Patients’ and gastroenterologists’ preferences regarding outcomes and medication attributes in ulcerative colitis

Anastasia Katsoulaa,b, Olga Gioulemea, Paschalis Paschosb,c, Maria Toumpalidoub, Maria Mainoub,d, Konstantinos Malandrisb, Anna-Bettina Haidiche, Apostolos Tsapasb,d,f

Hippokration Hospital, Aristotle University of Thessaloniki, Greece; Papageorgiou Hospital, Thessaloniki, Greece; University of Oxford, UK

aGastroenterology Division-Second Propedeutic Department of Internal Medicine, Hippokration Hospital, Medical School, Aristotle University of Thessaloniki, Greece (Anastasia Katsoula, Olga Giouleme); bClinical Research and Evidence-Based Medicine Unit, Second Medical Department, Aristotle University of Thessaloniki, Greece (Anastasia Katsoula, Paschalis Paschos, Maria Toumpalidou, Maria Mainou, Konstantinos Malandris, Apostolos Tsapas); cFirst Department of Internal Medicine, “Papageorgiou” Hospital, Thessaloniki, Greece (Paschalis Paschos); dSecond Medical Department, Aristotle University of Thessaloniki, Greece (Maria Mainou, Apostolos Tsapas); eLaboratory of Hygiene, Social-Preventive Medicine and Medical Statistics, School of Medicine, Faculty of Health Sciences, Aristotle University of Thessaloniki, Greece (Anna-Bettina Haidich); fHarris Manchester College, University of Oxford, UK (Apostolos Tsapas)

Correspondence to: Anastasia Katsoula, Hippokration General Hospital, 49 Konstantinoupoleos St, 546 42, Thessaloniki, Greece, e-mail: anastkatsoula@gmail.com
Received 18 September 2024; accepted 21 January 2025; published online 25 February 2025
DOI: https://doi.org/10.20524/aog.2025.0944
© 2025 Hellenic Society of Gastroenterology

Abstract

Background Patients’ and gastroenterologists’ views on the relative importance of treatment outcomes and medication attributes for ulcerative colitis (UC) may differ. We aimed to explore which treatment outcomes and medication attributes are considered important by both for therapeutic decisions.

Methods Eight gastroenterologists and 23 patients with UC in Greece participated in semi-structured interviews and focus groups, respectively. The focus groups and interviews were audio-recorded, transcribed and coded, utilizing thematic analysis until data saturation was achieved.

Results Themes that were discussed included the impact of UC on daily life, UC-related outcomes, drug-related attributes and the patient–doctor relationship. Within these themes, disparities between the perspectives of gastroenterologists and patients were evident on 2 main issues. Gastroenterologists prioritized clinical remission and emphasized long-term objectives, such as mucosal healing, while patients focused on shorter-term outcomes, such as the early and sustained relief of symptoms. Regarding medication attributes, important factors for patients were primarily those that impacted their daily life, such as route of administration, dosage and the need for hospital visits. In contrast, gastroenterologists were more concerned about potential adverse events and non-responsiveness to treatment. There was a consensus regarding the importance of shared decision-making for UC management, emphasized by both patients and clinicians.

Conclusions Gastroenterologists mostly prioritize objective measures of remission, while patients mainly focus on factors related to their quality of life and overall well-being. Enhancing communication regarding different goals and expectations may strengthen the physician–patient relationship, ultimately resulting in better shared therapeutic decision-making.

Keywords Keywords Ulcerative colitis, qualitative research, patient-centered approach

Ann Gastroenterol 2025; 38 (2): 174-181

Introduction

Ulcerative colitis (UC) is a relapsing–remitting, chronic, idiopathic inflammatory disease that leads to progressive bowel damage and requires lifelong management [1-3]. The management of moderate-to-severe UC has become increasingly complex, given the growing number of available biologics and small molecules with various efficacy, safety, and administration characteristics such as dose and frequency [4-6]. As the therapeutic options with unique features expand, there is a growing acknowledgment that therapy selection should be adapted to suit the preferences and requirements of patients [7].

