Communication is a cornerstone of the doctor-patient relationship. Consider the initial encounter that comes with the MDS diagnosis. Out of the time allotted for a consultation, no more than 10 minutes is consumed by the physical exam, paperwork, or other activates related the visit, whereas the vast majority of the time is dedicated to a conversation about the events leading to the patient’s diagnosis, followed by a discussion of what that diagnosis implies, prognosis, and treatment options. Yet, as the Irish playwright George Bernard Shaw put it, “The single biggest problem in communication is the illusion that it has taken place.” For example, surveys conducted with the help of the AAMDSIF have pointed out the differences between physicians and patients regarding the perception of what the diagnosis and treatment of MDS entails both at the time of diagnosis and over a patient’s disease course.
It goes without saying that the selection and timing of treatment are critical decisions, typically made in collaboration between the physician and patient. How this decision process is shared can vary from encounter to encounter, when over the course of a conversation, patients and their physicians arrive at an (often unspoken) agreement. Patients may prefer to take a more passive, collaborative, or active role in the decision making process. With respect to this decision making process, are physicians on the same page as their patients? Caocci, and collaborators from Europe and the US, examined decision making between 280 newly diagnosed MDS patients paired with their physicians. They found that only half the time, the physician’s perception was in line with their patient’s preferred degree of involvement in treatment decisions. For 45% of the patients that preferred a passive role, physicians thought that the patient preferred a more collaborative or active role. Physicians’ attitude toward patients’ involvement in treatment decisions was influenced by whether or not the patient was thought to have a poor health status. However, they found that physicians’ perceptions and patients’ reporting of health status were in agreement less than a third of the time, and that physicians were more likely to overestimate the health status of patients who report a lower-level heath status.
Caocci and colleagues also found that physicians’ attitude toward patients’ involvement in treatment decisions was influenced by whether or not the patient asked for prognostic information. Although a patient may be engaged during the consultation with their doctor, they may not have a proper framework in which to construct a dialogue useful to them. Along those lines, Mancini and colleagues developed and evaluated a targeted question prompt list (QPL) for use when patients meet with their doctors at the time of diagnosis and start of treatment. The QPL was made up of 53 questions that patients may ask their doctor. In total, 301 patients and 53 physicians from France and Australia were provided the QPL to review. In general, all of the questions were felt to be useful, but 10 were identified as particularly helpful, with the top 3 focusing on the risk of progression to leukemia, the impact of treatment on the chances of survival, and the severity of the MDS. In general, the QPL was perceived as absolutely useful by nearly two thirds of respondents (both patients and caregivers). Furthermore, only a small minority felt that the QPL would disrupt (3.9% absolutely, 17.8% maybe) the discussion between the doctor and patient.
Where the study by Caocci and colleagues highlights the discordance in physicians’ perception and a patients’ preferred role in the decision making process, QPL’s, may help improve dialogue during a doctor’s visit. Not only can discussion templates, such as QPLs, help to replace Shaw’s “illusion” that communication takes place with reality that it does, they can help patients get the right amount and most relevant information for them.