[00:30]
Hello, I’m Dr. Megan Riehl and welcome to IBDIQ, part of The IBD Project by Takeda, where we're coming together to help enhance expertise in IBD care—right from the start.
Thank you for joining me in this discussion of the emotional impact of IBD.
During this presentation, we will explore the emotional challenges faced by patients living with IBD, and explore the influence of social determinants of health and diversity on the IBD patient journey.
We'll also discuss the challenges encountered by family members and caregivers of those with IBD. Lastly, we'll highlight resources that focus on emotional well-being and community support, and raise awareness to help those impacted by IBD.
[01:12]
There is so much more to living with IBD than what is immediately obvious.1
On the surface, patients with IBD only deal with certain challenges, such as unanticipated side effects of their medications, body image concerns, and burden of taking medication.2
However, many issues aren’t seen at first glance. People with IBD may deal with anxiety related to medications, unanticipated hospitalizations, fatigue, and dietary restriction concerns.3
Additionally, people with IBD may also have to deal with the way IBD impacts their emotional health, finances, relationships, work, and caregivers.3
Now, let’s take a closer look at the profound bidirectional effects of IBD and mental health.
IBD is associated with high levels of anxiety, depression, and insomnia symptoms. These levels frequently exceed what is seen in the general population.4-6
[02:09]
In a systematic review and meta-analysis conducted to assess the prevalence of anxiety or depression symptoms in patients with IBD, 32% had anxiety symptoms across 58 studies including 18,915 patients, and 25% had depression symptoms across 75 studies including 29,438 patients.4
A survey study of 312 individuals with IBD from an academic center in New Hampshire revealed that 50% met the clinical threshold for insomnia disorder.5 Those with insomnia expressed heightened concern about sleep issues, increased feelings of helplessness, and engaged in behaviors that worsened insomnia.5
As stated, there is a bidirectional effect of IBD and mental health and it has been shown that depression and anxiety symptom rates may be higher with a disease flare. 7
This is why it's so important that we address the impact of IBD and mental health.8
[03:12]
Recently, trauma has emerged as a mental health concern for patients with IBD.
Dr Tiffany Taft's research highlights the importance of addressing trauma in IBD. In an observational survey study that included 797 patients with IBD, one in four patients with IBD reported significant post-traumatic stress symptoms, including reliving past traumas and increased arousal.9 Certain demographic groups, including those with less than a college education, patients with Hispanic ethnicity, and women are at a higher risk for post-traumatic stress.9
Patients with IBD-related post-traumatic stress are more likely to be hospitalized, to have had more severe symptoms, and to not be in remission.9
And so these data suggest that it's really important that we ask questions about a patient's trauma history and make sure that we connect them with appropriate specialists in order to manage symptoms of post-traumatic stress related to IBD.
[04:13]
As shown in this work done by Taft and colleagues, certain patient demographics may experience more mental health burdens than others.9 That's why when we look at the mental health concerns of patients with IBD, we may also want to look at issues of diversity and equity, as well as social barriers. These issues can have a profound impact on a person's mental health.
In a 2015 National Health Interview Survey of 454 adults with IBD in the US that analyzed the prevalence of food insecurity and/or a lack of social support, 12% of respondents experienced both food insecurity and a lack of social support.10
A larger study of over 9,000 Canadian patients with IBD from 1995 to 2018 revealed that lower socioeconomic status was associated with worse outcomes in IBD, such as higher outpatient physician visits, hospitalizations, narcotic use, and psychotropic medication use.11
[05:17]
An added layer of complexity to studies exploring the impact of social determinants of health is that underrepresented minorities historically have lower participation in censuses and national surveys.12,13
While the impact of social determinants of health remains underexplored in IBD, recent findings shed some light on the topic. In a survey study of 316 patients with IBD in South Florida, there was a disproportionately higher impact of social determinants of health among Hispanics and non-Hispanic Black individuals (as compared with other races).14
Greater social barriers were associated with 1.5 times greater likelihood of depressive symptoms and lower reported use of certain IBD medications.14
There is an urgent need for studies that identify strategies to mitigate social barriers to care in IBD.
