Discordance between observer and patient-reported shared decision-making in inflammatory bowel disease: A multicenter cross-sectional study

Abstract

Background:

Inflammatory bowel disease (IBD) is a chronic inflammatory disorder affecting the gastrointestinal tract. Optimal management of this condition requires collaboration between patients and physicians, a process known as shared decision-making (SDM). In this study, we aim to evaluate the quality of SDM in gastroenterology clinics in the Eastern Province of Saudi Arabia.

Methods:

This multicenter, cross-sectional study was conducted between September 2024 and December 2025. Audio recordings of gastroenterology visits were independently assessed by two reviewers using the validated Observing Patient Involvement in Decision-Making (OPTION-5) scale. Moreover, patients evaluated their encounters using the 9-item SDM Questionnaire (SDM-Q-9). A multivariable regression analysis was performed to determine independent predictors of SDM from both the patient and physician perspectives.

Results:

A total of 105 encounters from three hospitals were analyzed with a median OPTION-5 score of 5 out of 100 (IQR 0–10). A multivariate linear regression analysis showed that longer consultation duration in minutes (β = 1.88, 95% Confidence Interval (CI): 0.21–3.56, P = 0.028) and the decision to start a new medication (β = 24.86, 95% CI: 17.24–32.48, P < 0.001) were independently associated with higher total OPTION-5 scores. There was no significant correlation between observer-rated OPTION-5 scores and patient-reported SDM-Q-9 scores (Spearman’s ρ = –0.044, P = 0.687), indicating discordance between externally assessed and patient-perceived shared decision-making.

Conclusion:

In this cohort of patients with IBD from three centers in the Eastern Province of Saudi Arabia, observer-rated SDM was low. Multiple factors were significantly associated with the level of SDM, including longer consultation duration and decision to start new medication. Further studies to determine interventions that can enhance SDM are warranted.

INTRODUCTION

Inflammatory bowel disease (IBD) is a chronic inflammatory disorder affecting the bowels. Patients are usually classified as Crohn’s disease (CD), ulcerative colitis (UC), or indeterminate colitis.[1,2] Optimal management of such chronic disorders requires collaboration between patients and physicians.[3]

In the management of IBD, decision-making is a constant, whether it is choosing an advanced therapy, switching therapies, determining the need for invasive investigations or performing surgery. This variability of options makes shared decision-making (SDM) instrumental in the clinical care of IBD patients. Multiple therapeutic options are now available for IBD, causing a shift in treatment paradigms.[4] UC and CD pathways endorse several first-line therapies since available advanced therapies are all effective when compared to placebo, but comparative effectiveness data are still lacking. This further complicates the process of choosing the best therapy for each patient.[5]

Although novel strategies have been emerging in the management of IBD, surgical resection is still often needed. Among patients with CD, the cumulative risk of surgery at 1 year, 5 years, and 10-years after diagnosis was 18.7%, 28.0%, and 39.5%, respectively.[6] The decision is usually tailored based on many variables, the most important of which is the patients’ values. Thus, when choosing a therapy, patients should be encouraged to share their values to reach a therapeutic plan that matches their personal preferences.[7] Several recent studies indicate that patients prefer to be involved in decisions concerning their treatment.[3]

SDM is a pillar of evidence-based medicine (EBM). It is defined as the process in which healthcare providers and patients come together to explore available treatment options and come to a mutual decision guided by the best available evidence.[8] It is believed that tailoring management to a patient’s preference may improve compliance, enhance quality of life and better clinical outcomes. Moreover, SDM possibly reduces healthcare costs.[5]

In this study, we aim to evaluate the quality of SDM for IBD patients from an observer perspective, in addition to the patients’. Defining possible associations between the level of SDM and characteristics of the clinician, patient, and consultation was another target. Collectively, this knowledge would help guide higher implementation of SDM in current practice.

PATIENTS AND METHODS

Study design and participants

This is a cross-sectional, multicenter study conducted to assess the quality of SDM in IBD clinics in the Eastern region, of Saudi Arabia. The study was carried out between September 2024 and December 2025.

