Topic outline

  • Psychosocial and Behavioral Aspects of IBD Care

    In this module, we’ll examine the psychological side of IBD, highlighting its emotional impact on patients and care partners, the complex relationship between physical and mental symptoms, and the necessity of multidisciplinary care. We’ll also emphasize the importance of comprehensive and proactive mental health strategies to support patients’ well-being.

  • In this chapter, we’ll discuss the prevalence and impact of psychological disorders associated with IBD and showcase multidisciplinary care models. We’ll underscore the extent to which IBD can impact the psychosocial well-being of patients while emphasizing the pivotal role of multidisciplinary teamwork in supporting patients’ whole-person care throughout their journey.

    Presented by Stephen Lupe, PsyD

    Date recorded: May 2024

    Learn more
    • [00:30]

      Hello, I’m Dr Stephen Lupe, 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.

      Today, we are going to talk about the importance of psychological health in the management of inflammatory bowel disease, or IBD. 

      We will also explore the intricate relationship between IBD and psychosocial functioning, highlighting the interaction between these and their mutual influence.

      Additionally, we will review the different care models for addressing psychosocial care among patients with IBD, including the role of the multidisciplinary care team.

      By the end, you will have learned about ways to incorporate psychosocial care into IBD management and develop an appreciation for whole-person care.

      [01:25]

      First, let’s discuss the term psychosocial. Psychosocial has been defined as psychological symptoms, illness perception, coping, environmental stress, health behaviors, and social, racial, and ethnic factors that can impact disease.1

      Psychosocial care encompasses the management of the domains we just discussed, and includes providing emotional support and advocacy for patients.1

      Mental health support and support groups are an important element of IBD care, as evidenced by thematic analysis conducted in a scoping review of 75 articles. In this review, the top 3 needs for patients with IBD were patient education, psychosocial support, and support groups.2

      [02:16]

      So why talk about psychosocial factors in IBD in the first place? There is a potential bidirectional relationship between depression, anxiety, and IBD.3 It is important that we address concerns like depression and anxiety symptoms because they can affect both quality of life and clinical outcomes.4-6

      IBD has also been associated with an increased risk of suicide, according to a 2018 meta-analysis of 7 studies from Western, developed countries.7

      If you or someone you know is experiencing a mental health crisis, please reach out for help. Call 911, if someone is in immediate danger. Call 988, to get connected to the National Suicide Prevention Lifeline. Text the Crisis Text Line to get 24/7 help.

      [03:03]

      Considering the potential bidirectional association between depression, anxiety, and IBD, it is worth noting that stress may also influence IBD disease course.3 A potential source of stress for people who are diagnosed with IBD is trauma; this is evidenced by a study that included 132 adult patients with IBD [89 with Crohn’s disease (or CD) and 43 with ulcerative colitis (or UC)] surveyed about post-traumatic stress symptoms.8

      In this study, there was a moderate correlation between post-traumatic stress severity and symptom severity in all patients.8 Patients with IBD who experienced a more severe disease course, involving more surgeries and/or more hospitalizations, reported more post-traumatic stress.

      [03:55]

      In a different, prospective, observational study of 325 hospitalized patients in the largest IBD referral center in Southwest China, patients with anxiety and depression symptoms had a significantly higher incidence of poor outcomes like hospitalization, surgery, or death compared to patients without.4

      Among patients with IBD there is a high prevalence of anxiety, depression, and impaired quality of life.5,6,9,10 Patients with IBD may be more prone to fatigue and may suffer from poor sleep, which is another factor that is strongly associated with poor health-related quality of life.11

      Navigating relationships can present unique challenges for patients with IBD. Sexual dysfunction can be an issue for patients with IBD, potentially linked to the presence of moderate-to-severe stress and severe depressive symptoms.12

      [04:51]

      Beyond sexual dysfunction, patients may have concerns about intimacy in their relationships. What does intimacy look like? How can I perform intimate acts? How can I explain to my partner what I am feeling? I’ve had patients tell me, “You are the first person who has ever asked me if IBD has affected intimate relations with my partner.” I have found that conversation and education can help on this subject. I try to provide opportunities for the partners to learn more about UC or CD and the impact it can have on their loved one.

      Workplace issues are another potential source of psychosocial distress. Patients might think to themselves, how do I show up for work? How do I continue going if I have to go the bathroom all the time?