Patient-centered care has gained significant interest, especially for chronic conditions like UC, where patients manage long-term disease burdens. Understanding patients’ perspectives on medical options is crucial for recognizing their daily challenges. Integrating their preferences, needs, values and considerations into clinical practice encourages active participation in therapeutic decision-making [8,9]. A patient-centered approach can enhance compliance and satisfaction, leading to better therapeutic outcomes and stronger relationships between patients and healthcare providers [10]. Therefore, understanding the factors important to UC patients is essential [11]. Multiple studies have highlighted gaps in perceptions between healthcare providers and UC patients regarding optimal disease management and the disease’s impact on health-related quality of life [12,13]. However, there is also a need to understand healthcare providers’ perspectives on treatments in order to fully grasp the patient–provider relationship in long-term follow-ups. Limited research has explored patients’ perspectives on UC treatment priorities [14-16], and a few studies have compared clinicians’ preferences to those of patients, despite potential differences in views on treatment outcomes and medication characteristics [17,18]. Using a qualitative approach, this study aimed to explore both Greek gastroenterologists’ and patients’ preferences in the decision-making process regarding UC treatments.

Materials and methods

Study overview

We used a qualitative descriptive design, incorporating focus groups with patients and interviews with gastroenterologists. This approach allows for an in-depth examination and systematic analysis of semi-structured data to provide valid insights into subjective experiences [19,20]. The design was deemed most appropriate for gathering comprehensive insights from participants. The study protocol was reviewed and approved by the Local Ethics Research Committee, Aristotle University of Thessaloniki. Our study is reported according to the consolidated criteria for reporting qualitative research (COREQ), a checklist of 32 items specifically designed for reporting interviews and focus groups [21].

Focus Groups

We conducted focus groups to gain insight into patients’ care experiences and explore the impact of their illness on their lives [22,23]. Focus groups were preferred over individual interviews to capture the dynamic exchange of viewpoints and concepts in a group environment, generating insights through interaction. Engaging participants in collective dialogue allowed us to capture how individual opinions were influenced by group dynamics, providing valuable context to the data collected. Potential participants were identified through 2 tertiary clinical sites specializing in the treatment of inflammatory bowel disease (IBD) and the online community of the Hellenic Society of Crohn’s Disease and Ulcerative Colitis Patients. To be included in the study, patients had to be older than 18 years, have a confirmed diagnosis of UC, be able to give informed consent, and understand and speak Greek fluently. We aimed to recruit both biologic-experienced patients and biologic-naïve patients to capture a diverse range of viewpoints. Each focus group was planned to include 6-10 participants. Upon contacting potential participants, a researcher (AK) provided a detailed explanation of the group’s objectives, emphasized the voluntary nature of participation and assured confidentiality. Informed consent was obtained from all participants before the focus group sessions.

The focus groups were conducted in a semi-structured format led by an experienced psychologist (MT), who introduced topics, posed questions, moderated the discussion and ensured all participants had the opportunity to contribute. A second researcher (AK) observed the sessions, recorded audio, assisted the facilitator with time management and took field notes to aid transcription. Discussions followed a semi-structured topic guide (Appendix 1) developed by consensus among 4 researchers (AK, MT, PP and AT). The guide included open-ended questions exploring patients’ experiences and perspectives on living with UC, its management, and available treatments. Each session began with an introduction by the moderator, explaining the rules to encourage active involvement. Participants were encouraged to speak freely, interact and discuss their experiences, with confidentiality emphasized. Audio data were transcribed verbatim before the main analysis, and a preliminary qualitative data analysis occurred simultaneously to achieve data saturation [24].

Interviews

Semi-structured interviews with gastroenterologists were conducted to explore each physician’s unique perspectives through 1-on-1 interactions. Individual interviews allowed for a flexible and personalized approach, enabling physicians to express their thoughts openly without group influence. Eligible participants were gastroenterologists specializing in IBD, identified from the Hellenic Group for the Study of IBD, and selected based on their experience and patient volume. Written informed consent was obtained from participants before the interviews.

All interviews took place in quiet, private settings. A single researcher (AK) conducted face-to-face interviews, prompting participants to discuss topics related to the research question using open-ended questions. Interviews followed a semi-structured topic guide (Appendix 2) developed by consensus among 4 researchers (AK, MT, PP and AT). The guide included questions aimed at exploring the general approach and experiences of gastroenterologists in treating UC patients. Interviews lasted 15-30 min, were audio-recorded, securely stored, and transcribed verbatim.

