Tinnitus is a highly prevalent condition that affects 10 to 15 percent of adults, with three to five percent finding it distressing (Tinnitus Handbook, 2000). The care of tinnitus has traditionally been determined by clinicians for their patients (BMC Med Inform Decis Mak. 2012 Jul 12;12:70). To help shape the decisions clinicians make when managing patients with tinnitus, a set of clinical practice guidelines was developed (Otolaryngol Head Neck Surg. 2014 Oct;151(4):533). These guidelines provide information on the average population merits of different interventions and summarize available evidence on treatments, among others. But these guidelines have significant limitations (BMJ 2016;353:i2452). They tell us about findings that relate to patients like ours but not to our patient. A frequently overlooked aspect of evidence-based health care is that it is an integration of clinical experience, best evidence, and patient values and preferences. However, the last point is often overlooked. Guidelines should remind us to also connect and share information with our patients, but they tend not to.
DANGERS OF SILENT MISDIAGNOSIS
Tinnitus is an intensely personal and subjective experience. It fits intimately into an individual's life. Therefore, the preferences about how to manage tinnitus are unique to each individual whose care should be personalized. Evidence clearly suggests that when patients are informed about the pros and cons of available treatments and encouraged to take an active role in evaluating options and making important decisions, they benefit more from the chosen treatment (Cochrane Database Syst Rev. 2017 Apr 12;4:CD001431).
In many cases, clinicians try to engage patients by providing verbal descriptions of treatment options and in the process make assumptions about which treatment will work best (Int J Audiol. 2016 Nov;55(11):658; Clin Otolaryngol. 2018 Sep 17. doi: 10.1111/coa.13228). The problem with this approach is that the best intention to use the right treatment (in other words, the treatment that works well for most people most of the time) can lead clinicians to prescribe, rather than negotiate, treatments. If this is not negotiated with the individual who will have to live and work with the prescribed treatment, there is a risk of “silent misdiagnosis,” which occurs when one (a clinician in this case) unwittingly causes significant harm to another person's quality of life by misdiagnosing—not the person's original condition—but what that person wants to do about the condition (Mulley, Trimble & Elwyn. The King's Fund, 2012). Rarely do patients with a silent misdiagnosis bother their clinicians. They become dissatisfied, possibly seek help elsewhere, or remain silent, leaving clinicians unaware that the whole treatment process has failed.
As the mechanisms behind tinnitus treatments vary, a one-size-fit-all treatment is unlikely. It makes more sense to explore available treatments with the patient and determine what might be the best approach for him or her as an individual.
BENEFITS OF A DECISION AID
Between 2016 and 2018, a series of studies were conducted to investigate the individual preferences of patients for their tinnitus care and the information patients need to make the necessary choices (Int J Audiol. 2018 in press. DOI 10.1080/14992027.2018.1484184). We observed and recorded how clinicians present treatment options and how their behavior contributed to patient outcomes (Br J Health Psychol. 2018 Sep;23(3):630). Using the gathered information, we developed a tinnitus decision aid through an iterative process summarizing the best evidence and articulating the patients’ frequently asked questions (Int J Audiol. 2018 May 9:1). The drafted decision aid was amended in response to patient feedback and user-tested in clinical practice.
The tinnitus decision aid offers a way to comparatively present complex information on treatment options and evidence summaries. This one-page document conforms to international consensus standard, and may be sent to patients in advance so they can discuss their options with family and friends (watch videos on the decision aid benefits online: http://bit.ly/2zucfxX). Patients can arrive at their doctors appointment already well informed about their treatment options and perhaps with a decision on a preferred treatment that would work best for them. This allows for clinical time to be devoted to a deeper discussion about the patients’ values and preferences. Victor Montori of the Mayo Clinic calls this process “an empathic conversation by which patient and clinician think, talk, and feel through the situation and test evidence-based options against the patient's situation… Shared decision-making is a human expression of care” (Montori. The Patient Revolution, 2017).
Shared decision making may be difficult for some clinicians (Int J Audiol. 2016). The process generally requires a clear acknowledgement of the choices to be made and the roles of each party in making these choices. Clinicians must demonstrate the core skill of listening to the patient's preferences, which can be harder than it sounds, especially if the patient's preferences are not aligned with the views of the clinician. However, note that the patients are the ones who must live with the consequences of the chosen treatment, so it is vital that they make this decision.
The decision aid also confers a partnership arrangement, which has been associated with greater patient commitment and satisfaction (Cochrane Database Syst Rev. 2017). Shared decision-making can be a challenging component of clinical care, but having a decision aid should help clinicians and patients work together in determining the best individual approach to tinnitus management.