      Patients with IBD may face challenges in the workplace such as meeting work performance demands as well as managing cognitive symptoms, their work environment (such as access to bathrooms etc.), and social implications (like attending work-related social engagements).13

      [06:00]

      A 2015 study of a community-based registry from one hospital evaluated IBD-related work disability in 293 patients in Spain.14

      Among patients with disability, more than two-thirds (or 69%) attributed their disability to IBD.14 Time since diagnosis was the strongest predictor of the degree of disability, which was clearly shown to increase with time.

      To help patients diagnosed with IBD continue to engage in work, workplace accommodations can be made. Accommodations such as working from home, flexible hours, easy access to a toilet, and time for medical appointments can often make it easier for these patients to work.15

      Just as the symptoms of IBD can adversely affect psychosocial well-being, the dietary restrictions patients implement to limit these symptoms can also have a negative impact on psychosocial health.16,17

      [07:02]

      Diet and food restrictions are a big concern for my patients and I have seen the impact this can have on my patients’ physical and mental health. Patients might get very frustrated about foods they can’t eat.18 I’ve had patients say, “I eat white rice, potatoes, and chicken and that’s it. Because those are the foods that don’t hurt my stomach.17 How can I go out to a restaurant if I’m on a restricted diet?” I work through these things with my patients because dietary restrictions may increase social anxiety or limit social engagement, and may also result in malnutrition.17

      Based on what we discussed so far, it’s no surprise that those with IBD may struggle with low self-esteem, anxiety, and depressed moods.16

      [07:54]

      And as a large, retrospective cohort study of nearly 8,500 patients with IBD in Canada demonstrated, being diagnosed with psychiatric comorbidities such as anxiety, depression, or bipolar disorder was associated with at least 3.7 more physician visits annually and 1.5 more days in the hospital per year relative to matched controls.19

      The many faceted impacts of IBD highlight the importance of working with a multidisciplinary team to ensure comprehensive management of the disease.1,20 Supporting a patient with food concerns is a perfect example of where we can work together as a multifunctional team. The physician can test for nutrient deficiency, a dietitian can talk to the patient about food choices, and a psychologist can speak about thoughts and fears related to food.

      [08:50]

      We’ve discussed how IBD is a chronic condition that impacts many aspects of patients’ lives.1 As part of the multidisciplinary IBD care team, how do we make sure that the patient is getting the most effective care possible? Including psychosocial care in the long-term treatment plan can help achieve this objective.

      Many patients who are diagnosed with IBD see a gastroenterologist as their primary provider of care.1 Specialists like gastroenterologists may be unfamiliar with behavioral health resources or lack the support to assess the psychosocial factors that affect IBD, even when patients share concerns about psychosocial comorbidities.

      [09:40]

      In a 2023 survey of 117 gastroenterologists conducted by the American Gastroenterological Association (or AGA), respondents reported that patients’ mental health was adequately addressed in their practice and their focus was on physical symptoms of IBD.21 However, results from a companion survey of more than 1,000 patients with IBD indicated that mental health issues persist among the IBD population with 36% and 35% of patients reporting a diagnosis of anxiety and depression, respectively.

      Many gastroenterologists are unfamiliar with behavioral health resources, and we need to talk about these things.1 By adequately addressing comorbid mental health conditions and psychosocial challenges, patients may have improved health outcomes. Incorporating psychosocial care into IBD practice is an important step toward whole-person care.

      [10:46]

      Now that we have explored the extent to which IBD can impact psychosocial well-being, let's pivot our focus to care models that incorporate psychosocial well-being, including different integrated care models that utilize multidisciplinary teams.

      Globally, healthcare centers have moved to using the integrated model of care to facilitate best-practice management for IBD.22 The integrated care model employs a multidisciplinary team (or MDT), consisting of various healthcare practitioners working together to help deliver comprehensive care for patients with IBD.16

      [11:29]

      The ideal integrated model for IBD care is a team led by a gastroenterologist and includes a colorectal surgeon, IBD nurse specialist, psychologist, and a dietitian.16 In the ideal world, according to an international survey, an endoscopist, pathologist, radiologist, and pharmacist with a special interest in IBD would also be core members of the team. I would also include my colleagues in pelvic floor physical therapy as part of this team. 

      Ancillary members may include a dermatologist, psychiatrist, social worker, rheumatologist, ophthalmologist, and obstetrician, among others.16 IBD care delivered by a gastroenterologist-led multidisciplinary team may be more effective than the conventional patient-specialist model, which in IBD would involve only a gastroenterologist.