Data analysis

We conducted a thematic analysis [25-27] using the general principles of grounded theory [28] to analyze the transcriptions of focus group sessions and interviews. The analysis followed these steps:

  • (1) Familiarization with the data: Researchers carefully read and re-read the data to gain a deep understanding of the content. This step involved actively engaging with the data to become familiar with the depth and breadth of the material, including noting initial ideas and observations.

  • (2) Generating initial codes: After multiple readings of the transcripts, significant words or phrases were identified and highlighted. Marginal notes were taken, and an initial set of codes was created to categorize various data segments.

  • (3) Searching for themes: Researchers identified relationships among different codes, grouping similar concepts together to form themes and subthemes.

  • (4) Reviewing themes: Themes were reviewed in 2 stages. First, the researchers examined each theme within the coded data to ensure its relevance. Next, they reviewed the themes across the entire data set. This process involved comparing the themes with the original data to confirm their accuracy and refining the thematic structure to better align with the research objectives.

  • (5) Defining and naming themes: In this step, the researchers defined each theme clearly, ensuring they reflected the core idea or concept within the data. Each theme was given a concise and meaningful name that captured its essence, allowing for a clearer interpretation of the themes.

  • (6) Writing the report: Finally, the researchers produced a detailed report, weaving together the themes with supporting data excerpts. This step involved writing a comprehensive narrative that linked the themes to the research questions and provided a clear interpretation of the findings.

To enhance credibility, these steps were independently carried out by 2 researchers (AK and PP). Through regular meetings, codes and recognized themes underwent review and discussion until consensus was reached, with feedback from the entire research team. A complete list of themes, reflecting the experiences of focus group participants and the perspectives of gastroenterologists, was developed. Transcripts were initially coded in the original language, with Greek quotations translated into English for presentation. After completing the inductive analysis, we identified codes more representative of patients and gastroenterologists, allowing us to discern similarities and differences between the 2 groups. Data collection continued until theoretical saturation was reached, defined as the point when no new themes or concepts were identified.

Results

Study participants

Initially, 26 patients were identified from 2 IBD clinics and volunteered for the focus group study. Three patients could not be reached or did not attend their scheduled sessions. The remaining 23 patients participated in 3 focus groups, each lasting 60-90 min. One group included 7 patients treated with biologic therapy, another had 10 patients not treated with biologic therapy, and the third group was mixed, with 6 patients. The first 2 sessions were face-to-face, while the third was conducted online via laptop, mobile or tablet. Participants included 12 females, and their ages ranged from 22-54 years (median 35.5 years). Thirteen patients had lived with the disease for more than 10 years, 7 for 5-9 years, and 3 for less than 5 years. Positive group dynamics were noted, with all participants contributing equally to the conversations.

For the interview study, 8 gastroenterologists were recruited. Of these, 8 worked in public hospitals, 5 of which were also university hospitals. Additionally, 5 gastroenterologists also had a private practice. Most participants were male (n=6), with ages ranging from 45-62 years (median 56 years). Seven had been practicing gastroenterology for over 20 years, and 1 for 15-20 years. All reported treating more than 70 UC patients per month. All participants were members of the European Crohn’s and Colitis Organisation (ECCO). The interview sessions lasted between 20 and 30 min. The characteristics of the participants, including both patients and physicians, are presented in Table 1.

Table 1 Participants’ characteristics

thumblarge

Patients’ perspectives

In focus groups, 5 main themes were discussed: the impact of UC on daily life, UC-related outcomes, drug-related attributes, dealing with UC, and the patient–doctor relationship. We identified a total of 15 subthemes derived from these main themes. Indicative quotes supporting these themes and subthemes from patients are presented in Appendix 3. The themes discussed in the focus groups are summarized as follows:

Impact of UC on daily life

UC patients shared their experiences with the condition, highlighting its profound psychological impact. Many described the diagnosis as a shock, leading to denial and significant emotional strain. Phrases like “shock” and “denial” underscored the psychological toll. Participants vividly described how UC imposes constraints on various aspects of their lives, including professional, social, and personal domains, leading to a challenging and restricted lifestyle. Participants recounted periods of withdrawal and isolation, feeling they had made sacrifices without receiving expected benefits. Emotional and psychological burdens were recognized as prominent subthemes. A primary concern was the unpredictability of symptoms and the necessity of always being aware of restroom locations.

