Greetings! This post may come across as my being bitchy or complaining about something important, especially in the critical advances being made in integrating mental health into the understanding of and care for people living with chronic medical diseases. People who know me well would never describe me as bitchy. Ok, they might.
But, if I get one more fucking paper to review that studies "Anxiety and Depression" in patients living with inflammatory bowel disease (IBD) I'm going to start yelling.
Or maybe I'm yelling now. Into the ether via a MacBook screen and drinking a mug of what's really 2 cups of coffee, let's be honest.
Hear me out.
I've been one of the biggest proponents of incorporating mental health into IBD patient care. Since the early 2000s, my sensei master, Dr. Laurie Keefer, is doing amazing things. First at Northwestern and now in New York at Mount Sinai managing their IBD patient medical home. As is my partner in crime, Dr. Megan Riehl at the University of Michigan who started their behavioral medicine program in GI a few years back. Dr. Sarah Kinsinger, Dr. Sarah Quinton, Dr. Anjali Pandit, Dr. Brad Jerson, Dr. Miranda Van Tilburg, Dr. Jim Kantidakis. I can go on and apologize to those I've left off the list. But blogs are supposed to be short and I'm not very good at that rule.
Disclaimer: I, in no way, speak for any of them.
My point is we, and other mental health providers across the world, have fought hard to make mental health happen in IBD. We've had to fight hard because unfortunately our predecessors in psychiatry kinda fucked things up with the whole "lobotomy for UC" thing back in the 1950s. Patients, patient groups, and even gastroenterologists have been leery of mental health talk up until more recently. Now, it's being embraced more and more and I couldn't be happier.
But.
Doing a study on the presence of "anxiety and depression" in IBD is not novel. If I check the PubMed there are 366 papers on the topic. The good news is we've come from 1 paper in 1983 to 42 published so far in 2018. FORTY TWO!
Circling back to my yelling. Why do we keep doing studies on anxiety and depression in IBD? Surely in 366 papers we've kinda figured this out? We've repeatedly shown depression and anxiety screw things up (symptom experience, treatment adherence, quality of life, social function, etc.). And this isn't unique to IBD. It happens in EVERY disease. Hell, depression and anxiety screw things up for anyone experiencing them. That's why they're, you know, a diagnosis.
So WTF is going on?
1) Why wouldn't some patients with IBD experience anxiety and/or depression, and why wouldn't it be slightly higher than the general population? We're talking around 20-30% of IBD patients having this issue, compared to around 10-15% of people not living with IBD.
2) The reality is more IBD patients experience what we'd call "sub-clinical" anxiety or depression. So if a person showed up in my office with IBD, which they tend to do, and I did a structured clinical interview for the DSM-5, more would only check a few boxes for anxiety or depression than those who I would diagnose as clinically depressed or anxious. And this is what most of us in the GI psychology business see. Repeatedly.
3) The number one mental health diagnosis I use in my clinical practice is "Adjustment Disorder with Anxiety." Which is psychobabble for hey, living with IBD is hard and you feel kinda worried or stressed out about it. You don't have an anxiety disorder.
I'd like to propose that by constantly using the terms "anxiety and depression" in the vast majority IBD mental health research titles, we're doing a disservice to patients.
Important: This is in no way a diss to people with anxiety and depression diagnoses. And I realize to destigmatize a condition we have to talk about it over and over and over. This is to talk about the complexities of incorporating mental health into chronic medical illness, which is still a bit of a mine field.
First, mental health is stigmatized. It just is. I wish like hell it wasn't but we have to operate in the realities of society. So when patients keep seeing clinical terms used it's going to turn them off to talking about their mental health because they don't want to be labeled as "crazy" because their MD will dismiss them, or have a depression diagnosis in their medical record, for example. It'd be cool if clinicians didn't dismiss patients who are depressed or anxious, but it happens. I've seen it and I hear the stories.
Second, the vast majority of patients with IBD aren't depressed or anxious. They might have some symptoms, some difficulty adjusting, all really normal in the context of what the average IBD patient deals with. But they've figured out how to navigate this shit disease (pun intended). Why aren't we talking about that? Oh wait, Dr. Keefer just did in her Nature Review on the role of resilience and Positive Psychology in chronic GI illness (Abstract Here).
Third, there are MANY other areas of mental health concern that IBD patients face. Thankfully these have all been investigated (some more than others), but on a much smaller scale than anxiety and depression. I wrote a review of these last year (Abstract Here). If you'd like a copy of the article, please contact me via Twitter (@OPBMed). These include, and are not limited to,
But, if I get one more fucking paper to review that studies "Anxiety and Depression" in patients living with inflammatory bowel disease (IBD) I'm going to start yelling.
