This was a multi-center study, which aimed to investigate the decision-making status of Chinese IBD patients and examine the effects of different actual decision roles and different levels of decisional conflict on compliance, satisfaction, quality of life, and psychological status (anxiety, depression, and sleep status) of IBD patients. Factors affecting decisional conflict were also studied, along with patients’ decision needs, decision barriers, and treatment goals. Results of the study revealed that after propensity score matching was used to balance baseline variables, SDM may improve IBD patients’ understanding of the disease, and reduce decisional conflict and the impact of IBD on work/study. Furthermore, CSDC may reduce patient satisfaction with physician interpretation and treatment, compliance, quality of life, and increase patients’ decision regret, anxiety, depression, and sleep disorders. Findings of the study also showed that active disease, non-shared decision roles, and poor physician communication quality were major predictors of CSDC. These correlations have not been reported in previous studies.
Decision roles
In this study, 43.6% of patients preferred a shared decision role, but the decision roles of only 32.2% of patients were actually shared. The agreement between actual and preferred decision roles was general, indicating a gap between patients' preferred and actual decision roles. The Institute of Medicine recommends SDM and adaptation of patient preferences to improve overall healthcare quality, in which, the engagement and activities of patients are necessary to improve health outcomes and are an element of the chronic care model25. Previous studies have reported benefits of the patient’s participation, such as higher quality of physician communication, compliance, and overall health benefits3, 26.
As previously mentioned, this study found that patients who preferred shared decision roles accounted for the largest proportion, and those who actually had shared decision roles showed higher levels of disease knowledge, lower DCS scores, and reduced impact of IBD on work or learning. It is well recognized that SDM can reduce DCS. Improving the impact of disease on work and learning may be because SDM improved patients' knowledge level, and improved patients' self-management of disease, thus reducing the impact of disease on work or learning. However, different from our assumption, there was no significant difference in patients' compliance, mental health status, and quality of life between the SDM group and the non-SDM group. We speculate that this may be because SDM is not well implemented in clinical practice. Self-assessment by patients of their involvement in the decision-making process may not accurately reflect the actual level and quality of participation. They may not have a clear understanding of the risks and benefits, and treatment decisions may not adequately reflect their preferences, resulting in no significant improvement in decision regret and treatment adherence, and correspondingly no improvement in health outcomes. Therefore, it is important to identify effective means to improve the quality of decision-making among patients with IBD and to conduct high-quality prospective studies to confirm the benefits of SDM for patients with IBD. Despite the limitations of the current study, the benefits of SDM cannot be denied, and physicians should continue to encourage patients to actively participate in the care and clinical decision-making process, while taking into account their individual preferences and needs.
Decisional conflict
In this study, the median total DCS score was 27, which was higher than the level of decisional conflict associated with a previous decision on biologics for pediatric patients27. Additionally, about 20% of patients experienced CSDC, and the actual decision-making role, physician communication, and disease activity were independent influencing factors of decisional conflict. Patients who preferred non-shared decision roles, had lower physician communication quality, and higher disease activity were more likely to experience CSDC. Findings from a Singapore survey of decision conflict in dialysis patients with chronic kidney disease also showed that decisional conflict was strongly associated with the quality of communication by healthcare providers and patient participation in decision making28. This highlights the importance of encouraging patients to participate in treatment decisions, and improving the quality of physician communication in clinical practice. Interestingly, the study found that after adjusting for various factors, disease knowledge did not show a significant correlation with decision conflict. This finding is consistent with a study on the conflict of decision-making in breast reconstruction among breast cancer patients29, suggesting that making a treatment decision for IBD may create uncertainty for the patient regardless of their prior knowledge. Decisional conflict may be more closely related to the perceived knowledge of patients rather than their actual knowledge. However, the studies on decisional conflict predictors are limited and heterogeneous, with many of them focusing on cancer, making it difficult to compare the results of this study with those reported in previous research. Further studies are needed to explore predictors of decisional conflict and identify effective means to reduce it in patients with IBD30.
Decisional conflict, a common indicator to evaluate the quality outcome of SDM, was closely related to decision regret, treatment, and communication satisfaction31. In this study, patients in the CSDC group not only showed higher decision regret, lower satisfaction and compliance, but they also showed higher disease activity, anxiety, depression, sleep disturbance, and lower quality of life. When a patient feels uncertain after making a decision and wants to know whether the chosen scheme is the best choice, the patient might have a poor decision-making experience, dissatisfaction with the decision and regret32, which may lead to poor compliance12, 33. Moreover, these patients may pose potential obstacles to SDM and increase their uncertainty about decisions, forming a negative cycle. The non-SDM approach in decision-making also increases conflicts in the decision-making of patients, forming a bad cycle. Previous research has shown that decisional conflict can be exacerbated by anxiety and depression, and vice versa 29, 33. When patients are uncertain and regret existing decisions, anxiety, and depression may be exacerbated. Compared to the general population, patients with IBD may have a higher risk of depression and anxiety34, leading to a decrease in the quality of life, an increase in the frequency of disease activity and the probability of complications35, and a reduced likelihood of successful treatment36. These factors also complicate the clinical management of IBD and might result in more significant medical-related costs37. Even without overt inflammation, IBD patients with depression and anxiety are more likely to report problematic symptoms38. Therefore, the effects of CSDC on patients not only translate into a poor decision-making experience and psychological distress, but they also indicate poor quality of life. Similar results have been reported in studies on decision conflict in diabetes12 and prostate cancer39.