Fear of future complications, such as cancer, and managing flare-ups during crucial life moments contributed to insecurity and disrupted normalcy. Additionally, some participants experienced anxiety or guilt regarding the hereditary nature of UC, fearing the possibility of passing the illness to their offspring. Women of reproductive age expressed concerns about family planning, including fertility, pregnancy, and the risks of flare-ups associated with it.

Outcomes related to UC

Regarding UC-related outcomes, almost all participants prioritized their symptomatic response. They strongly desired the disappearance of symptoms, highlighting the significance of being free from bleeding, pain and urgency, to regain a sense of normalcy. The ability to function without worrying about restroom locations and living a symptom-free life was strongly emphasized.

Secondary priorities included achieving a broader sense of normalcy in daily life and an improved quality of life, encompassing emotional well-being, social interactions, and the ability to pursue professional and personal goals.

Drug-related attributes

Patients focused primarily on the impact of medications on daily life, considering factors like the route of administration, dosage requirements and the necessity of frequent hospital visits. There was a shared preference for medication with fewer doses, long intervals between administrations, and minimal invasiveness. Less frequent hospital visits and treatments contributed to a feeling of normalcy and momentarily forgetting about the illness.

Some patients envisioned an “ideal” medication: a single dose or 1-time treatment offering a lasting solution. A minority reported that drug characteristics were less concerning as long as the medication was effective. Various modes of treatment administration, such as injections and pills, were discussed, with participants expressing willingness to use any form that would lead to symptomatic relief. Concerns about the long-term use of certain medications, particularly those with potential side effects, were also expressed.

Dealing with UC

Participants acknowledged the crucial role of medications in controlling UC, emphasizing the importance of adhering to prescribed treatment regimens for successful management. Coping strategies included seeking psychological support, actively managing stress, and making lifestyle changes. Avoiding stressful activities and relying on supportive individuals were essential. Understanding and accepting the condition were crucial for achieving a balanced and fulfilling life.

Patient–doctor relationship and shared decision-making

Trust in healthcare professionals was identified as a crucial theme. Participants emphasized the importance of relying on their doctors for accurate information and personalized treatment plans. They shared experiences of changing doctors until finding one who matched their psychological needs. A positive change was noted when transitioning to a supportive doctor who offered reassurance and clear explanations. Establishing a strong relationship with the physician during the early stages after diagnosis was crucial for long-term condition management. The significance of having a doctor who addresses not only physical symptoms but also provides emotional support was highlighted.

Information and communication with healthcare providers were considered essential for shared decision-making regarding treatment. Participants advocated for active involvement in treatment decisions, including choosing medication and its method of administration. They expressed a preference for having more control over their healthcare and the ability to tailor treatments to their preferences.

Gastroenterologists’ perspectives

The interviews with gastroenterologists touched upon 4 main themes: shared decision-making in treatment, UC-related outcomes, drug-related attributes, and patient support. Fourteen subthemes were identified from these main themes. Indicative quotes supporting these themes and subthemes are detailed in Appendix 4. The themes discussed in the gastroenterologists’ interviews are summarized as follows:

Views on shared decision-making

Shared decision-making was identified as a key theme, with physicians emphasizing the importance of personalizing treatment based on the patient’s desires and requirements. However, time constraints and the lack of decision aids were identified as barriers to achieving a truly collaborative approach. Clinical practice often relies on informational materials like brochures and presentations to inform patients about their condition and treatment alternatives.

Physicians noted that patients’ preferences for involvement in decision-making vary widely. Some desire an active role, forming opinions about their treatment, while others prefer to delegate decision-making to avoid the stress associated with making choices. Generational differences also impact the extent to which patients want to be involved, with younger patients tending to be more assertive, while older patients may be more receptive to the doctor’s recommendations.

Outcomes related to the UC

Clinical remission was identified as the primary focus and goal of treatment. This refers to the absence or significant reduction of disease activity and inflammation in the colon. Achieving and maintaining clinical remission was seen as crucial for the patient’s overall well-being and health. Physicians emphasized the importance of long-term outcomes, particularly over a 5-year period, when considering treatment goals. Mucosal healing, defined by endoscopic improvement and histologic remission, was emphasized as a secondary outcome essential for long-term disease management and prevention of disease progression.

