A Pilot Adult Sickle Cell Hematology Clinic in California's Inland Empire Improves Patient Outcome
Authors: Chiruvolu Neha , Patel Amie , Rowley Carolyn , Treadwell Marsha J. , Vichinsky Elliott P. , Pakbaz Zahra 
Published: November 2019

BACKGROUND: Life expectancy for individuals with sickle cell disease (SCD) is shorter in California than in other states with multiple contributing factors. These include a shortage of adult hematologists expert in SCD management, lack of resources for the provision of comprehensive care, and limited options for disease modifying therapies. Adults with SCD are vulnerable to negative social determinants of health including low income, challenges with attaining adequate education and employment, and racial disparities. Adults with SCD may not be well educated about health maintenance and treatment options. We piloted an adult sickle cell clinic under the direction of an adult hematologist with expertise in SCD management in California's Inland Empire. The program was instituted in January of 2017 at an academic medical center. Here we report on an interim analysis of the impact of the clinic on patients' decision-making regarding treatment options, including opioids and healthcare utilization (annual inpatient and emergency department (ED)visits).
METHODS: Data was collected from electronic medical records (EMR) for 65 consecutive adults with SCD who were seen by the adult sickle cell hematologist at least once either in the clinic or as an inpatient consult between January 2017- July 2019. For patients seen as outpatient, expectations were outlined as monthly clinic visits for 30 minutes each, including 10 - 15 minutes of education about SCD and available treatments. Individualized care plans aimed at decreasing the frequency of pain episodes were implemented and discussed at each visit. Care plans generally involved recommendations for disease modifying therapies not previously available to them. Cayenne Wellness Center, a community based organization partner, provided additional education and psychosocial economic assessment to offer resources including transportation to patients in need. Patients were grouped as adherent, non-adherent or inpatient consult and followed over time. They were assigned to the non-adherent group if they met 2 out of the 3 following criteria: clinic no-shows of &gt;50%, appointment interval &gt;3 months, and patients' choice to not comply with the agreed upon disease modifying therapy or to only stay on opioids. We reviewed annual admissions, ED visits, and opioid use from the EMR. For adults who joined the clinic in 2019 or relocated, only opioid use was included in this report.
RESULTS: Thirty-three percent (N= 22) of adults with SCD in the current sample chose not to follow up with the hematology clinic after their first inpatient consultation. For the remaining 43 patients, the median age was 34 years (range 19 to 59); 60% were female and 20% were diagnosed with Hgb SC. Forty nine percent (N=21) were classified as adherent. Twenty three percent (N=10) of patients had joined the clinic in 2019 or relocated. In the adherent group, 43% of patients had a 79% decrease in their annual admission rates and 37% had a 100% decrease in the average number of ED visits. At their first clinic visit, 72% (N=31) of patients were noted to be using opioids at home. Over time, 53% of the adherent group had a decrease in opioid use, while 36% of the non-adherent group had an increase in opioid use.
CONCLUSION: This pilot clinic showed that regular adult hematology sickle cell clinic follow up to individualize and optimize therapies and provide education can improve patient outcomes. Individuals who were adherent to disease modifying treatment regimens and had regular hematology outpatient follow up showed a decrease in ED visits, admissions, and opioid use.

Disclosures
Vichinsky: GBT: Consultancy, Research Funding; Agios: Consultancy, Research Funding; Pfizer: Consultancy, Research Funding; Novartis: Consultancy, Research Funding; bluebird bio: Consultancy, Research Funding. Pakbaz:Novartis: Honoraria, Speakers Bureau.