In the treatment of people with Parkinson’s disease, one of the most valuable tools is the people themselves. Empowered patients who ask questions, who observe and share how their symptoms change are partners in optimizing their treatment. Recently I became involved with a new program launched by The Michael J. Fox Foundation for Parkinson’s Research (MJFF) and AbbVie called “Partners in Parkinson’s” to help patients realize how much power they have in their own care. The initiative provides resources and support to Parkinson’s patients and caregivers, helping them navigate the progression of the disease.
As we ask patients to be our partners in their disease management, however, we must also consider how we can best work with patients. By arming patients with the resources they need to make informed decisions about their own care, we can be a true teammate on their roster of health care professionals.
SPECIALISTS CAN SHARE NUANCED INFORMATION
One player every person with Parkinson’s should consider calling on is a movement disorder specialist. A Harris Poll survey conducted by MJFF and AbbVie of 1,500 patients, caregivers and physicians highlights the impact of connecting people with Parkinson’s with specialists trained in movement disorders.
More Parkinson’s patients seeing a movement disorder specialist reported feeling informed about their disease (89 percent) than did patients seeing a primary care physician (47 percent) or general neurologist (71 percent) for their Parkinson’s care. Patients of movement disorder specialists also said they feel more informed on where to turn for support, how to connect with the Parkinson’s community and how to get involved in clinical research.
Despite these reports, a dismal 28 percent of Parkinson’s patients are currently seeing a movement disorder specialist. Fewer than half (48 percent) could identify the definition of a movement disorder specialist from a multiple-choice list.
What can we do? For one, we can talk to patients and educate them about the existence and benefits of seeing such a specialist.
I’m certainly not here to say that neurologists and primary care physicians shouldn’t treat Parkinson’s disease (PD), as many do so with great competence. In addition, there may be geographic constraints that are problematic (although see patient perceptions below), and the reality is there aren’t enough movement disorder specialists to manage the unfortunately growing number of people with Parkinson’s. But consider referring your patients for an adjunct appointment.
It’s a numbers game: movement disorder specialists see many more Parkinson’s patients, some almost exclusively. It’s natural that they’ll be more versed in the latest clinical trials or local resources, and have more experience with difficult management issues.
PHYSICIANS ARE GATEKEEPERS TO A CARE TEAM
Treating physicians are the gatekeepers to patients building their care team. The majority (74 percent) of patients surveyed who have heard of or seen a movement disorder specialist reported having learned about the specialist from their personal physician. Similarly, most movement disorder specialists report that physician referral is how most patients reach them.
However, primary care physicians reported referring less than half of their PD patients to a movement disorder specialist (44 percent), and neurologists referred only 20 percent of their patients.
We know, too, that patients want to hear about specialty care. About a third of patients and caregivers feel that a barrier to seeing a movement disorder specialist is that their physician has not recommended it, compared with only two to three percent of neurologists and primary care physicians who share this belief.
The survey revealed other illuminating findings on perceived barriers. Physicians surveyed tended to overestimate logistical barriers for patients, such as difficulty traveling, which 56 percent of primary care physicians but only 16 percent of patients viewed as a barrier. Primary care physicians and neurologists also overestimated how satisfied patients are with their current care, and therefore may be less apt to refer a patient to a movement disorder specialist.
I encourage regular communication with patients and their caregivers to ensure the most complete understanding of a patient’s situation and to strategize to overcome barriers to optimizing care. These conversations help determine personalized recommendations on how patients and their caregivers can make informed decisions around their care.
Recommendations to Parkinson’s patients and caregivers are of great importance to help them feel empowered, informed and connected to the resources and support they need. We help our patients most when we, as the physician community, work together as a unified care team.
A GAP EXISTS BETWEEN ALLIED CARE REFERRALS AND APPOINTMENTS
The barriers conversation should include obstacles to seeing allied care professionals. Care team members such as physical, occupational and speech therapists can exponentially impact patient outcomes.
Physicians are referring patients to these professionals, the survey showed. More than half of clinicians (52 percent) reported they discussed allied care at each or most patient appointments. However, significantly fewer patients (30 percent) report the same, and in fact very few patients have ever visited many allied care professionals. For example, only 24 percent have ever seen an occupational therapist and a slightly better, though still too few: 51 percent have been to a physical therapist. Despite the high frequency of psychiatric and mood complications in Parkinson’s, only 32 percent have seen a mental health professional.
Again, here, communication is key to confirm that the patient has heard and understands the referral and its rationale and to uncover any barriers to following through with an appointment so that together you can mitigate those challenges.
Providing patients and caregivers with information on resources at their disposable empowers them to make their own, informed decisions on treatment, care and support.
We as physicians are not only a member of a patient’s care team, but a conduit to building that team. Let’s help patients participate in optimizing their health and wellness by participating, too.
James B. Leverenz, MD is at the Cleveland Clinic Lou Ruvo Center for Brain Health.