Drug-related attributes

The absence of significant side effects and serious toxicity was identified as the most important factor for treatment selection. Physicians emphasized the significance of minimizing risks associated with treatment to ensure patient safety and avoid undesirable consequences. The most worrisome adverse reactions mentioned included malignancies, severe infections, and alterations to immune pathways.

Effectiveness was also considered vital, with a focus on bringing about rapid and sustained improvement. Physicians stressed the importance of selecting medications that remain effective over a long period. Confidence in the medication’s ability to manage the condition for many years was deemed crucial. They also highlighted the importance of treatment methods that fit each patient’s daily routines and their capacity to adhere to prescribed regimens.

Patient support

Dedicating sufficient time for discussions with patients was emphasized by the participants. Adequate time was considered essential for ensuring patients fully comprehend and perceive the information provided. Recognizing the importance of understanding patients’ perspectives, including their fears, concerns, and life circumstances, was seen as facilitating agreement on treatment strategies. Moreover, the necessity for psychological support was acknowledged. Physicians suggested incorporating a psychologist into the healthcare team to address the unique challenges and mental health aspects of UC patients.

Discussion

This study explored the concordance between patients’ and gastroenterologists’ preferences regarding therapeutic decision-making for UC using qualitative methods. Focus groups and interviews provided insights into the challenges, priorities, and preferences related to managing UC.

Patients highlighted the profound impact of UC on their physical, emotional, and social well-being, expressing a strong desire for symptomatic relief and improved quality of life as their primary treatment goals. In line with our findings, a 2020 systematic review of 11 qualitative studies highlighted physical symptoms as the greatest challenge for patients [29]. Similarly, findings from a recent Greek study [30] revealed that 78% of UC patients reported their condition to be mentally exhausting, underscoring the substantial emotional toll UC takes on patients. This emphasizes the importance of addressing not only physical symptoms, but also the psychological and emotional aspects of the disease. Such an approach is consistent with the principles of patient-centered care, where managing the emotional and psychological impact of UC is crucial, as confirmed by various studies on health-related quality of life in UC patients [31].

Regarding specific drug attributes, patients preferred medications with minimal invasiveness and fewer doses to maintain normalcy and minimize disruptions. These priorities are consistent with findings from the discrete choice experiment (DCE) study where patients with UC ranked oral administration and minimizing risks of adverse events as highly important [32]. Moreover, a qualitative study found that patients prioritize pill-based dosing schedules over injections or infusions, which aligns with the findings of our study [15].

Additionally, patients expressed a strong desire for shared decision-making, emphasizing the importance of trust, effective communication and active participation in treatment planning. They valued transparent discussions about treatment options, outcomes and potential risks. Similar to our results, previous research has also shown that patients with UC express a growing preference for active involvement in the decision-making process regarding their treatment options [33-35]. Moreover, this aligns with findings from the CARES study [36], which also identified significant gaps in understanding between patients and physicians, and from the DCE study [32], which emphasized that patients valued personalized care and preferred active involvement in treatment decisions. Similarly, the study by Viazis et al [30] emphasized that patient satisfaction during interactions with healthcare providers is significantly influenced by effective communication and trust.

Conversely, gastroenterologists prioritized objective and scientific metrics of remission, focusing on long-term outcomes such as mucosal healing, defined by endoscopic improvement and histologic remission. This perspective aligns with previous research, which showed that physicians value long-term remission and endoscopic outcomes as key treatment goals [15,32]. For drug attributes, gastroenterologists emphasized patient safety and the long-term efficacy of medications, focusing on minimizing side effects and optimizing treatment outcomes. Gastroenterologists expressed agreement on the importance of shared decision-making, recognizing its potential to enhance patient satisfaction and adherence. However, they identified significant barriers to its implementation, such as time constraints and the lack of decision aids, which hinder truly collaborative care.

This discrepancy in perspectives highlights the differing priorities between patients, who seek immediate relief and improved quality of life, and physicians, who focus on sustained clinical outcomes. While both groups agree on the importance of long-term symptom control, patients place greater emphasis on addressing the immediate physical and emotional toll of UC. Addressing these obstacles is essential for fostering a patient-centered approach and aligning treatment decisions with patients’ values and priorities.

