IBD Remission Communication To Promote Patient Comprehension
Overview
Previous research indicates that patients with inflammatory bowel disease (IBD) often have a different understanding of remission compared to healthcare professionals, which may impact their expectations and treatment outcomes. This study aimed to explore three key areas: (1) patients’ current understanding of remission, (2) any barriers they face in communicating about remission with healthcare providers, and (3) the potential for enhancing educational materials to better prepare patients for discussions about remission and treatment goals.
To gather insights, a web-based survey was administered to adult IBD patients in the United States, involving a total of 1,495 participants. The survey also included an educational experiment where patients were randomly assigned one of three improved versions of existing educational content.
The findings revealed that while the majority of patients (67%) believe that remission in IBD is achievable, there was considerable variation in how they define it. The most common definitions were “my symptoms are reduced” (22%) and “I am no longer experiencing any symptoms” (14%). The survey also showed that patients generally felt comfortable communicating openly with their healthcare professionals about remission. However, exposure to the improved educational materials did not significantly enhance their sense of preparedness for these discussions.
In conclusion, the study highlights that patients primarily define remission based on the alleviation of symptoms. There appears to be minimal evidence of barriers preventing patients from discussing remission with their healthcare providers. This suggests that refining educational materials could help bridge the gap in understanding between patients and healthcare professionals regarding the concept of remission in IBD.
Introduction
Inflammatory bowel disease (IBD) affects approximately 2.4 million Americans and encompasses conditions that cause chronic inflammation in the gastrointestinal tract. This inflammation can manifest through symptoms such as abdominal pain, frequent bowel movements, and diarrhea, though it can also be present without visible symptoms. While IBD currently has no cure, patients may experience periods of remission. Remission is typically categorized in three ways: clinical remission (no active symptoms), endoscopic remission (no visible disease activity during a colonoscopy), and histologic remission (no inflammation at the tissue level).
Research indicates a disparity between how patients and healthcare professionals define remission. Patients often focus on the absence of symptoms as a marker of remission, whereas healthcare professionals rely on objective measures like endoscopic or histologic remission. This difference in perspective may stem from varying priorities, a lack of understanding about the disease, or challenges patients face in detecting disease activity without symptoms.
To address this, healthcare professionals have increasingly adopted a “treat-to-target” (T2T) approach, which emphasizes early intervention to minimize disease activity. This strategy involves setting clear treatment goals in collaboration with the patient, selecting therapies based on the risk of disease progression, and regularly monitoring and adjusting treatment to achieve these goals. Effective communication and a shared understanding of remission between patients and healthcare professionals are crucial for the success of this approach, highlighting the importance of patient education.
The study aimed to gather insights from IBD patients through a web-based survey, focusing on three key research questions: (1) How do patients currently perceive remission, do they believe it is achievable, and have they discussed it with their healthcare providers? (2) What barriers exist in patient-provider communication, and how do patients prefer to receive information? (3) How can existing educational materials be improved to enhance patients’ understanding of remission and better prepare them for discussions about treatment goals with their healthcare professionals?
Method
This study gathered data using an online survey hosted by SurveyHealthcare Global (SHG), a firm specializing in healthcare market research. SHG recruited U.S. adults via email invitations to their opt-in panel members, who were then directed to a screening questionnaire. This initial screening identified respondents’ age, diagnosis of Inflammatory Bowel Disease (IBD), and specific types such as Crohn’s Disease (CD), Ulcerative Colitis (UC), or Indeterminate Colitis (IBD-U). Eligible participants—adults aged 18 or older, residing in the U.S., and diagnosed with one of these conditions—were compensated with reward points after completing the survey.
The survey itself was informed by insights from nine online focus groups conducted in 2021 with 43 adult IBD patients. These focus groups, segmented by disease type and severity, aimed to explore patients’ perceptions of remission in IBD. Patients’ responses from these discussions helped shape the definitions of IBD remission that were later incorporated into two specific survey questions.
Before the full survey was launched, it was pretested with six adult IBD patients to assess its length and clarity. This pretest involved timed survey completion followed by a cognitive interview, where patients reviewed their answers and provided feedback on their thought processes. Based on these interviews, minor revisions were made to the survey to improve question clarity.
The survey was structured into several sections:
1. Patient Characteristics: This section collected demographic data, including age, gender, ethnicity, race, education, and health literacy.
2. Patient Experience with IBD: This part covered the patients’ medical history, including diagnosis date, recent symptoms, surgeries, medication use, and hospital visits.
3. Understanding of IBD Remission: Here, patients reflected on their personal understanding of remission in IBD. They were presented with a series of statements about remission, selected from the focus groups, and asked to choose those that resonated with them. They also answered questions about whether they believed remission could be achieved, whether medication use affected remission status, and how often they discussed remission with their healthcare providers.
4. Patient Communication Preferences and Experiences: This section explored how patients preferred to receive information about remission and assessed their experiences communicating with healthcare professionals. Patients rated the importance of discussing remission at different stages of treatment and indicated their preferred communication methods.
5. Educational Experiment: Participants were randomly assigned to read one of three versions of educational material about IBD remission and then answered related questions. The first version was the current description from the Crohn’s & Colitis Foundation, while the other two were updated versions. Participants rated the readability of the material, their preparedness to discuss or make medical decisions, and their willingness to pursue treatments based on the information provided.