[06:09]
Some of the ways that we can holistically approach patient care is to normalize discussions about mental health.15
Patients with IBD often emphasize the significance of advocacy and support in ensuring their mental health needs, underscoring the importance of feeling validated and understood. This can allow patients the opportunity to acknowledge whether they need more support.16
In addition, I would also advocate for discussing how systemic barriers may be impacting the patients we work with.15
When it comes to screening, it is recommended that we dive a little deeper and screen for anxiety and depression.15,17
Emotional health screening is particularly important when there has been a change in a patient’s disease status; for instance, a recent hospitalization, or major changes in lifestyle.18
[06:58]
So, what are some models of care when considering mental health? This slide created by Dr Jessiy Salwen- Deremer looks at what happens when patients are not asked about their emotional health. It then guides us toward a care model where patients have the opportunity to be seen by a multidisciplinary team. This can include a psychologist, social worker, or mental health care provider.
In my clinical experience, if a patient reports increased anxiety or depression, it may not be helpful to say something vague like, "you should see a mental health provider.”
It is more beneficial if we can integrate effective psychosocial assessment tools and implement appropriate interventions for patients with IBD in a gastroenterology IBD practice.19
While we recognize that there are significant mental healthcare access issues, ideally, integrating psychosocial care in the clinic would be beneficial to patients.19
There is also an opportunity to advocate for behavioral health specialists in any growing IBD program or practice.19
Addressing psychosocial challenges allows a patient with IBD to discuss and address their “whole health.”19
This is the gold standard that we are working towards—incorporating behavioral and mental health providers into the holistic management of IBD.
[08:17]
When making a referral to a mental health provider who could help manage gastrointestinal, or GI issues, we want to recognize that a GI-focused psychologist or mental health provider is going to target factors related to the GI diagnosis. Therefore, the approach and skill set for mental health support is different for IBD compared to general mental health.20 Mental health strategies for IBD will focus on helping patients learn behavioral changes to increase their coping skills and resilience and better manage their GI condition. This work tends to be short-term, and skills based.20
Some patients with IBD may already have a general mental health provider to address their psychosocial concerns. A GI mental health provider can create a treatment plan that may include treating anxiety and depressive symptoms; however, treatment interventions primarily focus on behavioral skills to reduce physical symptoms and enhance coping and resilience related to the management of IBD.
While there may be some variations across states, most health insurance plans cover GI behavioral health services.21
[09:24]
Having an open dialogue about GI mental health referrals is important to reduce mental health stigma and validate how a patient is feeling. Let's go over some conversation starters with your patients.
You can try saying something like, “I recognize that your symptoms and pain are real. I do not believe your symptoms are in your head. GI behavioral health services can aid in addressing brain-gut dysregulation that can drive bothersome symptoms. We can also work on developing coping strategies and lifestyle behaviors that will help with your overall management of life with IBD.”
There are some additional factors that we might want to highlight for our patients as we have these conversations about mental health.
For instance, stress and mood have a significant impact on disease course and can lead to more flares, surgeries, and poor quality of life.22
One of the factors that I like to point out is psychological resilience, which is defined as the capacity to rebound or overcome adversity, leading to positive outcomes even in the face of challenging events or circumstances.23
[10:30]
By exploring different brain-gut therapies, patients can learn strategies to enhance their resilience and promote better mental health.24
Resilience is associated with higher mental and physical quality of life, as well as the effective management of the disease over the long term.24
In a single-center study of 229 patients with IBD who completed a resilience questionnaire, we see that after an IBD stressful event, a patient with higher resilience is more able to “bounce back” and adapt to the demands of the disease, which can lead to lower disease activity and better quality of life. A patient with lower resilience may be more prone to developing anxiety or depression in response to disease demands, which can lead to higher disease activity and a poor quality of life.24
Another example of how a GI mental health provider can support the management of IBD is by addressing barriers to maintaining a healthy lifestyle, particularly regarding exercise.