Or maybe I'm yelling now. Into the ether via a MacBook screen and drinking a mug of what's really 2 cups of coffee, let's be honest.
I've been one of the biggest proponents of incorporating mental health into IBD patient care. Since the early 2000s, my sensei master, Dr. Laurie Keefer, is doing amazing things. First at Northwestern and now in New York at Mount Sinai managing their IBD patient medical home. As is my partner in crime, Dr. Megan Riehl at the University of Michigan who started their behavioral medicine program in GI a few years back. Dr. Sarah Kinsinger, Dr. Sarah Quinton, Dr. Anjali Pandit, Dr. Brad Jerson, Dr. Miranda Van Tilburg, Dr. Jim Kantidakis. I can go on and apologize to those I've left off the list. But blogs are supposed to be short and I'm not very good at that rule.
Disclaimer: I, in no way, speak for any of them.
My point is we, and other mental health providers across the world, have fought hard to make mental health happen in IBD. We've had to fight hard because unfortunately our predecessors in psychiatry kinda fucked things up with the whole "lobotomy for UC" thing back in the 1950s. Patients, patient groups, and even gastroenterologists have been leery of mental health talk up until more recently. Now, it's being embraced more and more and I couldn't be happier.
But.
Doing a study on the presence of "anxiety and depression" in IBD is not novel. If I check the PubMed there are 366 papers on the topic. The good news is we've come from 1 paper in 1983 to 42 published so far in 2018. FORTY TWO!
Image Source: Groundhog Day, Columbia Pictures (Meme-ified) |
So WTF is going on?
1) Why wouldn't some patients with IBD experience anxiety and/or depression, and why wouldn't it be slightly higher than the general population? We're talking around 20-30% of IBD patients having this issue, compared to around 10-15% of people not living with IBD.
2) The reality is more IBD patients experience what we'd call "sub-clinical" anxiety or depression. So if a person showed up in my office with IBD, which they tend to do, and I did a structured clinical interview for the DSM-5, more would only check a few boxes for anxiety or depression than those who I would diagnose as clinically depressed or anxious. And this is what most of us in the GI psychology business see. Repeatedly.
3) The number one mental health diagnosis I use in my clinical practice is "Adjustment Disorder with Anxiety." Which is psychobabble for hey, living with IBD is hard and you feel kinda worried or stressed out about it. You don't have an anxiety disorder.
I'd like to propose that by constantly using the terms "anxiety and depression" in the vast majority IBD mental health research titles, we're doing a disservice to patients.
Important: This is in no way a diss to people with anxiety and depression diagnoses. And I realize to destigmatize a condition we have to talk about it over and over and over. This is to talk about the complexities of incorporating mental health into chronic medical illness, which is still a bit of a mine field.
First, mental health is stigmatized. It just is. I wish like hell it wasn't but we have to operate in the realities of society. So when patients keep seeing clinical terms used it's going to turn them off to talking about their mental health because they don't want to be labeled as "crazy" because their MD will dismiss them, or have a depression diagnosis in their medical record, for example. It'd be cool if clinicians didn't dismiss patients who are depressed or anxious, but it happens. I've seen it and I hear the stories.
Second, the vast majority of patients with IBD aren't depressed or anxious. They might have some symptoms, some difficulty adjusting, all really normal in the context of what the average IBD patient deals with. But they've figured out how to navigate this shit disease (pun intended). Why aren't we talking about that? Oh wait, Dr. Keefer just did in her Nature Review on the role of resilience and Positive Psychology in chronic GI illness (Abstract Here).
Third, there are MANY other areas of mental health concern that IBD patients face. Thankfully these have all been investigated (some more than others), but on a much smaller scale than anxiety and depression. I wrote a review of these last year (Abstract Here). If you'd like a copy of the article, please contact me via Twitter (@OPBMed). These include, and are not limited to,
- Eating and food-related concerns, including disordered eating habits
- Sleep issues
- Fatigue
- Trauma, post-traumatic stress or post-traumatic stress disorder due to illness experiences
- Concerns about treatments
- Body image
- Intimacy and sexual health issues
- Pregnancy and breastfeeding
- Infertility and child bearing concerns in general
- Stigma
I should add, there's barely any research in racial and ethnic minorities or patients who identify as LGBTQ.
So, to any of my peers reading this, consider it a free list of research ideas to move from the "anxiety and depression" Groundhog Day-esque feel of IBD mental health research.
So, to any of my peers reading this, consider it a free list of research ideas to move from the "anxiety and depression" Groundhog Day-esque feel of IBD mental health research.
To my fellow IBD patients. We're listening and we continue to push forward with really understanding the positives, negatives, and all the shit in between for life with IBD.
--T2