How Can Healthcare Providers Better Advocate for Patients With CRPS?
Mr. Broatch: First, healthcare providers must believe that the patient’s pain is real. In some patients, the pain severity may be higher than that conferred by amputation, cancer pain, or childbirth. Thus, complex regional pain syndrome (CRPS) can be an incredibly debilitating disease.
Second, multidisciplinary treatment of CRPS is essential for optimal outcomes. Therefore, healthcare providers must work with each other, and the patient, as a team.
Whether you are an anesthesiologist, neurologist, pain specialist, or primary care physician, you should also include a physical therapist, occupational therapist, pain psychologist, and possibly a vocational specialist on your management team.
Unfortunately, medical care often is fragmented in the United States. People with CRPS often tell us that physicians don’t spend the time to educate them and that they feel dismissed. In addition, many of the treatments considered effective for CRPS (eg, biofeedback, acupuncture, psychotherapy) typically are not covered by health insurance.
This may be the reason why we see a lot of patients with CRPS taking long-term opioid therapy, even though opioids are not considered a first-line option for this condition. If patients cannot afford treatment, what are we going to do to treat their pain?
While we know opioids may not be the best treatment option for these patients, unfortunately, following release of the Centers for Disease Control and Prevention guidelines,1 we saw many patients summarily removed from opioid therapy but not given an adequate alternative therapy. This is not responsible prescribing.
Why is mental health an important component of treatment?
Mr. Broatch: Patients with CRPS have high rates of psychiatric comorbidity. A survey hosted on the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) website found that 77.2% of patients reported feelings of depression and 78.2% reported periods of anxiety.2 Alarmingly, half of the patients (438/888) reported having considered suicide at some point during the course of their illness, with 66 (15.1%) of these patients attempting suicide.2
If a patient does not have access to a pain psychologist, how can healthcare providers help?
Mr. Broatch: If mental health is not included in a patient’s treatment plan, the healthcare provider should assist the patient in establishing a social support. Patients suffering from chronic pain frequently find that their social network becomes tattered. Some people cannot return to work or may have to cancel social engagements so often that friends eventually go away.
The RSDSA has a small patient assistance fund that we have used in the past to help patients with CRPS pay for counseling. In addition, we can use our social network to help physicians identify a pain psychologist in their local area.
In addition, the RSDSA helps patients find support groups in their area or helps patients start a new support group. Our conferences also provide patients with social support as well as education about CRPS and its treatments. Often, patients with CRPS have never met another person with this condition before coming to our conference.
What other services does the RSDSA provide?
Mr. Broatch: We publish an electronic and print newsletter to keep patients informed of the latest CRPS advances. Also, we provide referrals to physicians who specialize in treating CRPS. Not only do we offer conferences for people with CRPS and their caregivers, but we also hold scientific conferences for healthcare providers. Our most recent conference focused on the use of ketamine for the management of treatment-refractory CRPS.