Shared Decision Making in Inflammatory Bowel Disease
Shared Decision Making in Inflammatory Bowel Disease
The treatment of inflammatory bowel disease is becoming more complicated with new medications and new treatment paradigms. Although data are accumulating that the earlier use of immunomodulators and anti-tumor necrosis factor agents are more effective than the standard "step-up" pyramidal treatment algorithm, patients may not be comfortable with this more intensive therapeutic approach. The process of shared decision making engages patients in treatment decisions to optimize the chance that a chosen therapy matches their personal preferences for care. Decision aids are standard shared decision making tools, which are used to present evidence-based data in a patient-friendly manner to help patients with preference- sensitive decisions. Not all care decisions are preference-sensitive, and not all patients are interested in being part of a shared medical decision. The responsibility of the provider is to identify how much of a role patients want, and then determine which decisions need their input to provide the best patient-centered care. The overall goal is to involve patients in decisions so that they are educated about their options, confident in the plan, adherent to chosen therapy and ultimately have a better quality of life.
Treatment options for inflammatory bowel disease (IBD) are getting better, but decisions for patients are getting more difficult. The paradigm of starting with mild medications for mild disease and escalating therapy once steroid dependence or complications develop was not an effective clinical approach, but it was easy to understand for patients. It was the 'punishment fits the crime' approach, which seemed to make sense from a logical and financial standpoint. When anti-tumour necrosis factor (anti-TNF) agents were first approved for use in 1998, they were reserved for the sickest patients with 'moderately to severely active disease who have had an inadequate response to conventional therapy' and introduced after all other treatments failed. With that approach, based on large registration clinical trials, the 1-year remission rate after including all patients who received therapy was approximately 20%. It took over 10 years to show that substantially higher rates of remission were possible, but only if initiating anti-TNF therapy in combination with a thiopurine and only in patients who were recently diagnosed and had not had a chance to fail 'standard therapy'. Today, anti-TNF therapy has become standard treatment, but barriers exist in preventing its widespread adoption for early intensive ('SONIC-like') use. Financial barriers are variable depending on the geographical location, but universally consistent is patients' worry about side effects and the feeling that they do not deserve such strong therapy early on in their disease course. More than ever, patients are more educated and sophisticated researchers on the benefits and risks of IBD therapy. The days of paternalism are over and patients want a sense of control in their disease management. The most appropriate way to engage patients to make an informed decision that is consistent with their values is to promote the practice of 'shared decision making'.
Abstract and Introduction
Abstract
The treatment of inflammatory bowel disease is becoming more complicated with new medications and new treatment paradigms. Although data are accumulating that the earlier use of immunomodulators and anti-tumor necrosis factor agents are more effective than the standard "step-up" pyramidal treatment algorithm, patients may not be comfortable with this more intensive therapeutic approach. The process of shared decision making engages patients in treatment decisions to optimize the chance that a chosen therapy matches their personal preferences for care. Decision aids are standard shared decision making tools, which are used to present evidence-based data in a patient-friendly manner to help patients with preference- sensitive decisions. Not all care decisions are preference-sensitive, and not all patients are interested in being part of a shared medical decision. The responsibility of the provider is to identify how much of a role patients want, and then determine which decisions need their input to provide the best patient-centered care. The overall goal is to involve patients in decisions so that they are educated about their options, confident in the plan, adherent to chosen therapy and ultimately have a better quality of life.
Introduction
Treatment options for inflammatory bowel disease (IBD) are getting better, but decisions for patients are getting more difficult. The paradigm of starting with mild medications for mild disease and escalating therapy once steroid dependence or complications develop was not an effective clinical approach, but it was easy to understand for patients. It was the 'punishment fits the crime' approach, which seemed to make sense from a logical and financial standpoint. When anti-tumour necrosis factor (anti-TNF) agents were first approved for use in 1998, they were reserved for the sickest patients with 'moderately to severely active disease who have had an inadequate response to conventional therapy' and introduced after all other treatments failed. With that approach, based on large registration clinical trials, the 1-year remission rate after including all patients who received therapy was approximately 20%. It took over 10 years to show that substantially higher rates of remission were possible, but only if initiating anti-TNF therapy in combination with a thiopurine and only in patients who were recently diagnosed and had not had a chance to fail 'standard therapy'. Today, anti-TNF therapy has become standard treatment, but barriers exist in preventing its widespread adoption for early intensive ('SONIC-like') use. Financial barriers are variable depending on the geographical location, but universally consistent is patients' worry about side effects and the feeling that they do not deserve such strong therapy early on in their disease course. More than ever, patients are more educated and sophisticated researchers on the benefits and risks of IBD therapy. The days of paternalism are over and patients want a sense of control in their disease management. The most appropriate way to engage patients to make an informed decision that is consistent with their values is to promote the practice of 'shared decision making'.