June 26, 2023

HOMERuN Collaborative: Inpatient Models of Care Delivery for Adults with Sickle Cell Disease: People, Processes, and Systems

The Hospital Medicine Reengineering Network (HOMERuN) is a rapidly growing collaborative made up of more than 50 Hospital Medicine groups from academic and non-academic hospitals across the United States.

Moderators: Ashley Jenkins, Areeba Kara, Matt McIntosh, Francis Coyne, Jennifer Readlynn, Alejandro Vera   Background: People living with sickle cell disease (SCD) experience painful and life threatening vaso-occlusive episodes that cause frequent hospitalizations and account for >80% of the >$1 million lifetime healthcare costs. Despite people living with SCD requiring hospitalization frequently — on average once per year — there are no inpatient guidelines because of the dearth of evidence addressing inpatient SCD care. We also do not know how hospitalized patients with sickle cell disease are cared for in the US. Both of these gaps in knowledge create barriers in identifying interventions to improve care and understanding how to implement them in different hospital settings. We sought to understand how patients with SCD are currently being cared for in hospitals and what efforts may already be underway to improve their hospital care. The HOMERuN focus groups will augment other stakeholder interviews and focus groups to inform development of a national survey to characterize inpatient sickle cell disease care delivery models and access (or lack thereof) to quality clinical care and sickle cell disease expertise.

Care for Patients with Sickle Cell Disease

Depending on the institution, inpatient sickle cell disease (SCD) care occurs on both teaching and non-teaching services.  The number of individuals with SCD varies greatly upon location; providers in certain areas are more informed about the condition, ways to manage acute complications of the disease, and comfort in pain management. Hematology engagement at institutions varies. Most patients with SCD were treated by hospitalists or general medicine teams. At least two institutions that had a hematology service that would admit patients with SCD as a primary service.  Providers' hesitancy around pain management impacts the quality of care provided to patients with SCD; this patient population has a higher pain threshold requiring providers to be comfortable working with higher doses of opioids.

"Our goal is maximizing their pain regimen when they first come in the door, making sure there's not variation between providers where patients are nervous. We're hoping to deal with a lot of different factors, including trust, pain, catastrophizing, and having the patient buy-in before they come in for acute pain."

Hospital Stays for Patients with SCD

At some places, individuals with SCD experiencing a crisis have access to an infusion center, clinic, or other outpatient resource where they can receive fluids and pain medications. These resources were perceived as helpful to avoid admissions. If these resources are not available, the patients may go to the Emergency Department, where they will likely be admitted.  Some hospitals cohort patients with SCD to a particular floor or area of the hospital with providers trained in SCD care. Individualized care plans have been introduced in the inpatient setting to inform providers on how to best care for the individuals with SCD in some places, but this seemed tied to having a sickle cell center or an engaged hematology service.  Follow-through of patients' care plans is not always guaranteed; patients are met with hesitancy from providers for different reasons. Hesitancy included fear/anxiety around opioids and higher dosages. Care plans were perceived to not work or help the patients if providers were not familiar with the condition or pain management required.  Provider turnover exacerbates issues in providing care to patients with SCD and many participants expressed a desire for continuity of care to be established.  Participants referred to patients with SCD as "high utilizers," "seekers," and "MVPs" (multi-visit patients).

"Waiting for the specialists or waiting for whomever to come in to help, that's just time that the patient remains in uncontrolled pain."

Teams/Providers Involved in Caring for Patients with SCD

Departments/Divisions/Groups involved in hospital stay: Adult Hospital Medicine, Pediatric Hospital Medicine, Hematology, Behavioral Health Consult Service, Sickle Cell Consult Service Depending on the location, patients with SCD are seen by hospitalists alone, hematologists, or by hospitalists with hematology consult.  Providers involved in hospital stay include hospitalists, nursing staff (nurses, nurse managers, nurse practitioners), patient care attendants. Tele-consults with primary care providers have been able to provide more tailored care to patients with SCD. Access and availability of social workers with specific training in SCD and needed resources and comprehensive care were highlighted as an integral member not always available to the care team.

