Editorials for Clinical Practice
CHADIS Co-Director and President, Dr. Barbara Howard is a regular contributor to the Behavioral Consult column of Pediatric News and an Assistant Professor of Pediatrics at The Johns Hopkins University School of Medicine.
Dr. Howard is a developmental-behavioral pediatrician trained by Dr. T. Berry Brazelton at Harvard University. She is a national speaker on child behavior problems and is a past president of the Society for Developmental and Behavioral Pediatrics. She was a contributing author for Bright Futures™, Diagnostic and Statistical Manual for Primary Care (DSM-PC) and Bright Futures in Practice: Mental Health and has served on national committees of the American Academy of Pediatrics.
Making an effective referral is surprisingly complex
One of the critical tasks in primary care, but for which you may have had no training, is making a referral. Referrals actually are a complex procedure that can result in crucial health, developmental, and mental health benefits, yet patients attend referred services at wildly variable rates of 11%-81%, and for mental health and early intervention (EI) less than half the time.1 When surveyed, primary care providers (PCP) say that they want to share in the care of 75% of patients they refer, especially for mental health concerns. Yet after decades of practice, I can count on one hand the number of children I have referred to mental health or EI services for whom I received feedback from the specialist (here meaning agencies or providers outside the office). Lately, if the specialist is using the same EHR, I sometimes discover their note when reviewing the document list, but I was not cc’d. In fact, the most common outcome is that the patient never sees the specialist and we don’t find out until the next visit, often months later when the precious time for intervention has passed. Less than 50% of children with a mental health issue that qualifies as a disorder are detected by PCPs, and less than half of those children complete a referral. But there are lots of reasons for that, you say, such as a lack of specialists. But less than half of referrals for toddlers with developmental delays are completed to EI services even when such services are available and free of cost.
What makes referrals so complicated? Lack of referral completion can come from structural factors and interpersonal factors. We and our patients both are frustrated by lack of specialty resources, specialists who do not accept our patient’s insurance (or any insurance), distance, transportation, hours of operation issues, overall life burdens or priorities of families, and of course, cost. We can help with a few of these, either with our own list or ideally with the help of a care coordinator or social worker keeping a list identifying local specialists, payment methods accepted, and perhaps reduced-cost care options or financial assistance. However, the interpersonal issues that can make or break a referral definitely are within our reach.
Some of the reasons patients report for not following through on a referral include not feeling that their PCP evaluated the situation adequately through history or that the PCP failed to perform tests, such as screens. Because 27% of referrals are made based on the first phone contact about an issue (a dump?), and most are made at the first visit an issue is considered (two-thirds for mental health referrals), this feeling is unsurprising and likely true. Families often do not know what kind of expertise we have to size up a need, especially if discussion about development or mental health have not been a regular part of care before a problem is detected. Parents of children with developmental delays who declined referral felt they were more expert on their child’s development than the PCP. Another reason given for not attending a referral is that the condition being referred for and what to expect from the referral, including logistics, was not clear to the parents of the patient. Low-literacy parents (30% of low-income samples) did not find written materials helpful. Parents referred to EI services, for example, sometimes thought they were being sent to Child Protective Services or feared notification of immigration. PCPs who have more time for visits and/or had a care navigator available to explain the process have more successful referrals (80%), especially if the manager makes the phone contact, which takes a parent on average seven calls to EI. In some cases, the parent does not agree that a consultation is needed. If this had been part of the referral discussion, a shared understanding might have been attained or an intermediate step chosen.
In many practices, language, literacy, and cultural differences are major barriers. Other barriers come from the parent or another family member denying there is an issue, not believing that the intervention being suggested is effective, concern over stigma for diagnoses such as mental illness or autism, not prioritizing therapies we recommend over other potential solutions such as home efforts or herbal medicine, or simple fear. The key here is for us to both give information and nonjudgmentally listen to the parent’s (or child’s) point of view and barriers, showing empathy by echoing their feelings, then using a motivational interviewing approach to weighing pros and cons of taking steps towards a referral. Requesting a “Talk Back” from the parent of what you tried to convey can assure understanding. The “warm hand-off” to a smiling colocated professional that is so helpful at overcoming fear has recently been simulated by onsite tele-intake visits, resulting in 80% of patients keeping a visit for mental health care.
For collaborative and cost-efficient care, we need to provide the specialist with data we have gathered, what questions we want answered, how best to communicate back, and what role we want in subsequent care. Referral completion is three times higher when PCPs schedule the appointment and communicate with the specialist. We need back a timely note or call about their impression, any tests or treatments initiated, and their ideas about sharing care going forward. A structured referral template makes for more satisfactory communication, but the key is actually sending and receiving it! Most PCPs surveyed count on the family to convey information back from a specialist. This respects their ownership of the issue, but what they tell us may be inaccurate, incomplete, and/or miss concerns the specialist may not have wanted to tell the patient, such as rare but serious possibilities being considered or delicate social issues uncovered.
Great discrepancies have been found between the frequency PCPs report providing information to specialists (69%) and what specialists report about frequency of receipt (38%). PCPs report hearing back about 21% of mental health referrals.4 Both may be true if referral information is lost in the system somewhere. Simply faxing the referral form to EI programs (that routinely contact families) rather than just giving families a phone number (33%) increased referral success to 58%! Text reminders also hold promise. Finally, with such low completion rates, tracking referrals made and information back is crucial, yet only 6 of 17 practices in one study did so.5 Apart from intra-EHR referral, newer software-as-a-service systems can transmit consent forms that include permission and information for the specialist to contact the patient and report on kept appointments (such as CHADIS) as well as exchanging results (such as Salesforce) that hold promise for closing the loop.
New interest by health care systems in better referrals is not just caused by care considerations, but for financial reasons. Specialty care costs more than primary care management, and missed specialist appointments are not only missed opportunities but also costly! And one-half of all outpatient visits are for referrals! This may become the best motivator for your practice or system to undertake a quality improvement project to improve this crucial primary care procedure.
Dr. Howard is an assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (). She reported no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. Email her at