Managing Patients with Crohn’s Disease: Challenges and Solutions
Summary:
Managing patients with a chronic condition like Crohn’s disease requires a multifaceted approach that takes into account not just the medical aspects of the disease, but also the psychological and emotional toll it can exact on patients and their families. In this article, Tauseef Ali, MD, discusses some of the major challenges faced by Crohn’s disease patients, including the difficulty of navigating the healthcare system and managing symptoms, as well as the importance of providing patient education, developing an effective multidisciplinary team, and fighting insurance battles. He emphasizes that proper education about the disease, its pathogenesis, and treatment options is critical to achieving positive outcomes for patients, as is building trust and rapport with healthcare providers. Ultimately, an approach that is patient-centered, empathetic, and collaborative is key to improving the lives of those living with Crohn’s disease.
Introduction:
Managing Crohn’s disease is a significant challenge for both patients and healthcare professionals alike, as it is a chronic condition that requires ongoing treatment and monitoring. In this article, we will explore some of the major challenges faced by Crohn’s disease patients, as well as the solutions healthcare providers can employ to improve patient outcomes.
Understanding the Disease:
One of the main challenges for Crohn’s disease patients is understanding the disease itself and its potential management options. Patients can be overwhelmed by the amount of information available online, which can be conflicting and confusing. Therefore, it is essential to provide patient education, particularly in Crohn’s disease. Patients may deny having the disease, which presents an additional challenge as healthcare providers must spend more time explaining the disease and its management options. Patients often don’t understand that the basic problem is inflammation in the intestine, which must be controlled with timely and effective therapies to prevent further damage. Education is key to relieving patient fears, addressing concerns, and helping them through the journey of living with Crohn’s disease.
Multidisciplinary Approach:
Effective management of Crohn’s disease requires a multidisciplinary team approach. Healthcare professionals should build a team of professionals around them, including nursing and support staff who can help patients navigate treatment options and plan for their care. A good team may include a biologic coordinator or pharmacist, a dietitian, a mental health therapist or counselor, and other personnel such as expert colorectal surgeons, radiologists, pathologists, and endoscopy personnel. This approach allows healthcare providers to get the best possible outcomes for their patients.
Fighting the Insurance Battles:
Patients with Crohn’s disease often face challenges obtaining the necessary tests and treatment from insurance companies. Healthcare providers are aware of drugs that could help patients, but they are often expensive, and insurers may require more hoops to get permission to use them. Additionally, insurance companies are known for initially denying requests for treatment, which can delay patient care and potentially harm them. This presents an additional frustration for healthcare providers and patients alike.
Talking to the Doctor:
Patients should be active participants in their treatment plan since educated patients can ask their healthcare providers about the goals of treatment, the benefits, and risks of taking the medication. This leads to shared decision-making, which allows healthcare providers and patients to work together to find the best possible outcomes.
Conclusion:
Managing Crohn’s disease is a challenging and complex process. It requires a patient-centered, empathetic, and collaborative approach, which encompasses healthcare professionals and multidisciplinary teams. By educating patients, developing effective multidisciplinary teams, and fighting insurance battles, healthcare providers can maximize positive outcomes for patients and improve their quality of life.
Additional Piece:
While the management of Crohn’s disease may pose numerous challenges, it can also be an opportunity to build lasting relationships between healthcare providers and patients. When healthcare providers take the time to educate patients about the disease, its management options, and the potential outcomes, they build trust and rapport with their patients. This approach fosters a sense of partnership, empowering patients to take an active role in managing their health. It also leads to better communication, which helps to nip potential problems in the bud before they become more significant issues. Healthcare providers who are patient-centered, empathetic, and collaborative can help patients navigate the ups and downs of living with Crohn’s disease. Ultimately, the success of this approach is visible in the significant progress made in Crohn’s disease management over the past few decades. By staying up-to-date with the latest research and best practices and remaining dedicated to patient education, healthcare providers can continue to drive positive change in the lives of those living with Crohn’s disease.
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By Tauseef Ali, MD as told to Marijke Vroomen Durning, RN
Managing patients with a chronic condition such as Crohn’s disease is a professional and personal challenge. I have been working with this population and people with other GI disorders for over 15 years. But as challenging as the job can be, it is rewarding when I see a patient with chronic and debilitating symptoms improve. I see that with timely and effective therapies, their intestines heal, their symptoms improve and they can resume their activities. There is great satisfaction in seeing your quality of life improve, it is priceless.
