Caring for the Adult With Sickle Cell Disease: Results of a Multidisciplinary Pilot Program

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1 o r i g i n a l c o m m u n i c a t i o n Caring for the Adult With Sickle Cell Disease: Results of a Multidisciplinary Pilot Program Nicole Artz, MD; Chad Whelan, MD; Sharon Feehan, DNP, FNP-BC Background: Care for adults with sickle cell disease (SCD) is often fragmented and costly. The chronic care model is recommended as a best practice approach to providing care for patients with chronic disease. However, no published reports exist examining the effectiveness of this approach in adults with SCD. Purpose: To examine selected quality and utilization measures at baseline and following implementation of a new multidisciplinary program for adults with SCD at one academic institution. Methods: Administrative data were obtained for all adults with SCD admitted to the adult emergency department or hospital or seen in the adult outpatient clinic during calendar years Charts of all patients seen in the adult multidisciplinary sickle cell clinic were abstracted using prespecified criteria. Results: Prescribing of hydroxyurea increased from 13% at baseline to 44%. An additional 53% of patients had a documented reason for no prescription. Decreases in admissions, 30-day readmissions, and lengths of stay resulted in an average savings of 458 bed days per year. Conclusion: Multidisciplinary care for the adult with SCD provided in the context of the chronic care model can result in significant improvements in important quality targets and may reduce acute resource use. Keywords: sickle cell disease n utilization J Natl Med Assoc. 2010;102: Author Affiliations: Department of Medicine, Loyola University Health System (Drs Artz and Whelan); and Department of Medicine, University of Chicago Medical Center (Ms Feehan), Chicago, Illinois. Correspondence: Nicole Artz, MD, Department of Medicine, Loyola University Health System, 2160 S First Ave, Bldg 54, 007, Maywood, IL (nicoleartz@sbcglobal.net). Introduction Sickle cell disease (SCD) is an inherited, chronic disorder affecting multiple different organ systems and resulting in significant morbidity and early mortality. Due to advances in early diagnosis and treatment, more than 90% of children with the disease now live into adulthood, placing a growing strain on the health care delivery system. 1 Data from Agency for Healthcare Research and Quality show that the estimated cost for SCD hospitalizations in 2004 was $488 million and adults comprised nearly 75% of hospital admissions. 2 Unfortunately, care for adults with SCD remains fragmented and fraught with mistrust between patients and health care providers. 3-7 In addition, that no centralized database for reporting quality measures exists and what little published data are available suggests the majority of patients are not receiving recommended care A multidisciplinary approach to care using the chronic care model has been shown to be effective in reducing utilization in patients with asthma, congestive heart failure, and diabetes; to improve quality outcomes in patients with diabetes; 11 and is recommended as a best practice approach to caring for patients with SCD by organizations in both Britain and the United States. 9,12 The chronic care model, as described by Wagner, has 6 components including: (1) community resources and policies, (2) health care organization, (3) self-management support, )4) delivery system design, (5) decision support, and (6) clinical information systems This approach seems ideally suited to addressing the multiple challenges in providing care for this population. However, to our knowledge, no published reports exist examining the effectiveness of this approach in adults with SCD. The focus of much of the prior work on SCD in adults is on resource utilization and clinical outcomes. We set out to examine selected quality of care measures and acute health care utilization at baseline and following implementation of a new multidisciplinary care team incorporating components of the chronic care model for adults with SCD. Methods This is a prospective observational study designed to assess pre- and postintervention quality and administrative outcomes of a new multidisciplinary adult sickle cell treatment program initiated in October 2006 at an academic tertiary care medical center on the south side of Chicago. This study was approved by the institutional review board. JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION VOL. 102, NO. 11, NOVEMBER

