As a current and a former member of the American Psychological Association’s panel to produce guidelines for treating posttraumatic stress disorder (PTSD), we had a lot to think about. That’s because although the evidence base strongly suggests there are several psychotherapies that can significantly reduce PTSD symptoms, there is a gaping lack of input--in research and in clinical inquiry--from trauma survivors themselves. We’re missing the patients’ perspective on what outcomes matter to them, what their goals and priorities for treatment are, and what they are willing and able to do to participate in these therapies. That’s a huge absence, although fortunately the situation may be gradually changing.
The good news is that despite the glaring omission of patients’ input we’re closing in on a few effective psychotherapies for PTSD. It’s important to develop several treatments because research consistently shows that there’s no one best treatment for PTSD, no one-size-fits all, no magic bullet. Treating PTSD isn’t easy, but it can be highly successful, and for a disorder which haunts up to 10% of Americans, that’s something remarkable to celebrate and news which needs to be spread.
The push to develop and disseminate effective PTSD treatments is great news for individuals who have experienced abuse in childhood and carried their psychic burden well into adulthood; for combat veterans who fought for their country but struggle decades later to find their way home; for women who served proudly in the military, only to be subjected to sexual assault by the men they served with; for victims of random acts of violence and horrific accidents; and for individuals who directly experienced acts of terror. Thousands of people can now benefit from the PTSD treatments that have been developed in the relatively calm centers of academia.
Still, we need to do better, and for that we need to talk with the people who are most affected. This lack of input from those who suffer is not unique to PTSD or mental health. Frankly, patient input is lacking from the entire health care system. Although there is talk in the health care arena about making patients partners in their own care, it seems to translate into merely helping patients have a better understanding of the currently available care options for their specific disorder. This approach feels a bit one-sided, unidirectional, and hierarchical. It ignores input from the largest expert cohort of all--those who are afflicted.
This may be one reason why so many trauma survivors wait decades before seeking help, and many more do not receive effective treatment. There are a host of other reasons for this as well, including denial or minimization of problems, avoidance of trauma memories and reminders, stigma, and wanting to solve problems on one’s own. Those barriers all need to be addressed. But perhaps an important way to improve mental health treatment seeking and engagement is by empowering survivors.
If we want trauma survivors to be active participants in their own mental health care, to help them make more informed decisions, we need to invite them to do more than listen to the options we presently have for them. We need to ask them important questions about those options and let them point out to us options we haven’t thought of. And we need to listen.
This is particularly important for trauma survivors, who don’t always realize they have a voice due to the perceived loss of control that often accompanies traumatic exposure. Survivors’ voices are often taken away or they have become unable to speak. Trauma survivors should be able to use their voices, however they talk, whatever dialect they use, community slang, Queen’s English, or Ebonics, to articulate what they need for themselves.
Many people are socialized to listen to their doctors, let them set the goals, and give the orders. Physicians and psychotherapists who buy into this treatment paradigm may be the same ones who wonder how articulating and including trauma survivors’ goals in treatment trials and services can improve outcomes. But patient preferences impact how engaged people are in their therapy and how much and well they benefit. If there is a mismatch between patients’ preferences and what they actually receive there is a greater chance for them to drop out, attend fewer sessions and receive less benefit from treatment.
Authorized by Congress as part of the Patient Protection and Affordable Care Act of 2010, the Patient-Centered Outcomes Research Institute (PCORI) may provide the remedy we are looking for. Through 2019 PCORI will receive $3.5 billion of federal dollars to sponsor research to determine the best ways to help patients and their providers collaborate in shared decision-making. As we wait for that research on patient-centered care, if our trauma patients tell us they don’t want to do the psychotherapies we have to offer, let’s honor them and build the treatments they do want.