However, we cannot underestimate the frustrations many of my patients have on a daily basis as they navigate their disease and the health care system to get help for their Crohn’s disease.
Main frustrations for people with Crohn’s disease
Over the years I have learned that there are multiple levels of frustration for Crohn’s disease patients. Some of the main issues are understanding the disease process and management options. With so much information online, much of it conflicting, patients can often feel overwhelmed, confused and discouraged. Add to that the prolonged amount of time patients must take their medications and the risk of side effects, and perhaps the trial and error that goes into finding the right drug or combination of drugs, and it’s understandable how this disease can be so overwhelming .
So I think the most important thing is to provide patient education. Of course, this is critical in any chronic disease, but it is vital in Crohn’s disease. In my book, Crohn’s and colitis for dummies, I addressed many of the issues facing this population. The book helps readers actively recognize the symptoms of Crohn’s disease and explains the diagnostic procedures doctors use to identify this disease. It also describes how the whole body is affected by Crohn’s disease and the potential dangers of leaving the disease untreated. She also provides practical advice on treatment options, pregnancy, surgery, and travel-related issues, and addresses some of the myths associated with this disease.
I think one of the things that surprised me the most when I started working in the field was how some Crohn’s disease patients continue to deny their disease even after very thorough investigation. That becomes an additional challenge because we have invested their time and we have explained everything about why they have inflammation and how we should control this inflammation. And then at the end of the day, they go back online already and come up with a plan that isn’t even medically appropriate and could even be dangerous for them.
It is very important that we educate our patients not only about the pathogenesis of Crohn’s disease and the goals of treatment, but also about other aspects of disease management, such as diet, limitations and side effects of medical therapy, what to expect regarding disease progression and surgery. We also need to develop a better understanding of management plans. For example, many patients feel that if the diarrhea and pain improve, that is the end of treatment and they can gradually stop or reduce their medications.
The basic problem is inflammation in the intestine, and if you don’t take or stop taking your treatments, even if you feel better, the inflammation will continue and could cause more damage to your intestines. If we don’t control inflammation, it can lead to complications such as structural damage to the intestine. Due to persistent inflammation, patients can develop precancerous lesions that can lead to cancer in the intestine. Patients may need surgery if there are strictures or obstructions. It is essential that they control inflammation. So one of our most important jobs is to educate patients, alleviate their fears, give them the right information, make sure we address their concerns, and then help them by holding hands along the journey. But we can not do it alone.
Treatment of Crohn’s disease requires a multidisciplinary approach
As a physician, I am the one who diagnoses, provides evaluation, and creates treatment plans for patients. But I need a healthcare team around me to support them. A good team includes nursing and support staff who can help patients navigate this journey. You will most likely need staff (such as a biologic coordinator or pharmacist) to help them get their medications approved in a timely manner. You may need a dietitian so you can get good dietary advice.
You may also need a mental health therapist or counselor to help alleviate and address your anxiety. Stress or depression is frequently associated with patients with Crohn’s disease. Many patients cannot have a good quality of life when it comes to being social. They never know when their symptoms are going to flare up. It’s like a roller coaster for some of them. This can affect their relationships, prevent them from completing their education, or cause problems with job performance. This disease affects them in many ways besides physical discomfort.
And then you need other personnel, such as surgeons, expert colorectal surgeons, radiologists, pathologists, and endoscopy personnel—all must be part of this multidisciplinary team.
Fighting the insurance battles
In the United States, patients with Crohn’s disease not only have to deal with their medical condition and all that it entails, but they also often have to fight with insurance companies to obtain the necessary tests and treatment. That adds to not only their frustration, but ours as well. We know we have drugs that can help patients, but they are not cheap, and our patients often have to go through hoops to get permission to use them.
Initial requests for treatment are often denied and we must come up with Plan B or Plan C, which may be suboptimal because we know our original choice is better. But patients are unable to access them due to insurance denial or cost issues. Even if we do get the original drug approved, the delay itself could be harmful.
Help patients talk to their doctor
Educated patients help themselves. There’s no question about that, so it’s critical that patients ask questions when starting a new treatment for Crohn’s disease. They should not only ask about the goals of treatment and the benefits they will get from taking the medicine, but also about the risks of taking it. But they should also be aware of the risks they will run by not taking this medicine. This discussion allows patients and their doctors to come to a very good shared decision-making, as a team.
https://www.webmd.com/ibd-crohns-disease/crohns-disease/features/crohns-lessons-learned?src=RSS_PUBLIC
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