Although many patients with SCD seek care emergently for vaso-occlusive episodes, admission rates have declined steadily over the past decade, most likely due to the more widespread use of hydroxyurea. But how do we further decrease the hospital admission rate? I think that this goes back to the importance of preventive care. The best model is one in which patients are seen not only when they are sick but also when they are well. We generally recommend that patients with SCD be seen for a routine visit every 3 to 4 months; this is necessary for identifying new problems and barriers in obtaining or taking their medications, and for ongoing education on how to best care for themselves or their child.

Better preventive care would go a long way to further reduce hospital admission rates. A preventive care model requires every patient with SCD to have a hematologist. Not every patient in the United States is going to live near a center that cares for large numbers of individuals with SCD. Nonetheless, these patients should have at least 1 annual visit with a hematologist, who can then communicate directly with their primary care physicians to maximize disease-modifying treatments such as hydroxyurea, voxelotor, or crizanlizumab, all in an attempt to help keep patients out of the hospital. So, preventive care may be the best method for decreasing hospitalization rates.

Several questions need to be asked when individuals with SCD visit the hospital multiple times in a short interval for pain. Why has the patient made such frequent hospital visits? Have we failed the family in any areas? Have we provided optimal medical care? Do we have informed, actively engaged patients? Do patients have a stepwise approach to managing their pain at home, and are they informed about how to take their pain medication at home? More specifically, do they have tools to manage their pain without immediately turning to pain medication? The increase in acute vaso-occlusive pain episodes over several months is the time to determine whether patients understand and mitigate their pain triggers. We also take inventory to ensure that, if patients have comorbidities that may contribute to acute vaso-occlusive pain (eg, asthma, depression, onset of menstrual cycle, and posttraumatic stress disease), these comorbidities are being evaluated and optimally managed.

As mentioned by Dr Chou, the second part is to improve access to comprehensive medical care measures. Many of our families are adults who work minimum-wage jobs. Most SCD clinics are not open in the evenings or on weekends, when many of our families can attend SCD clinics.

Recently, telemedicine has provided a wonderful opportunity to treat individuals with SCD who may live a significant distance away from a clinic. During a 30-minute telemedicine visit, a clinician who is knowledgeable about SCD can review laboratory results and provide patients with most of the same information that they would have received during an in-person visit, all without the tremendous cost of a 6-hour round-trip drive to a clinic during work hours, for instance. 

In the end, I believe that hospitalizations for acute vaso-occlusive pain episodes should be recognized as opportunities to improve the clinical outcomes and shared decision making in clinical care.

I agree with my colleagues on the importance of prevention. If we can help patients with SCD maintain wellness, and if we can engage them during their routine visits while they are well, then it becomes a shared goal to avoid visits to a clinic or hospital due to having become sick.

Additionally, well-informed patients can better advocate for their own care. One part of this involves discussions about disease-modifying therapies such as hydroxyurea, crizanlizumab, and voxelotor, as well as transfusions. Another component is more holistic and involves self-advocacy. This might include basic things such as the importance of taking medications as directed and encouraging patients to take proactive steps when seeking care at another hospital where providers may not be as familiar with them or with SCD. For example, we encourage patients who need to receive a transfusion at an outside hospital to speak up and engage with providers to explain their specific needs and to ask the local physicians to call us. This communication will help ensure continuity of care (eg, coordinating with a specialist regarding specific needs related to antigen matching to avoid alloimmunization or transfusion reactions).

During wellness visits, patient education can include lifestyle behaviors geared to help those with SCD, such as staying hydrated and warm and engaging in safe exercise. Additionally, seeing patients while they are well provides you with opportunities that may not be present during periods of sickness. For instance, if a well patient is contemplating going back to work, I might offer a word of encouragement, sharing my belief that working is good for the soul.

Every patient needs an SCD specialist! This is really important in helping people living with SCD. To that end, the National Alliance of Sickle Cell Centers is currently developing an interactive map system that will help patients contact the SCD center that is closest to them. We will be raising a generation of individuals with SCD who expect to live longer, so this will provide clinicians with an opportunity to really improve how they manage SCD as we strive to achieve a true chronic care model for this disease. This is really an exciting time.