2 Description of the Program The adult sickle cell care team is comprised of a physician director, a nurse practitioner, and a licensed clinical social worker. The program uses a multidisciplinary care approach to ensure continuity across the spectrum of health care delivery. The components of the chronic care model which were incorporated in the program are denoted in parentheses. Setting The program was initiated at an academic tertiary care medical center located on the south side of Chicago. An average of 280 to 300 unique adults with SCD have 1 or more encounters per year at the institution. The payer mix is approximately 60% Medicaid and 30% Medicare, with the remaining a mix of private and uninsured. The program was developed by an internist physician champion with broad support from many divisions, including hematology, emergency medicine, anesthesia pain, nursing, and social work. It was funded through the Department of Medicine with the goals of improving care delivery, reducing need for acute resource use, and Figure 1. Hospital Admissions at the Institution by Year for All Adults With Sickle Cell Disease advancing opportunities for meaningful research (chronic care model component: health care organization). Adult Sickle Cell Care Team Physician director. The physician director is a practicing internist with training and board certification in internal medicine and pediatrics. Twenty-five percent of the physician s time is dedicated to direct patient care and to oversight of the program. The physician sees patients in the outpatient clinic one-half day per week and is responsible for training and clinical supervision of the advanced practice nurse (chronic care model component: delivery system design). Administrative responsibilities include program budget management, coordination with researchers to initiate basic science and clinical research, and tracking administrative and quality data. Nurse practitioner. The nurse practitioner provides consultation for hospitalized patients assisting with treatment of pain, early recognition and management of lifeor organ-threatening complications, decisions regarding need for blood transfusion, and discharge planning (chronic care model component: delivery system design). She serves as an advocate for the patient and works with the health care team to educate and reduce mistrust. In addition, she sees patients 2 half-days per week in Figure 2. Hospital Admissions at the Institution per Patient by Year for All Adults With Sickle Cell Disease Figure 3. Hospital Admissions by Month Figure 4. Ongoing Reduction in 30-Day Readmissions at the Institution by Year for All Adults With Sickle Cell Disease There was large variability in admissions prior to initiation of the adult sickle cell program. There seems to be a lower baseline with less variability after initiation of the multidisciplinary program JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION VOL. 102, NO. 11, NOVEMBER 2010

3 an outpatient clinic. The remainder of her time is spent providing case-management services (chronic care model component: delivery system design). Patients are encouraged to call the nurse practitioner s voice mail to leave their prescription refill requests prior to running out, thus avoiding the cycle of running out of adequate analgesics for use at home, which may precipitate withdrawal, escalation of pain, and an otherwise unnecessary trip to the emergency department (chronic care model component: self-management support). Social worker. The licensed clinical social worker addresses the psychosocial needs of patients. In addition to assisting with concrete needs (transportation, housing, utilities), her role includes helping patients identify triggers for their vasocclusive crises, teaching patients about nonmedicinal pain management techniques that they can implement themselves, and providing cognitive behavioral therapy when needed to reframe negative thought patterns (chronic care model components: selfmanagement support and delivery system design). She actively connects patients with community resources, including local sickle cell organizations, vocational training programs, mental health services, and coordinates support group meetings (chronic care model component: community resources and policies). Additional services. All patients have access to a provider via a 24-hour emergency pager. Patients are taught to page the providers for assistance with treating their crisis pain at home and advice regarding when to go to the emergency department (chronic care model component: self-management support). The care team worked with the emergency department and inpatient nursing leadership to develop an evidence-based crisis treatment protocol, inpatient standardized order set, and to obtain new patient controlled analgesia pumps for the wards capable of delivering adequate analgesia for patients with high opioid tolerance (chronic care model component: decision support). All members of the care team provide ongoing formal and informal education to patients, physicians, nurses, and ancillary staff and actively work to reduce misperceptions about drugseeking behavior and risk of addiction (chronic care model component: self-management support). In the rare event that a patient s behavior is interfering with the ability to provide them with safe and effective care, a care plan is developed which offers structured behavioral guidance with consequences for deviations from the plan so a positive and safe provider-patient relationship can be maintained. Care plans were necessary for approximately 10 out of 157 patients. Figure 6. Total Bed Days per Year Figure 5. Inpatient Average Lengths of Stay (Days) by Year for All Adults With Sickle Cell Disease This figure shows a decrease in inpatient bed days for all adults with sickle cell disease. The new multidisciplinary program was initiated in October Figure 7. Total Bed Days per Patient Figure 8. Total Bed Days by Month This figure shows that total number of bed days per patient were decreased in the years since initiation of the multidisciplinary program and are at the lowest they have been in the past 10 years in There was large variability in inpatient bed days prior to initiation of the adult sickle cell program. JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION VOL. 102, NO. 11, NOVEMBER