The target population were adult patients (age >18 years) diagnosed with IBD. Diagnosis was confirmed by endoscopic, radiological, and histological findings. Eligible participants were those attending gastroenterology clinics with an encounter involving decision-making (e.g., initiation of new therapy, surgical referral, etc.). The study was conducted across three public hospitals in the Eastern Province, two secondary hospitals and one tertiary care center.

Informed consent was obtained from patients by a member of the research team during clinic visits. Patients who agreed to participate consented for audio-recording of the visit. The recording was made using a secure device during the clinical encounter.

After the clinical encounter, patients were asked to complete the 9-item shared decision-making questionnaire (SDM-Q-9), a validated patient-reported questionnaire designed to assess the extent of SDM during the consultation.[9] The questionnaire was administered immediately after the encounter and was available in both English and Arabic. The Arabic version of the SDM-Q-9 has been previously validated.[10] Patients completed the version that corresponded to their preferred language.

The SDM-Q-9 consists of nine items rated on a 6-point Likert scale ranging from completely disagree to completely agree.[9] The items assess key components of the SDM process, including recognition of the need for a decision, discussion of available treatment options, explanation of benefits and risks, elicitation of patient preferences, and joint agreement on management plan [Supplementary Table 1]. Higher total scores indicate greater involvement in SDM.

Supplementary Table 1.

SDM-Q-9 Questionnaire

Question	Completely Disagree	Strongly Disagree	Somewhat Disagree	Somewhat Agree	Strongly Agree	Completely Agree
Q1: My doctor made clear that a decision needs to be made
Q2: My doctor wanted to know exactly how I want to be involved in making the decision
Q3: My doctor told me that there are different options for treating my medical condition
Q4: My doctor precisely explained the advantages and disadvantages of the treatment options
Q5: My doctor helped me understand all the information
Q6: My doctor asked me which treatment option I prefer
Q7: My doctor and I thoroughly weighed the different treatment options
Q8: My doctor and I selected a treatment option together
Q9: My doctor and I reached an agreement on how to proceed

SDM-Q-9=Shared decision-making questionnaire

In addition, audio-recorded clinical encounters were independently assessed by two gastroenterologists from the research team, not involved in the recruitment process, using the validated OPTION-5 scale. This scale aims to evaluate the clinician’s involvement in patient decision-making. It is an observer-based measure that consists of five items that reflect key components of SDM, including the presentation of options, support for deliberation, provision of information, elicitation of patient preferences, and integration of those preferences into decision-making. Each item is scored on a 5-point ordinal scale, ranging from 0 (no effort) to 4 (exemplary effort), yielding a total score between 0 and 20. This total score is then rescaled to a 0–100 score for ease of interpretation, with higher scores indicating greater observed SDM.

Data collection

Clinician and patient characteristics

Following enrollment, clinicians completed a short questionnaire on their characteristics, including age, sex, health care setting (secondary, tertiary, university, or private care hospital), profession, and years of clinical experience.

The patients’ data were collected from medical records, including:

Sociodemographic characteristics

Age, sex, and educational level.

Clinical characteristics

IBD type (CD or UC), disease duration, and extent, C-reactive protein (CRP) level, Fecal calprotectin, number of corticosteroid courses in the past 6 months, and use of advanced therapies.

Visit details

Type of visit (new or follow-up), virtual or in-person, timing and presence of family member, or trainee during the encounter. Both patients and clinicians were aware that the encounter was recorded, but they were not made aware of the purpose of the recording.

Characteristics of decision-making

One audio-recording was obtained per patient for a single encounter. Each audio-recording was reviewed for audio sound quality and completeness. Recordings with poor sound quality or incomplete decision-making discussion were excluded. The duration of each visit and type of decision were documented.

