Yale New Haven Hospital’s reorganization of its sickle cell disease program led patients to report feeling better off and needing fewer hospitalizations. However, the change left some with the disease still feeling unsatisfied.
A multi-faceted reorganization of sickle cell disease (SCD) treatment at Yale New Haven Hospital led to dramatic drops in inpatient care, emergency department visits, and costs, and led to nearly two-thirds of patients reporting feeling better off as a result of the new treatment paradigm.
The reorganization is outlined in an article in PLoS One. The report suggests that one drawback of the program was that even when patients felt more cared for, they were frustrated by what some saw as a lack of shared decision-making.
Corresponding author John D. Roberts, MD, the medical director of Yale’s SCD program, and colleagues wrote that in 2010, despite the hospital’s long-term focus on SCD care and research, the hospital’s SCD program had the highest average length of stay for adults with SCD among Connecticut’s 6 highest-SCD-volume hospitals. Patient complaints were common, and patient advocacy groups had reached out to hospital leadership with concerns.
Against that backdrop, the hospital sought in 2011 decided to redesign its approach. The hospital appointed new leadership and expanded its use of advanced practice professionals (APPs). They also added psychiatry support to the program.
The SCD program was given its own centralized unit in the hospital (previously SCD services were located on different floors). New nursing leadership and staff were recruited to focus specifically on care of adults with SCD, and the inpatient care of these patients was transferred from general medicine attendings to hematologists working alongside APPs.
Aside from the logistical reorganization, the program’s other emphasis was on rethinking pain management. While the program’s leadership said many or most patients would be best able to manage their pain with opioids, they were also aware that a certain percentage of those patients would be susceptible to addiction or the use of opioids for reasons other than pain. That meant providers would need to be vigilant, Roberts and colleagues said, not only about monitoring patients for signs of dependency, but also for monitoring potential biases on the part of staff. The authors noted that most patients with SCD are African-American or Latino.
“Decisions by those in power and patients’ assessments of those decisions may be affected by racial bias and perceptions of racism,” Roberts and colleagues wrote.
One of the most important facets of the program’s pain management strategy was that care would be provided at home whenever possible. Unscheduled acute care visits were to be converted to scheduled visits with providers invested in the patient’s long-term care whenever possible.
When patients required hospitalization, the program called for their care to be directed by their outpatient providers as much as possible.
“When patients remain in the hospital for more than a few days, it is best if an outpatient clinician is consulted and largely permitted to direct inpatient management; the alternative is inconsistent care, which fosters conflict and a tendency to allow patients to lapse into dysfunctional behaviors,” Roberts and colleagues wrote.
The program achieved important milestones. Inpatient days among program participants dropped by 79%. Emergency department visits dropped by 63%, and hospitalizations fell by 53%. At the same time, inpatient visits increased by 31%. In the end, total costs were down by 49%.
Staff at the hospital reported positive reactions to the changes, and a majority of patients said they were better off as a result of the changes. However, Roberts said the patients’ responses were complicated.
“I was a bit surprised that even when patient’s reported that they were better off, they still thought that the process was unfair,” he told The American Journal of Managed Care®.
Roberts and colleagues wrote that the perception of unfairness was likely due to some patients’ desire for more of a shared decision-making model, which Roberts and colleagues said was unlikely to achieve the same results.
“Evidently, even in retrospect, many do not share my perspective that a doctor-directed approach was the only way to get from where we were to where we are now,” he said.
In sharing their story with other hospitals, Roberts and colleagues said a few key components were critical to their success. Those include at-home management when possible, and an outpatient facility specifically devoted to longitudinal care of patients with SCD. It is ideal if the program’s providers all share a similar approach to opioids and pain management, which they said likely requires a small team of outpatient providers. Those outpatient providers should file personalized care plans for patients, so that if the patient ends up in the emergency room, the hospitalists attending to the patient can provide concordant care. If the patient ends up being admitted, the outpatient physician should guide care.
Finally, due to the likelihood that such shifts will require major changes in organization and day-to-day practice, Roberts and colleagues said strong leadership is key to such a reorganization.
“Given the centrality of pain and pain management with opioids to the care of adults living with SCD and the intrinsically subjective nature of that management, creation of an integrated outpatient and inpatient program requires leadership with the authority or persuasiveness to implement change,” they said.
Rousseau R, Weisberg DF, Gorero J, et al. Utilization, financial outcomes and stakeholder perspectives of a re-organized adult sickle cell program. PLoS One. 2020;15(7):e0236360. doi:10.1371/journal.pone.0236360