4 Quality of Care Measures All patients with a confirmed diagnosis of SCD who were seen at least once in the multidisciplinary adult sickle cell clinic were included for purposes of quality of care measurement. Because we did not have a clinical information system which we could use to abstract process measures, quality measures were obtained by individual chart review using specific criteria as explained below. Unless otherwise specified, we chose to include all patients with at least 1 visit to our outpatient clinic as the denominator. Patients who were actively followed were defined as those with at least 1 visit within the past 12 months. Hydroxyurea. Hydroxyurea is currently the only FDA-approved medication available for treatment of SCD. It has been shown to significantly reduce the incidence of painful crises, acute chest syndrome, and mortality. 17,18 It is widely believed that this medication is underused in this population, but actual data on use are lacking. 8,19 We set out to determine the percentage of patients who reported actively being prescribed hydroxyurea at the time of their first clinic visit with us, our internal rate of prescribing, and our rate of documenting an appropriate reason in patients who met severity criteria but were not prescribed the medication. Appropriate Figure 9. Total Cost of Care of Inpatient Hospitalizations by Year reasons for not prescribing hydroxyurea included pregnancy or plans to get pregnant, hemoglobin SC disease, patient refusal, and documented severe adverse reactions to the medication. Patients with mild disease and those who came to clinic only once but did not return were also included in the reason documented group since we rarely initiate hydroxyurea on the initial visit. Proteinuria. Nephropathy is a common complication of SCD occurring in up to one-third of adolescents and adults. 20,21 As with diabetic nephropathy, proteinuria is an early sign of glomerular damage and responds to treatment with an angiotensin-converting enzyme (ACE) inhibitor. 20,22 We defined proteinuria as a random urine protein/creatinine ratio greater than 0.1 mg/dl on 2 or more measurements. We used a cut off of more than 0.2 mg/dl on 2 or more measurements to begin treatment with an ACE inhibitor or angiotensin receptor blocker. Vaccinations. Pneumovax and influenza vaccinations are recommended for all adults with SCD. We measured our rate of either vaccinating patients with pneumovax and for seasonal influenza or documenting Figure 10. Total Hematology Outpatient Visits by Year to the Adult Hematology Clinic or Infusion Center for All Adults With Sickle Cell Disease Cost of inpatient care for adults with sickle cell disease was rising prior to initiation of the dedicated multidisciplinary adult program in October Since initiation of the program, cost of inpatient care has been down approximately $ per year. Figure 12. Hydroxyurea Use Pre and Post Dedicated Adult Sickle Cell Program (n = 157) Figure 11. Total Unique Adults With Sickle Cell Disease by Year Number of unique adults with sickle cell disease with 1 or more encounters at the institution by year. The numbers have been relatively stable since Only 13% of patients reported being on hydroxyurea at their initial visit to the adult clinic. Forty-four percent of all patients with 1 or more visits were prescribed hydroxyurea at the time of their most recent clinic visit JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION VOL. 102, NO. 11, NOVEMBER 2010

5 an appropriate reason for lack of vaccination. We considered the pneumovax to be up to date if it was given with the prior 5 years. Screening echocardiograms. Pulmonary hypertension is an increasingly recognized problem affecting 30% to 40% of adults with SCD, with a median survival of 25.6 months from time of diagnosis. 23,24 We chose to investigate our rate of obtaining echocardiograms in steady state within 2 years of the most recent visit. Iron overload. Many patients with SCD develop iron overload due to multiple blood transfusions throughout their life. We investigated our rate of screening for iron overload. We defined iron overload as a steady-state serum ferritin greater than Administrative Data All International Classification of Diseases, Ninth Revision (ICD-9) codes for sickle cell disease (282.60, , , , , , , , ) were used to pull encounters for the administrative data analysis. Patients admitted to the adult emergency department or hospital or seen in the adult outpatient clinics were included. Data were included for calendar years in order to establish a baseline prior to initiation of the new program in October Statistical Testing Descriptive statistics were used for resource utilization, adherence to quality measures, and patient volume. Changes in resource utilization were assessed using 2-tailed unpaired t test and differences in adherence