Our results highlight the importance of enhancing provider–patient relationships to promote shared decision-making in UC management. As therapeutic options for UC continue to expand with varying efficacy, safety, and administration profiles, understanding both patients’ and clinicians’ preferences becomes even more essential. Bridging the gap between patients’ immediate goals—such as symptom relief and quality of life—and clinicians’ focus on long-term clinical outcomes is key to developing a truly patient-centered approach to treatment.

One of the novel contributions of our study is the emphasis on the integration of patients’ values and preferences into the decision-making process, recognizing the significant emotional burdens that often accompany chronic conditions like UC. This approach to decision-making is consistent with the growing body of literature advocating for patient-centered care in chronic disease management [37-39]. By facilitating better alignment of treatment options with the individual needs of patients, we can enhance satisfaction and improve therapeutic outcomes. Our findings underscore the critical role of shared decision-making in aligning these perspectives and suggest that decision aids can play a pivotal role in this process. These tools, which provide evidence-based information in an easily understandable format, can support active patient participation, reduce uncertainty and promote informed decision-making. The recent Cochrane review supports the utility of decision aids in enhancing patient understanding and decision-making in chronic conditions, highlighting their potential application in UC management [40].

From a research perspective, our study opens new avenues for exploring which treatment outcomes and medication attributes are most important to both clinicians and patients with UC. Through rigorous examination in a larger sample, we can ascertain which factors hold the utmost importance to patients, thereby refining our understanding of patient-centered care in UC management. Of particular importance is the potential utility of these patient-important outcomes as endpoints in future clinical trials. By aligning trial endpoints with the outcomes that matter most to patients, we can enhance the applicability of research findings, ultimately aiming for more efficient and personalized treatment strategies in UC management.

The main strength of this study is the significant interaction observed among focus group participants, enriching the data collected and enhancing understanding. This interaction not only enriched the breadth of data collected but also enhanced the depth of understanding as participants challenged, corroborated and expanded upon one another’s viewpoints. Including patients with different treatment experiences and disease durations provided a comprehensive insight into their experiences [23]. The use of a qualitative exploratory design allowed the acquisition of non-formalized responses, and hence an in-depth understanding of their preferences and concerns. To ensure the internal validity of our conclusions we adhered to relevant guidelines for the conduct and reporting of qualitative studies [20,21].

Despite its strengths, the study has several limitations that need to be addressed. The small sample size could be considered a limitation; nevertheless, discussions recorded both during focus groups and during interviews allowed us to claim we met theoretical saturation. Furthermore, the inclusion of solely Greek participants with UC could limit the generalizability of our findings. The economic crisis and the COVID-19 pandemic have significantly impacted the Greek healthcare system, potentially influencing the experiences of UC patients in ways that may not be representative of other contexts. Therefore, while our study provides valuable insights, the unique circumstances in Greece may limit the extrapolation of findings to other regions.

In conclusion, while patients and gastroenterologists share common goals of improving treatment outcomes and enhancing quality of life for individuals with UC, there are differences in their perspectives and priorities. This study underscores the need for shared decision-making between them to improve clinical practice. Incorporating patients’ preferences into decision-making at every stage of care is crucial for healthcare providers to offer personalized care and decide on optimal therapeutic plans for UC patients.

Summary Box

What is already known:

  • Ulcerative colitis (UC) significantly impacts patients’ physical, emotional, and social well-being, influencing their quality of life

  • Patient-centered care is crucial in UC management, encouraging active patient participation in treatment decision-making to improve outcomes

  • Limited research has explored and compared both patients’ and clinicians’ treatment priorities in UC, especially in specific populations such as Greek patients and gastroenterologists

What the new findings are:

  • UC patients prioritize immediate symptomatic relief and improving daily life, emphasizing the importance of minimal treatment invasiveness and fewer medication doses

  • Gastroenterologists focus on long-term outcomes, emphasizing clinical remission, mucosal healing and minimizing side effects, reflecting a safety-driven approach to therapy

  • Patients value shared decision-making, advocating for more involvement in their treatment decisions and highlighting the importance of trust and communication with healthcare providers

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Notes

Conflict of Interest: None

Funding Source: This work was supported by research grant 2020EOMIFNEp5 from the Hellenic Group for the Study of IBD (EOMIFNE)

Previous Presentation: This study was presented as an abstract at the 19th Congress of the European Crohn’s and Colitis organization in Stockholm, February 21-24, 2024