[11:32]
Research has underscored the beneficial effects of physical activity on the psychological well-being of individuals with IBD. In a cross-sectional study of 2,052 patients with ulcerative colitis (or UC) examining the relationship between physical activity and UC-related health outcomes, higher levels of physical activity were associated with reduced anxiety symptoms, depression symptoms, and fatigue. Additionally, increased physical activity correlated with enhanced quality of life, improved sleep, and greater social satisfaction among patients with UC.25
Also, in a survey study of 176 patients with Crohn’s disease, those with a higher physical activity level had lower disease activity.26 While the same association was not seen in patients with ulcerative colitis, physical activity had a beneficial effect in the overall patient group with IBD.
[12:32]
However, it is essential to acknowledge and address the barriers to exercise in patients with IBD such as embarrassment relating to symptoms, abdominal pain, fatigue, joint pain, and fear of fecal incontinence.27
The inability to engage in regular exercise due to these barriers can exacerbate feelings of stress, anxiety, fatigue, and depression among patients with IBD, impacting their overall quality of life and disease management.27 This makes it very important to have these conversations about physical activity with patients and remind them of the potential benefits to both their physical and mental health.
Overlapping irritable bowel syndrome (or IBS) and IBD is quite prevalent and may be almost 60% in patients with Crohn’s disease and about 39% in patients with ulcerative colitis.28
This gives us the opportunity to acknowledge the connection with our patients. It also provides more support for using evidence-based brain-gut behavioral therapies in IBD management.29
[13:40]
Some of the psychotherapies used for patients with IBD include cognitive behavioral therapy, gut-directed hypnotherapy, and self-management therapies. Incorporating these evidence-based therapies has been shown to help with both the physical impact of the disease and mental health related to IBD.29
Cognitive behavioral therapy addresses IBD-related anxiety and depression symptoms, medical adherence, quality of life, and coping skills.30
Gut-directed hypnotherapy is an evidence-based intervention that has been used for IBS.29 In IBD, research is less substantial, though one prospective, single-site randomized clinical study with 54 adult patients with ulcerative colitis found that gut-directed hypnotherapy was shown to prolong clinical remission by about 2.5 months in patients with quiescent ulcerative colitis.31
[14:37]
I often incorporate this into my treatment plan as a relaxation strategy with positive results.
Behavioral self-management programs enhance patients' self-efficacy in managing gastrointestinal symptoms, psychological well-being, and quality of life for disorders of gut-brain interaction, or DGBIs.29 These programs focus on reducing disease-related anxiety, correcting common misconceptions about DGBIs, and increasing awareness of symptom triggers such as diet and stress, ultimately promoting improved self-confidence and self-care.29
In the last few minutes, I will discuss care burden and support in chronic diseases, including IBD. Caregivers experience psychological, social, and economic stress, as well as disruptions in their daily lives when providing care to patients with chronic diseases.32
Demographic factors can impact the magnitude of care burden. For instance, a 2023 study of 172 caregivers showed that income status was a strong predictor of care burden.33
[15:48]
An integrative review of research published from January 2000 to October 2019 identified four key effects on caregivers providing support to an individual with IBD—biopsychosocial, daily life activities, physical health, and financial effects.32
There are numerous biopsychosocial effects, which can impact the individual caregiver as well as other family members.32
Daily life activities are impacted because a caregiver has to take time away from work and their personal life to manage patient care.32
The physical health effects to a caregiver may manifest as burnout, which can be accompanied by persistent physical fatigue syndrome, energy loss, and high physical stress.32
Financial challenges may occur if a caregiver has to provide living and treatment costs for the patient.32
Together, these underscore the importance of providing support for caregivers of patients with IBD.
[16:47]
As we have discussed, mental and emotional health are key for patients with IBD. There are a wide range of support tools and resources to aid patients and their caregivers throughout their journey. Please refer to the resource list associated with this learning chapter.
My key takeaways are that IBD is a complex disease that requires multidisciplinary care. It is important that we take into consideration emotional health, diversity, and social determinants of health.3,14
Untreated mental health issues can exacerbate symptoms of IBD and make management more difficult.24
So we need to normalize discussions about emotional health and the impact of IBD on the patient and their caregivers.15
And finally, support is crucial. It is important to have resources available to share with patients and their caregivers.
Thank you for your interest and for spending some time with IBDIQ today to help adapt to the evolving care needs of all patients with IBD.