to quality measures were assessed using c 2 testing. Results One hundred fifty-seven patients had at least 1 visit to the clinic. Of those patients, 66% were female, 64% Figure 14. Influenza Vaccination Rates by Year Figure 13. Postprogram Totals of Current Hydroxyurea Missed Opportunities (n = 157) This figure represents our rate of missed opportunities those patients for whom we either prescribed hydroxyurea or who documented a reason for not prescribing. This figure represents where we are meeting our quality targets of either vaccinating for influenza during flu season or documenting a reason for no vaccination. Figure 15. Iron Overload (n = 157) Figure 16. Missed Opportunity (n = 53) This figure shows our rate of screening using the steady-state serum ferritin. Thirty-right percent of screened patients met criteria for iron overload, but only 8% of those reported being on chelation therapy at their initial visit. This figure represents the percentage of patients who met criteria for iron overload whom we failed to treat or document a reason for no treatment. JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION VOL. 102, NO. 11, NOVEMBER

6 had hemoglobin SS, 15% had sickle ß-thalassemia, and 20% had hemoglobin SC disease. The average age was 31 years with a median of 27.5 years. Administrative Outcomes Figures 1 to 10 show changes in resource utilization. There is a downward trend in admissions, 30-day readmissions, and lengths of stay, resulting in an average savings of 458 bed days per year (average bed days for years compared with average bed days for years , p value =.06 [ to ]) and concurrent reductions in cost of care. In the most recent calendar year, 2009, we see the lowest number of admissions, 30-day readmissions, and total bed days of the past nine years. Figures 3 and 8 show large variability in admissions and total bed days in the years prior to the program. There appears to be less variability since initiation of the program. The overall number of unique patients treated at the institution was similar in the year immediately before and after initiation of the program (Figure 11). Quality Outcomes Hydroxyurea. Only 20 (13%) of patients reported being on hydroxyurea at their initial visit to the clinic. Of those, only 3 (15%) reported being on a dose consistent with their goal dose. As of the last clinic visit, 44% of patients with 1 or more visits to the clinic were prescribed hydroxyurea (Figure 12, p <.001). Of those, 41% had been titrated to their maximally tolerated dose and the remainder were being actively titrated. An additional 53% of patients did not meet criteria for hydroxyurea or had a clearly documented reason for no prescription. Thus, in this measure we met our quality target (prescribing in patients who met criteria or documenting a reason for not prescribing) 97% of the time (Figure 13). Proteinuria. One hundred thirteen patients (72%) had been screened for proteinuria as of the last clinic note. Fifty-three patients (47%) met criteria for proteinuria. Of the patients with proteinuria, we met our quality targets in either treating with an ACE inhibitor or angiotensin receptor blocker or documenting a reason for no treatment in 85% of patients. Vaccinations. We documented an up-to-date pneumovax in 92 patients (59%) and documented a reason for a lack of pneumovax in an additional 11 patients, leaving us with a missed opportunity of 44%. Our rate of influenza vaccination showed significant variability from season to season (Figure 14). Screening echocardiograms. Only 45% of patients had an echocardiogram completed within the past 2 years. Iron overload. One hundred thirty-eight patients with 1 or more visits (88%) had a steady-state screening serum ferritin. Of those, 53 (38%) qualified as having iron overload. Only 8% of patients who qualified as having iron overload reported being on chelation therapy at the time of their initial visit to the multidisciplinary clinic (Figure 15) vs 53% who were prescribed chelation as of their last clinic visit (p <.001). An additional 21 (40%) had a clearly documented reason for no chelation or had only 1 visit to the clinic. Thus, we met our quality target for screening in 88% of patients and for treating in 92% of patients, leaving us with a missed opportunity for treatment in 8% of patients with iron overload (Figure 16). Met all quality targets. We met all of our quality targets in only 16% of patients. Discussion We present these results with the intent of starting an open conversation about the state of care for adults with SCD. Our results show that baseline quality of care was poor and inpatient utilization at our institution was high and rising. We suspect that this is the case at other institutions nationwide, although we cannot say this with certainty, given the lack of available published information. Although we showed significant improvements in quality measures such as prescribing hydroxyurea in appropriate patients and screening and treatment for iron overload, we note that even with a dedicated team we were able to meet all quality targets in only 16% of patients. Although some of the gap undoubtedly lies with patients who made only 1 clinic visit or did not follow through with tests that were ordered, it