Level of shared decision-making

Two independent gastroenterologists, who were members of the research team but not involved in patient recruitment, independently evaluated the quality of SDM using the 5-component Observing Patient Involvement in Decision-Making (OPTION-5) scale.[11] The Higher the OPTION-5 score, the higher the level of SDM.

Quality of SDM was evaluated from the patients’ perspective as well, using the SDM-Q-9 questionnaire. This validated score was given to patients to fill immediately after the clinic visit and was collected by the study team once completed.

Data analysis

Descriptive statistics were used to summarize clinician, patient, and consultation characteristics. Continuous variables are presented as medians with interquartile ranges (IQRs), while categorical variables are reported as frequencies and percentages. The primary outcome, total score of the OPTION-5 scale, was treated as a continuous variable. The median and IQR for the OPTION-5 scale and the SDM-Q-9 scores were calculated overall. In addition, median OPTION-5 and SDM-Q-9 scores were calculated per clinician and per patient, respectively. Univariable regression analyses were initially performed to identify factors associated with OPTION-5 scores. A two-sided P < 0.05 was considered statistically significant. Variables with clinical relevance or statistical significance were subsequently included in multivariable regression models to determine independent predictors of SDM from both the patient and physician perspectives. To minimize overfitting given the sample size, the number of predictors included in the multivariable model was restricted to a small set of clinically relevant variables selected a priori. These included consultation duration, decision type (new medication initiation), history of prior IBD-related surgery, CRP, and visit type (new vs follow-up). Regression coefficients (β) are presented with corresponding 95% confidence intervals (CI). The relationship between observer-rated and patient-reported SDM was assessed using Spearman’s rank correlation coefficient, given the non-normal distribution of the variables. A sensitivity analysis excluding virtual consultations was performed to assess the robustness of findings.

Ethical consideration

IRB approval was obtained from the ethics committee at King Fahad Specialist Hospital in Dammam. (MED0378). Consent was obtained from all patients before participation.

RESULTS

Characteristics of the clinician, patient, and consultation

One hundred and twelve consultations from three hospitals were aaudio-recorded, seven of which were excluded due to poor quality of recording. Three physicians were included in this study. These encounters took place in the period from September 2024 to December 2025. The median age of patients enrolled was 30 (IQR 21–41). The percentage of women in the study was 43%. CD was the diagnosis in 63% of patients. Advanced therapy was used in 56.3% of those included in the study. The majority of visits (around 75%) were considered as a follow-up visit, whereas the remaining 25% were new visits. One-third of the visits were attended by a resident or fellow. Patients were accompanied by a family member or a friend in one-third of the cases. The duration of visits was generally short, with a median of 3 min. Overall characteristics of patients and consultations are shown in Table 1.

Table 1.

Clinical characteristics of patients and visits

Patient	n=112 (%)
Age median (IQR)	30 (21–41)
Gender
-Male	64 (57)
-Female	48 (43)
Native language
-Arabic	110 (98)
-English	2 (2)
Patient’s highest level of education
-Elementary	5 (4.5)
-Intermediate	15 (13.4)
-High school	43 (38.4)
-University degree	46 (41)
-Master or PhD equivalent	1 (0.9)
-Missing	2 (1.8)
Disease assessment
Diagnosis
-Crohn’s disease	71 (63.4)
-Ulcerative colitis	41 (36.6)
CRP (within 6 months) median (IQR)	4 (1.3–13.9)
Fecal calprotectin (within 6 months) median (IQR)	361 (53–1000)
The patient received a corticosteroid course in the past 6 months
-None	78 (69.6)
-Yes	33 (29.5)
-Missing	1 (0.9)
Advanced therapies for IBD (biologics or small molecules)
-No	52 (46.4)
-Yes	60 (53.6)
Previous bowel surgeries related to IBD
-No	87 (77.7)
-Yes	25 (22.3)
Crohn’s disease	n=71 (%)
Age at diagnosis
<16	11 (15.5)
17–39	54 (76)
>40	6 (8.5)
Disease location
-Ileal (L1)	30 (42.3)
-Colonic (L2)	4 (5.6)
-Ileocolonic (L3)	37 (52)
Upper GI involvement
-No	62 (87.3)
-Yes	9 (12.7)
Behaviour of the disease
-Inflammatory (B1)	37 (52)
-Stricturing (B2)	14 (20)
-Fistulizing (B3) “other than perianal disease”	20 (28)
Perianal disease
-No	48 (67.6)
-Yes	23 (32.4)
Ulcerative colitis	n=41 (%)
Extent of the disease
-Proctitis (E1)	4 (9.8)
-Left side colitis/proctosigmoiditis (E2)	11 (26.8)
-Pancolitis (E3)	26 (63.4)
Visit	n (%)
Type of visit
-New	28 (25)
-Follow-up	84 (75)
Type of clinic
-Physical	100 (89.3)
-Virtual	12 (10.7)
Timing of the visit
-Morning	59 (52.7)
-Afternoon	53 (47.3)
-Evening	0
A family member or friend was present during the visit
-No	74 (66)
-Yes	37 (33)
-Missing	1 (1)
A resident, fellow, or trainee attended the encounter
-No	75 (67)
-Yes	37 (33)