      [12:32]

      In the medical home model, the center of the healthcare universe is the patient, not the provider.23 The medical home model was developed in the United States during the era of healthcare reform and the Affordable Care Act.16,23 Medical homes are unlike traditional integrated care models for IBD that are built around the healthcare team, are typically at academic centers, and require collaboration with hospitals and medical centers. A medical home is designed to deliver comprehensive, patient-centered, team-based, and accessible care to specific patient types in the primary care setting.

      [13:15]

      Specialty medical homes are medical homes where the specialist coordinates all aspects of the patient’s care, much like a primary care doctor.16 A specialty medical home involves the following characteristics: A gastroenterologist who serves as the principal care provider24; collaboration with an insurance company or payor to improve value and reduce cost around the patient16; a team of providers under the direction of the principal care provider who, in addition to providing IBD care, manages the whole patient23; and incorporation of technology such as remote monitoring of symptoms and patient management technology.24

      [13:59]

      The specialty medical home model is being used by the University of Pittsburgh Medical Center.25 Additionally, an institution in Louisiana has proposed adding a condition-focused primary care physician (or PCP) to the specialty medical home model to manage and treat comorbid conditions among patients with IBD. The authors suggest that adding a condition-focused PCP may bridge the divide between the traditional patient-centered model and the specialty medical home model.26

      Sometimes there can be confusion between the traditional medical home model and the specialty medical home model. To clarify the difference, in a traditional medical home model, the gastroenterologist is analogous to a consultant who works among other providers in the system, whereas in the specialty medical home model, gastroenterologists act as principal care providers.23

      [15:00]

      Now that we’ve gone through the models, I’d like to share how integrated care works at my institution, specifically how we utilize the specialty medical home model of care for IBD. Patients come in to see a gastroenterologist. As part of their visit, they may be sent to a psychologist like me, or one of our dietitians. We all see the patient.

      When we first started with the specialty medical home model, it was exciting. We all stood in the hallway together. I would take my laptop and run into the room as soon as the doctor motioned me in. Our dietitian would be waiting in another room. Sometimes we had 3 rooms going.

      [15:43]

      Then COVID hit and psychosocial care moved online. These days, I am in the office 4 days a week, providing more virtual care than before the pandemic. We do ‘warm handoffs,’ which is when a physician is working in a room and says, “Hey, I need you to come talk to this patient. Can you do that?”

      The gastrointestinal behavioral health providers at my clinic do short-term treatment, which is often defined to be between 10 and 20 sessions — I typically do 6 to 8 sessions initially.27 Most patients are seen either weekly or every other week for those 6-8 sessions, and in those sessions we focus on one specific problem.

      [16:28]

      There is ongoing care if the patient is part of the clinic. I tend not to formally discharge anyone. I’ve had patients come see me after they moved to another area, which is okay for me.

      As mentioned, during the COVID-19 pandemic, we switched to telepsychology, which has been a blessing and a curse in my opinion. It opens care to a lot more people, but I don’t get to be with my team 100% of the time anymore. The blessing is that I can see a patient in rural Indiana or the hills of West Virginia, and they are able to receive services from a licensed professional.

      [17:08]

      For psychologists, PSYPACT (or the Psychology Interjurisdictional Compact) is an interstate compact that grants eligible psychologists the authority to practice telepsychology across state boundaries.28 With this tool, I can see people in 41 states and growing.29 As long as they’ve got internet, I can see them. And I can see them regularly. This has been especially helpful for patients who traditionally did not have access to behavioral health such as rural populations.

      [17:43]

      Let’s review what we’ve learned today.

      As discussed, there is a need for psychosocial care among patients with IBD.10

      Anxiety and depression can negatively impact quality of life in patients with IBD.5,6,9,10 Additionally, we discussed how IBD can affect other aspects of patients' lives like their relationships, work, and diet.12,13,18

      There are several care models that take into account the importance of psychosocial care. In addition to a gastroenterologist, an integrated care team for IBD management should include healthcare professionals of other disciplines.16,30

      Medical home care models for IBD focus on the patient as the center of the healthcare universe, not the provider.23

      In conclusion, incorporating psychosocial care into the management of IBD may bring us closer to attaining whole-person care for IBD.

      [18:49]

      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.