is likely that a greater portion lies in a lack of a systematic way of tracking and automating these targets. The sixth component of the chronic care model, clinical information systems, was a challenge for us. Without an electronic medical record we did not have an automated reminder system prompting us to follow through on missing quality measures. A major barrier to obtaining echocardiograms was the lack of reimbursement by insurance companies for purposes of screening. This was a frustrating barrier to encounter, given the high prevalence of pulmonary hypertension in adults and the implications for prognosis. Our study has some important limitations to acknowledge. In regard to the quality measures, in the absence of clear national or international guidelines, we chose to focus on a few measures that we felt were most strongly supported by data (ie, hydroxyurea and vaccinations), as well as those that we felt had consensus among sickle cell providers. We acknowledge that there are other important measures that we did not track. We also acknowledge the important limitations of using serum ferritin as the main measure of iron overload. However, this is the screening test that was available at our institution (an academic tertiary care center) at the time the program was initiated, and we suspect it remains the test most frequently used by the majority of physicians caring for these patients. We hope that in the future more sophisticated, cost-effective, and noninvasive screening 1014 JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION VOL. 102, NO. 11, NOVEMBER 2010

7 methods for iron overload will be widely available. This study was not designed to measure compliance with treatment. Thus, we only measured and reported those pieces of the process measures that we could directly control. Nonetheless, we believe this is an important first step. It is hard for a patient to be compliant with hydroxyurea if it has never been discussed and prescribed. This study was not a randomized, controlled trial and thus any conclusions drawn about cause and effect are purely speculative. This is particularly important to remember when looking at our administrative data. Reorganization of the general medicine and hematology inpatient services happened concurrently and resulted in all adult sickle cell patients being admitted to general medicine; previously, patients could be admitted to the general medicine or hematology service. In many ways, this restructuring of the services worked in our favor, allowing us to focus our inpatient quality improvement and nursing education efforts on 1 unit and have more of a physical presence during the day. However, a concurrent reduction in the number of general medicine beds available contributed to overcrowding in the emergency department and may have impacted emergency department utilization and admission rates. One may wonder if the decrease in admissions simply reflects a decrease in number of patients with SCD at our institution. However, the total number of unique adults with SCD cared for at our institution has been relatively stable between 2003 and Thus, we cannot explain the drop in admissions by a drop in total number of patients. Likewise, we did not see a massive influx of new patients to the institution resulting in a greater number of individual patients. Not all patients with SCD seen 1 or more times at the institution chose to follow with our care team in the clinic. We deliberately included all patients with SCD (even those that did not follow with us in our clinic) for purposes of administrative data analysis for several reasons. First, our goal was to improve care for all patients with SCD and thus we were heavily involved in broad quality improvement initiatives within the emergency department and hospital wards such as obtaining highconcentration opioid patient controlled analgesia pumps, developing standardized protocols, and participating in nursing and house staff education. In addition, we consulted on any patient with SCD in the hospital, not just those who followed with us in the clinic and likely impacted acute resource use in these patients as well. Finally, this study was not designed to look at overall cost effectiveness. However, we suspect that the costs of maintaining a program such as this are far offset by improvements in quality of care delivered and reduced need for acute resource use. Our results show that significant improvements in important quality targets can be accomplished in a relatively short period of time and suggest that multidisciplinary care in the context of the chronic care model may also reduce the need for acute resource use. We assert that programs that specialize in caring for patients with SCD, whether small or large, should develop ways (ideally, electronic) of tracking and reporting their quality and administrative outcomes. We hope that a centralized repository in which to track quality and administrative outcomes will become available in the future. This would allow programs to benchmark their outcomes against those of similar programs and share information in ongoing efforts to improve care delivery for this vulnerable population. References 1. 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