I recently saw a 6-year-old girl referred to rheumatology. Her parents noted a swollen knee when they went hiking on vacation. She was in recreational soccer but neither she nor her parents could recollect any falls or injuries or pain with playing. She had some morning stiffness but not much of pain. After returning from the vacation which had been cut short, she was seen by her PCP who sent her to the ER where the knee was tapped, and a septic joint was ruled out. From there, she was referred to orthopaedics, and after a few weeks of splinting and physical therapy did not help with the swelling, she underwent an MRI to look for possible internal derangement. Due to her age, she needed sedation for the MRI. She had a classical appearance of synovitis suggesting juvenile arthritis and the musculoskeletal radiologist called me to get her in, and we were able to see her in the next few days. On my exam she had synovitis not only of her knee, but she also had mild swelling and limited range of motion of her wrist, as well as one painless swollen toe, suggesting a clinical diagnosis of juvenile idiopathic arthritis. Despite a relatively long path to get the right diagnosis — a month and a half from her PCP to me — she responded well to treatment, though she could have likely avoided the joint aspiration and MRI had she been seen by a rheumatologist sooner.
This case reminded me of other cases that had taken a circuitous path to arrive at our office, including two children with juvenile dermatomyositis that had undergone liver biopsies to work up elevated transaminases. When the first child’s biopsy came back normal, further searching prompted a rheumatology referral and he was diagnosed with juvenile dermatomyositis. The second child’s liver biopsy was also normal, and she was given an MRI for an abnormal gait — which was also normal. But she had a rash on her elbows and hands that prompted a referral to a pediatric dermatologist, who promptly recognized juvenile dermatomyositis and got her into rheumatology. I suspect that most physicians have similar experiences of patients that have taken the scenic route to arrive at the right clinic.
In my mind, these examples illuminate several issues. First is the delay in diagnosis and initiation of appropriate therapy. A prolonged delay could result in potential harm over the long term. Secondly, often patients are subject to unnecessary procedures or interventions — biopsies, MRIs, physical therapy — which in and of themselves can lead to anxiety and expense, as well as the potential for false positive findings that detract from the true diagnosis. Finally, the fact that the first specialist a patient waited so long to see is not the correct one and to be told they must be referred to a different specialist (with another potential long wait) can be incredibly frustrating for the patients and their loved ones.
This experience has made me appreciate the value of good judgment and triage, which I observed while in training. When I went to medical school in a town in India in the '80s, we did not have an EMR. We used paper records, and typically the patients carried a folder with all the relevant tests and notes from earlier visits. This seemed to work well most of the time for the follow-up visits. But the new patient process was different, since they had no records. New patients first went to a small room near the front gate. They were greeted by a “ward-boy” who was an attendant, not a physician or a nurse. The attendant asked the patients a few questions about their symptoms and then referred them to go to a specific outpatient department based on their symptoms. Sending a man with ear pain to ENT or one with a watering eye to the ophthalmology clinic was straight forward. But when a young woman walked in with abdominal pain, correctly sending her to medicine, surgery, or ob/gyn was more challenging. On reflection, I was amazed at how right they got this job, sending the patients to the right department almost all the time. I don’t recall many instances where a patient would be redirected to some other department. The keen judgment and experience of doing this day in and day out enabled these individuals to triage patients efficiently.
Coming back to the original case of the girl with swollen knee, there are likely opportunities for process improvement. With more time and exposure in training to subspecialties, we could reduce the number of inappropriate referrals. With more communication between PCPs and the subspecialist about the diagnosis, PCPs may feel prompted to refer earlier in the future with a similar case. But, while improved communication between the PCP and subspecialist prior to referral would certainly help mitigate inappropriate referrals, with ever so busy schedules, finding time to talk on the phone is challenging. This is perhaps where EHRs could be made to work for all. Facilitating easier communication electronically, even across different EHRs, might also help. An electronic message or phone call between clinicians might direct the patient to the right place sooner. Specialists should also have processes where clinical information on referred patients is screened for one of two options: bring a patient in to be seen sooner than scheduled, or redirect to a more appropriate provider. Both will avoid the scenario of a patient having a long wait only to be told they are at the wrong office. For some challenging patients with complicated histories, referral to a multidisciplinary clinic specializing in evaluating undiagnosed illnesses might avoid being shuttled around. When the right patient is referred to the right specialist at the right time, everyone benefits: our schedules are left open for patients we can best help, and patients can save the most precious commodity for healing: time.
Share a story about a time you made or received a misdirected referral.
Dr. Sampath Prahalad is a Professor of Pediatrics at Emory University and is the Chief of Pediatric Rheumatology at Children’s Healthcare of Atlanta. He is a physician, scientist, scholar, and mentor with a focus on juvenile arthritis, familial autoimmunity, and translational research. A devoted father and a husband, when he is not in the hospital, he loves to hike, travel, or try a new recipe on his instant pot. Dr. Prahalad is a 2021–2022 Doximity Op-Med Fellow.
All names and identifying information have been modified to protect patient privacy.
Illustration by Jennifer Bogartz