Throughout the data collection process, several quality control measures were implemented to ensure the validity of the responses. These included excluding respondents who completed the survey too quickly, those who gave inconsistent answers, and responses that seemed unlikely or infeasible. Additionally, SHG employed checks to prevent duplicate responses and ensure that only genuine patients participated.
The study’s results were primarily summarized using descriptive statistics, with differences between groups assessed using Chi-square tests and t-tests. A Wilcoxon rank-sum test was also employed as a robustness check due to the nature of the Likert scale items. The study was reviewed and approved by RTI International’s Institutional Review Board, and all participants provided informed consent.
The study conducted over a nine-week period from October to December 2023 involved 1,495 patients, with data collected and analyzed after thorough quality checks. The median survey response time was 10.1 minutes. Most participants were under 45 years old (57.5%), female (63.0%), White (75.2%), and college educated (82.1%).
Patient Experience with IBD
Half of the participants reported their inflammatory bowel disease (IBD) as constantly or often active over the previous six months, with abdominal pain or cramps being the most prevalent symptom. About 22% had undergone surgery for IBD, with 3% having had a colectomy and 4% an ostomy. Additionally, 30% visited an emergency room, and 25% had an overnight hospital stay in the six months preceding the survey. Common medications included biologics (29%), corticosteroids (28%), 5-aminosalicylic acids (23%), immunomodulators (15%), and targeted synthetic small molecules (7%).
Understanding and Experience with IBD Remission
The study found that patients often defined remission based on symptom control and quality of life, with 22% saying remission meant reduced symptoms. The definition varied across subgroups, with Crohn’s patients more likely to associate remission with disease non-progression, and indeterminate colitis patients tying it to clear medical test results. Around 67% of patients believed remission was possible, 62% had discussed it with their healthcare professional, and 38% had been told they were in remission. Differences were noted based on IBD severity, duration, and patient age, with those having severe IBD or longer disease duration being less optimistic about remission.
Patient Communication Preferences and Experiences
Patients preferred receiving information on IBD remission through written materials from healthcare professionals (78%) or trustworthy websites (74%). A significant majority (over 60%) emphasized the importance of discussing remission consistently, regardless of disease type or severity. Patients generally rated their communication with healthcare professionals positively, with 79% reporting honest communication and 73% feeling comfortable asking questions.
Education Experiment
The study also included an educational experiment, comparing different versions of educational materials. Patients exposed to the T2T (Treat-to-Target) version were better at identifying the benefits of remission and rated the readability higher compared to those who received the Control or Updated Control versions. However, these variations did not significantly impact patients’ preparedness for discussing care or their willingness to pursue treatments to achieve remission.
In summary, the study highlights the diverse experiences and understanding of remission among IBD patients, emphasizing the need for tailored communication and education strategies to support patient care.
Conclusion
Previous studies have highlighted a disparity between patients’ and healthcare professionals’ understanding of remission, with patients typically associating remission with the absence of symptoms, while healthcare professionals define it based on objective test results. This discrepancy could pose challenges for collaborative treatment approaches like Treat-to-Target (T2T), which require alignment between patients and their healthcare providers. This study contributes to existing research by conducting one of the first large-scale surveys to explore how patients currently define remission and their preferences for communicating with healthcare professionals. Additionally, it is the first to evaluate whether educational materials can enhance patients’ understanding of Inflammatory Bowel Disease (IBD) remission, thereby improving their preparedness to discuss treatment options and their willingness to undergo treatments and tests aimed at achieving remission.
The study revealed that nearly two-thirds of patients believe remission in IBD is attainable and have discussed it with their healthcare professional, though about half of the patients mistakenly believe that achieving remission would not require ongoing medication. Definitions of remission among patients varied, with the most common being the absence or reduction of symptoms. These findings align with previous research but also introduce new insights, such as a lower proportion of patients having discussed remission with their healthcare professional compared to prior studies.
Communication between patients and healthcare professionals was generally positive, with the majority of patients feeling comfortable discussing their treatment and believing that their healthcare providers communicated openly and provided adequate information. The study also found that most patients preferred receiving written information from their healthcare professional or a trusted website.
A key aspect of this research was evaluating the effectiveness of educational materials designed to improve patient understanding of remission. The study found that materials focusing on short- and long-term treatment goals and a single, clear definition of remission were most effective in enhancing patient comprehension. However, these materials did not significantly impact patients’ preparedness to discuss remission or their willingness to undergo treatments.
The study acknowledges several limitations, including the use of a convenience sample from an opt-in online panel, which may not be representative of the broader IBD population. Additionally, the reliance on hypothetical questions to assess the effectiveness of educational materials may not accurately reflect real-world patient behavior.
In conclusion, the study underscores a significant gap in the understanding of remission between patients and healthcare professionals, which could influence patient expectations and clinical outcomes. Educational materials tailored to address this gap could be effective, particularly when provided by healthcare professionals or through trusted online resources. The findings highlight the importance of clear communication and education in managing IBD and suggest that focusing on a unified definition of remission could enhance patient understanding and engagement in their care.
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