The correlations between psychological distress and decision uncertainty have been studied in other chronic diseases; however, the current study extended this and established a specific and novel correlation between decision conflict and psychological distress as well as reduced quality of life structure in IBD patients. This is clinically relevant as IBD patients are particularly vulnerable to psychological distress, quality of life problems, and conflicts over decisions. Specifically, treatment regimen distress stemming from the many self-care needs faced by IBD patients might be the most significant factor of IBD-related psychological distress and lower quality of life. Due to the importance of the physician-patient relationship in the decision-making process, poor communication between physicians and patients might also lead to decision-making conflicts. Therefore, further elucidation of the correlations between decision conflict and psychological distress as well as the quality of life of IBD patients might help in understanding the sources of decisional conflict. Our results also show the importance of improving decision conflict, and the use of decision AIDS may be an effective means, which has been validated in multiple high-quality studies40–42.
Decision needs, decision barriers, and treatment goals
To improve the quality of decision-making, the patient’s decision needs, dilemmas, and treatment goals must be understood. Information is the basis of treatment decisions; due to the asymmetry of information among medical specialties and between doctors and patients, there is a continuous demand for obtaining information from patients during diagnosis and treatment, especially for taking treatment decisions. Both newly diagnosed patients and those with long-term IBD felt that it was important to receive information on a wide range of topics, while in fact, most patients said they received little or no information in many areas, which they considered very important. Numerous patients, especially at the beginning of their illness, do not fully know what information they need about their illness, and even patients who clear their information needs are not satisfied23. In this study, IBD patients had a rich information need, including drug effects, non-drug treatment options, research progress, and basic information. The patient-reported decision barriers also included an inability to judge the quality of IBD information. Other barriers included unclear decision timing and lack of understanding and support from others. These decision needs and barriers further demonstrate the importance of designing IBD decision AIDS that can provide patients with a wealth of quality-assured decision making information. The patients have expectations about the plan while making decisions. They experience feelings of regret and disappointment when the treatment outcomes do not meet their expectations, which can have an impact on subsequent treatments. A recent systematic review showed that the major patient’s expectations included symptom and pain control, quality of life, and normal endoscopy; this was consistent with the results in the current study. In this study, more than half of the patients wanted to achieve treatment goals, including being able to eat normally, not interfering with normal work, and reducing abdominal discomfort. However, the results of current IBD treatments are unsatisfactory, and the clinical response and remission rate of biological agents with relatively good efficacy are also lower than 50%43, and most of them lose their effectiveness over time. Therefore, in decision-making, medical personnel should have full communication with patients and appropriately reduce their expectations
Limitations and advantages
There are several advantages of this study. First, this study comprehensively considered the effects of variables, such as age, education, income, employment, ethnicity, marital status, IBD course, and complications on decision preference, decision conflict, psychological distress, and quality of life and screened for possible confounding variables as far as possible. Second, each outcome was relevant to disease control in IBD; therefore, these results have the potential to improve clinical outcomes. Third, while optimal inflammation control is a core goal of IBD care, the quality of life and mental health are increasingly relevant, and patient-centered outcomes are positively correlated with fewer relapses and IBD complications. Fourth, the IBD patients in the current study were recruited from multiple IBD centers with a sample size of over 600, and the results are representative. However, this study has certain limitations as well. For example, IBD-related inflammatory markers and colonoscopy findings were not evaluated, which limited the clinical significance of this study, and there might be a potential response bias due to the patient self-report questionnaires. Due to the observational nature of this study, only the correlations were revealed and not the causes or mechanisms. Still, this is the first study to report the correlations of decision conflict with the quality of life and mental health of IBD patients, which have not been reported in previous studies. In addition, this study also explored the factors affecting decision conflict.
Implications for research, practice, and subsequent steps
This study aimed to explore the correlations between the quality of decision-making and health outcomes in IBD patients, which might contribute to improving the quality of life and better patient-centered care. In addition, longitudinal intervention studies should be conducted to determine the causal correlations between the quality of IBD patient’s life and decision participation, physician communication, decision conflict, and psychological status. For example, follow-up studies should assess the effects of decision support on patients' decision conflicts and improvement in clinical outcomes. This might provide additional support for the importance of the chronic care model in IBD care.