CRP=C-reactive protein, IBD=Inflammatory bowel disease, IQR=Interquartile range, GI= Gastrointestinal

Level of shared decision-making

One hundred and five recordings were evaluated. The median OPTION-5 score was low, 5 out of 100 (IQR 0–10). The median of each of the five components of OPTION-5 score was extremely low, 0 out of 100. Three physicians contributed to the project. The number of consultations per clinician ranged from 31 to 38. The clinician with the lowest OPTION-5 score (31 consultations) had a median OPTION-5 score of 0. The clinician with the highest OPTION-5 score (38 consultations) had a median OPTION-5 score of 10.

Associations between the level of shared decision-making and characteristics of the clinician, patient and consultation

In a multivariate linear regression, the following factors were independently associated with higher total SDM scores: longer consultation duration in minutes (β = 1.88, 95% CI = 0.21–3.56, P = 0.028) and the decision to start a new medication (β = 24.86, 95% CI = 17.24–32.48, P < 0.001). A trend toward higher OPTIONS-5 scores were also noted with new patient visits, but no significant association was established (P = 0.056).

Other factors including CRP levels (P > 0.05) and history of prior IBD surgery (P > 0.05) demonstrated no significance. Remaining patient, physician, and visit characteristics did not demonstrate any significance.

Each β coefficient represents the expected change in the total OPTION-5 score (on a 0–100 scale) associated with a one-unit change in the predictor, while holding all other variables constant. Longer consultation duration was independently associated with higher levels of SDM, with each additional minute corresponding to an approximate 1.9-point increase in the OPTION-5 score. Whereas, consultations involving initiation of a new medication demonstrated markedly higher SDM, with an approximate 25-point increase in the OPTION-5 score compared to consultations without treatment changes.

Although new patient consultations showed a trend toward higher OPTION-5 scores, this did not reach statistical significance. Prior IBD-related surgery and CRP levels were not independently associated with OPTION-5 scores in the adjusted model.

Patient-reported experience

Using the SDM-Q-9 questionnaire, the majority of patients (83%) completely agreed that the decision on how to proceed was made in complete agreement with their physician. Seventy percent of subjects completely agreed that options had been discussed with their physician and risks versus benefits were weighed. About two-thirds of patients (68%) felt that their physicians were clear on the need to make a decision in their care [Figure 1].

Figure 1.

Distribution of shared decision-making questionnaire (SDM) response across items

Correlation between observer- and patient-reported measures

There was no significant correlation between observer-rated OPTION-5 scores and patient-reported SDM-Q-9 scores (Spearman’s ρ = –0.044, P = 0.687), indicating discordance between externally assessed and patient-perceived shared decision-making.

