured and conceptualized on a number of domains moving from more specific domains to more general domains moving up to the top of the hierarchy.

Adrian Pogacian: You mentioned and you talk about the let’s say more like research part of HITOP coming from a literature perspective but how is HITOP integrating in practice? Do you have like practical results or clinical trials that let’s say not prove but show the positive outcomes of HITOP?

Darren Haywood: Yes we have a range of preliminary research of integrating HITOP within clinical practice and there are a range of other trials and research that are currently happening with integrating HITOP within clinical practice. So the preliminary results of the integration of HITOP into clinical practice tends to show that clinicians prefer HITOP over the DSM when it comes to communicating with patients, when it comes to overall case conceptualization, as well as to treatment planning.

And there have also been a number of guidelines and recommendation documents on how to integrate HITOP into clinical practice that have been published and there are also currently field trials underway to explore the usability, the acceptability, and really the feasibility of HITOP within general clinical practice.

However unfortunately HITOP hasn’t really been meaningfully used within cancer and this is unfortunate as it really has that significant potential to improve research and clinical practice within this population. However for this to happen the HITOP structure must first be confirmed within a cancer survivor population before we can make those inroads into clinical practice and use it within clinical psych-oncology research. So that’s really research to have a look at does the HITOP structure and the HITOP model apply within a cancer survivor population?

Does their structure look the same? So when we understand the structure of psychopathology within cancer survivorship and if this matches that of HITOP we can move forward to field trials and clinical research within this population.

Adrian Pogacian: I noticed that HITOP also went digital under the HITOP digital assessment and tracker instrument. Could you develop this term? It’s I guess on the same foundation as HITOP but what is different on let’s say going digital on HITOP?

Darren Haywood: Absolutely. So the HITOP consortium has a number of different working groups. So for instance there’s a clinical group looking at the integration of HITOP with the clinical and there’s also a HITOP measurement development working group and they have really been part of work to identify existing measurement tools that can be used to measure HITOP domains as well as develop these new purpose measures particularly for HITOP.

So one of these measures is the HITOP DAT or the digital assessments and tracker instruments. So this is a digital tool that uses a collection of previously established mental health measures that are open access, free to access and use for clinicians. So these really are a collection or battery of measures that assess multiple key domains of HITOP through a digital tracker system.

There’s also the HITOP self-report. So this is also available which is a large purpose-built comprehensive self-report tool that provides us really comprehensive and thorough assessments across the HITOP model. So this is a more lengthy measure than the HITOP DAT.

This is 405 items. So it’s something that we could be seeing to be used within the research setting or as a really in-depth clinical tool as well. And there’s a range of different and other purpose-built measures that are currently being developed by HITOP.

And if anyone’s interested in that, a quick Google of HITOP. H-I-T-O-P will bring up their webpage and show all their available resources. They’re all free to access as well.

Adrian Pogacian: Thank you for this explanation. Now I want not to go back to psychooncology because you mentioned that HITOP has a thin relation with cancer. But I want to ask you as a professional and as a researcher that there are a lot of experts from a few decades now that are talking about the paradox of oncology in the way that the clinical oncology and the psychoncology some way or somehow develop in different directions.

And when, for example, the clinical oncology evolved tremendous in the last decades, the psychoncology remains on, let’s say, the same level. So, they didn’t have these outcomes that people need. So, this is the paradox.

One component, it’s very much developed. The other one, it’s not underdeveloped, but not in the same way and not in the same direction. That’s the most important thing that sometimes people don’t know.

They are not going on the same direction. So, obviously, there is a gap here also in research, but mostly in practice. Do you think that, for example, DSM or HITOP, it’s a necessary tool, not useful, but a necessary tool in order to try to reduce this gap?

Darren Haywood: Yes, it’s a very interesting question. So, there have, for years, there’s been these significant discussions around the limitations of this diagnostic approach-based research for the discovery of these etiological factors of psychopathology. So, those are the factors that may cause and maintain psychopathology, as well as treatment approaches.

So, as you can imagine, if these DSM disorders are not consistent things, any consistent association between a particular etiological factor, say, talking about biomedical, whether it be a gene or a particular level of neurotransmitters, for instance, et cetera, and a particular disorder, the connection between those two things is really unlikely because those DSM disorders are not consistent. So, this has really been the case. What we’ve seen historically, there’s never been a one-to-one correspondence of really any etiological factor and any particular disorder.

However, dimensional approaches like that of HITOP offer a very exciting potential for research into these etiological factors of psychopathology, as well as new treatments and supportive care options. So, dimensional approaches, like we said, don’t put individuals into these highly variable and inconsistent categories, but instead use those dimensional domains for assessments. So, this means there’s potential for this more reliable and more valid research within psycho-oncology.

And HITOP can also interface with more biomedical-focused approaches, like the RDoC approaches for future psycho-oncology research. There’s been a range of discussion papers around how those two might intersect and connect. But first, HITOP needs to be structurally validated within cancer survivor populations.

So, I’ll keep going back to that point that that’s the first step we need to make, that does this fit within these cancer survivor populations? And if so, we can move forward into these other approaches and research, including that of linking these more biomedical and traditional assessment approaches with HITOP and psychopathology.

Adrian Pogacian: Thank you very much for this answer and explanation. And now, as a last question, and I would like to ask you as a professional. Recently, I saw an interview with Meg Tyrrell, maybe you know her, she’s a CNN medical correspondent, and she was talking about a prediction based on some statistics, for example, on cancer within masculine population that will explode till 2030.

So, the statistic that she showed us proved that in the future, one of two men will have to do a cancer fighting or battle. With regard to your field of expertise, mental health condition, do you think that let’s say these fields of HITOP or DSM or mental health domain as an entire is ready for such challenges? Or how much would be the impact?

Because life is changing, and also the sub domains have to change itself frequently. How much do you think is this impact on mental health conditions?

Darren Haywood: That is an excellent question. And more people are living from cancer and living longer from cancer, which means more people will require support as well. So, we know that cancer survivors, even long term, are more at risk for experiencing psychopathology.

So, it is extremely important for us to improve our understanding of psychopathology and the way we conceptualize and assess psychopathology and offer treatments and track supportive care strategies as well. And of course, coming back to those diagnostic approaches, if the majority of research is based on these more inconsistent DSM diagnoses only, and the applicability of those diagnoses in the research coming out of that is questionable, we might be in a position where cancer survivors are not receiving optimal care when it comes to psychopathology.

So, I think it’s fundamental at this point for us is to take a step back and think about the way we conceptualize psychopathology in research and in the clinic.

And think about approaches like Hightop and other more empirically based approaches with which we can make strides towards more data-driven understanding of psychopathology and assess treatments and supportive care options as well as assessments to go along with these new modern understandings and make sure we’re in the right place to help support people to provide the most optimal care possible for cancer survivors.

Adrian Pogacian: So, to finish the interview, because we are running out of time, to finish it in a positive way, the awareness and prevention still remain the best options for any patient and psychoeducation remains as a main foundation on the future patients, because I know, you know, it’s difficult to prevent, it’s difficult for people to recognize that might have or might not have.

So, in a society that’s in a turmoil, sometimes we have to think about ourselves and sometimes we have to check ourselves to see if we are going in the right direction or not. Darren, thank you very much for being with us today, very interesting the subject, very interesting the definitions, thank you very much and good luck on your height of development alongside with your colleagues from the university.

Darren Haywood: Thank you for having me. It was lovely to speak about this really important topic.