"We have a policy that hematology has officially said they want to be consulted on every patient, but anecdotally, when I actually have consulted them, the person on the other end of the pager sometimes agrees with that and sometimes does not. Then they're variably helpful."

System Designs for Care of Patients with SCD

Systems that support quality care for patients with SCD. Patient-centered medical homes to provide comprehensive care. Outpatient resources (e.g., infusion centers) that provide acute care, pain medications, and other infusions. Pain control education to help providers to not initially undertreat. Nursing staff trained in using distraction therapy with patients to help them cope with pain. Systems that do not support quality care for patients with SCD. Long pain-to-needle times, where better patient outcomes have stemmed from the first dose being administered faster. Issues with continuity of care (brought up frequently): presence of and access to outpatient and inpatient services, difficulty building rapport with providers, insufficient communication between departments and consults, providers not comfortable with pain management.  Hospitals running at or over capacity. Lack of racial concordance. Insufficient peer support to help patients socially and emotionally (although no one mentioned this was available to their patients with SCD, it was highlighted as a resource for other patient populations such as those undergoing a transplant).

"If we have the training and the level of comfort to provide care and that trusting and empathetic relationship to these patients, then they can have care within the community that they actually trust."

Recommendations for Building an Inpatient Service Line to Care for Patients with SCD

Readily available SCD expertise. System-wide education about SCD while concentrating care coordination to those who need it. Trust and rapport between providers and patients that is fostered by continuity of care. Med-Peds (and other service) engagement to help younger patients with transition from pediatric to adult care. Better understanding of how outpatient services impact impatient care and outcomes during/after hospitalization. Dedicated service with set providers to create an extra layer to who knows patients between admissions and inpatient care. Peer support to help patients socially and emotionally.

"A dedicated service with frequent APP and attending or learners and attending, and then I think I'd have an on staff social worker or clinical nurse specialist or some kind of extra layer to who knows these patients between admissions, maybe even has touch points in the outpatient setting to add that extra layer and that person might help own some of the care plans."

Key Takeaways: Individualized care plans for patients were felt to be a helpful tool to decrease variability in the care of patients with sickle cell disease. However, there was uncertainty regarding what components should be included and followed explicitly, as well as if or when they could be changed. Lack of access for individuals with sickle cell disease to outpatient services and comprehensive sickle cell disease care increases challenges to quality inpatient care. Continuity of care, even in the hospital, was felt to be a necessary aspect to ideal hospital care for individuals with sickle cell disease. Uncertainty regarding if, when, and how to access sickle cell disease expertise was a common challenge highlighted.  Exposure to the care of patients with sickle cell disease is highly variable leading to similar variability in provider self-perceived competence.

HOMERuN-Affiliated Study Seeking Partners

Roflumilast or Azithromycin to Prevent COPD Exacerbations (RELIANCE) Study

Purpose of RELIANCE: Both roflumilast and azithromycin have been shown to reduce the risk of COPD exacerbations compared to placebo. However, there has not been a head-to-head comparison of these two FDA-approved medications. RELIANCE is intended to support hospital efforts to reduce the risk of all-cause hospitalization and premature deaths in individuals with COPD.  RELIANCE is Seeking Community-Based Hospitalists: Hospitalists are critical in the development of post-discharge care plans and medications used by people with COPD. We found from preliminary work that identification of people with COPD while they are hospitalized is an efficient recruitment method for RELIANCE. Benefits and Compensation: $500/year honorarium for being a community partner (paid after registration) plus $2,000 per patient enrolled. Option to participate in clinical roundtables with COPD thought leaders. Contribute topic ideas for future grant proposals or publications related to hospitalist care. Community Partners will not be investigators / authors, but will be acknowledged in the RELIANCE publication.  Please reach out to Tiffany.Lee@ucsf.edu if you are interested in participating and would like more information about RELIANCE.

Our next meeting will be on July 14, 2023.

Image Attributions: Vector images from vecteezy.com

Check out the HOMERuN website for more information. If you would like to join the HOMERuN Collaborative calls, please reach out to Tiffany.Lee@ucsf.edu.