DISCUSSION

Patient-centered care and EBM have been widely adopted in health care. SDM is defined as the process where healthcare providers and patients come together using the best available evidence to choose the preferred treatment when more than one option is available.[8] In IBD, this is especially true with the accelerated emergence of therapeutic options.[7,4] These options have proven to be more effective than placebo, in their respective trials. However, there is a paucity of head-to-head trials comparing available advanced therapeutic options in IBD. Hence, most guidelines endorse several first-line therapies. The decision is further influenced by presence of any contraindications, previous exposures or drug failures, nature of disease, extraintestinal manifestations, and co-morbid conditions. When determining the final decision, a patient’s preference should be taken into account. Factors like mode of administration, dosing intervals, and major side effects may drive patients’ choices.[5]

There is limited evidence regarding the extent to which SDM can be applied in IBD. In this study, we evaluated the quality of SDM in gastroenterology clinics for IBD patients, in the Eastern Province of Saudi Arabia. The evaluation was conducted using the observer-based OPTION-5 scale, a reliable, validated measure used to assess efforts of clinicians to involve patients in decision-making.[12] It may be insinuated that physicians may increase efforts of SDM, knowing that the encounters are audio-recorded, leading to overestimation of SDM. However, earlier studies showed that clinicians’ behaviour was not influenced by the recording process.[8]

The median OPTION-5 score in this study was low, 5 out of 100. This concurs with what was detected in various studies evaluating the extent of SDM across different sectors of medicine.[12] In a systematic review to assess the level of SDM involving 29 studies, the average total OPTION-5 score was 23 (SD = 14). The review concluded that only a few health-care providers facilitate SDM, where only 38% of studies reported a mean OPTION-5 score ≥25.[13]

Upon analysis, longer consultation duration and the decision to start a new medication were associated with higher levels of SDM. This mirrored results from a study by Mathijssen et al., looking at SDM in rheumatoid arthritis patients, where longer consultation duration and the type of treatment decision (stopping and/or starting medication and adjusting medication doses) were also associated with a higher level of SDM.[12]

Longer consultation duration was proven to be associated with higher levels of SDM in multiple studies.[12,13] The duration of consultations in the study by Mathijssen et al. averaged around 9 min. In our study, the average duration of consultation was short in comparison, averaging around 3 min per visit. This shorter duration may explain the lower level of SDM detected in this study. This finding likely reflects structural healthcare delivery constraints rather than individual clinician behaviour. In the setting of public hospitals, clinics are typically overcrowded with limited appointment time, averaging 10 min per visit. This time may not be sufficient to discuss major decision changes, such as starting a biologic or going for surgery. On the contrary, it is quite sufficient for a follow-up of patients in remission who will continue the same therapy. Addressing this gap will likely require system-level interventions, including allocation of longer consultation times for patients with complex therapeutic decisions.

The presence of a family member during the consultation was not independently associated with OPTION-5 scores, indicating no observable impact on clinician-rated SDM within this cohort. It is not uncommon for patients to attend visits accompanied by a family member or friend. In this study, around one-third of patients came to the clinic with a companion. In Saudi Arabia, it is socially acceptable for family members to actively partake in the decision-making process. The presence of another person during clinic visits may prompt more questions and concern, however this occasionally leads to alterations in the management plan. In fact, no significant relation was detected on regression analysis between the presence of a companion and the quality of SDM in our study.

In this era of patient-reported outcomes, SDM should be assessed from a patient’s perspective as well. Using the SDM-Q-9 questionnaire, patients in our study evaluated their own encounters. Around one-third of patients were not aware that a decision was being made during their clinic visit; however, the majority believed that they were in agreement with their physician regarding the decision that had been made.

The discordance observed between observer-rated and patient-perceived shared decision-making in our study may be explained by patients’ misconceptions of what SDM is. Patients also tend to rely on the way they felt during the consultation for evaluation. This can be swayed by aspects, like the tone of voice and empathy of the clinician.[8]

Despite the higher level of education reported in this study, with about half of patients being university graduates, it did not seem to affect SDM-Q-9 results. This reaffirms the idea that patients may be more concerned with their physician’s warmth and considerate approach than genuine SDM.

It is possible that patients with higher educational attainment may prompt more participatory communication behaviours from clinicians, thereby influencing the dynamics of the consultation. However, this relationship was not formally examined in this study and should be interpreted with caution.

The cross-sectional design of the study limits the ability to infer causality between identified factors and the level of SDM. Although it was a multicenter study, it included only three physicians from public hospitals in the Eastern Province. This limits the generalizability of the findings and its applicability to other regions and practices. Therefore, these findings should be interpreted at the consultation and patient level within this cohort, without inference to broader clinician-level effects.

All clinical encounters were independently evaluated by two gastroenterologists to enhance objectivity. However, in the absence of reported inter-rater agreement metrics (e.g., intraclass correlation coefficient or kappa statistics), the ability to assess the consistency and reproducibility of observer-based scoring is limited. This is a key limitation of this study, as the OPTION-5 score relies on observer assessment; the lack of reliable data limits confidence in the precision of measured scores, and findings should therefore be interpreted with caution.

Patients’ preferred level of involvement in decision-making was assessed in various studies. In a Dutch study involving 1067 patients, 81% called it “very important”, and 17% rated it as “quite important.”[14] Another study conducted in Japan, found that the majority of IBD patients desired to have a role in their treatment plan. This preference seemed to be driven by the severity of the disease.[3]

Although not assessed in this study, multiple studies have been conducted in Saudi Arabia assessing patients’ preferences and awareness in SDM. In a study by AlHaqwi et al. that included 236 participants, SDM was preferred by 57% of patients.[15] Another study conducted in Saudi Arabia aimed at assessing patients’ awareness and preferences. It concluded that the higher the awareness of patients, the higher the preference for SDM.[16] Hence, the role of SDM in this study may be interpreted within the broader sociocultural context of healthcare delivery in Saudi Arabia, despite the traditionally followed paternalistic model of physician–patient interactions.

Moreover, patient satisfaction was not formally or systematically evaluated. It can only be indirectly inferred from the high SDM scores assessed by patients.

To our knowledge, there are no published studies that have specifically examined the level of SDM in IBD in Saudi Arabia. Accordingly, this study provides novel insights into real-world SDM practices in IBD and highlights important gaps between perceived and observed patient involvement.

The uniformly low observer-based SDM scores identified in this study underscore the need for deliberate, system-level strategies to embed SDM into routine IBD care. Given the limited consultation time in busy gastroenterology clinics, SDM cannot rely solely on individual clinician effort. The integration of brief, structured SDM prompts within clinical encounters, coupled with the use of IBD-specific decision aids delivered before or during visits, may facilitate more effective patient engagement without prolonging consultations. A pragmatic approach to improving SDM in real-world practice, pre-visit education and providing longer appointments for patients with complex treatment decisions may be effective.

National initiatives under Saudi Vision 2030 place strong emphasis on patient-centered care, quality improvement, and enhanced patient engagement as core components of healthcare delivery. In this context, the limited observable SDM identified in our study highlights an important gap between current practice and these strategic priorities. The interventions proposed in this study, including allocation of longer consultation time for complex cases and pre-visit education, need to be addressed not only at the level of individual clinician behaviour, but also at a system-level to help attain these national goals.

In summary, in this cohort of patients with IBD from three centers in the Eastern Province of Saudi Arabia, observer-rated SDM was low. The quality of SDM was influenced by longer consultation time and initiation of new therapy. On the contrary, patients reported higher perceived involvement, suggesting a potential mismatch between externally assessed and patient-perceived SDM. Given the inclusion of a small number of physicians and the exploratory nature of the analysis, these results should be interpreted within the context of this cohort and may not be generalizable to broader clinical settings. Further studies in larger and more diverse populations are needed to better understand the determinants of shared decision-making and to inform strategies for its effective implementation in routine IBD care.

Conflicts of interest

There are no conflicts of interest.

Funding Statement

Nil.