OBJECTIVES:

Frequent hospitalizations for sickle cell disease (SCD) vaso-occlusive crises (VOCs) are associated with school absenteeism, emotional distress, and financial hardships. Our goal was to decrease hospital days for VOC admissions by 40% over a 5-year period.

METHODS:

From October 2011 to September 2016, a multidisciplinary quality-improvement project was conducted with a plan-do-study-act methodology. Five key drivers were identified and 9 interventions implemented. Interventions included individualized home pain plans, emergency department and inpatient order sets, an inpatient daily schedule, psychoeducation, and a biofeedback program. High users (≥4 admissions per year) received an individualized SCD plan and assigned mental health provider. We expanded the high-use group to include at-risk patients (3 admissions per year). Data were analyzed for patients ages 0 to 21 years admitted for VOC. Hospital days were the primary measure; the 30-day readmission rate was the balancing measure.

RESULTS:

A total of 216 SCD pediatric patients were managed in 2011 with a 14% increase over 5 years. A total of 122 patients were admitted for VOC. Hospital days decreased by 61% from 59.6 days per month in the preintervention period to 23.2 days per month in the postintervention period (P < .0001). Length of stay decreased from 4.78 (SD = 4.08) to 3.84 days (SD = 2.10; P = .02). Among high users, hospital days decreased from 35.4 to 15.5 days per month. The thirty-day readmission rate decreased from 33.9% to 19.4%. Overall savings in direct hospital costs per year were $555 120.

CONCLUSIONS:

A dedicated team effort with simple interventions can have a significant impact on the well-being of a patient population and hospital costs.

What’s Known on This Subject:

Vaso-occlusive crisis is the most common complication of sickle cell disease, resulting in frequent hospitalizations. A multidisciplinary program indicated a decrease in readmissions; however, there are no data on the impact of a multidisciplinary program on hospital days for vaso-occlusive crisis.

What This Study Adds:

A multidisciplinary program with low-cost pharmacologic and nonpharmacologic interventions, directed not only at an entire sickle cell disease population but also individualized to specific patients, can have a significant impact on the well-being of a patient population and decrease hospital costs.

Patients with sickle cell disease (SCD) often experience vaso-occlusive crises (VOCs) that necessitate frequent hospitalizations.1 Regular admissions are associated with school absenteeism, academic problems, emotional distress, and diminished quality of life.2,4 They also have a significant financial impact on the health care system. A cost analysis from the United Kingdom found that the total cost of VOC admissions in a year was £18 798 255, of which 91% was for admissions.5 Similar analyses from the United States found the lifetime cost for SCD care was $460 151 per person, with >80% of these costs (80.5%) associated with inpatient admissions.6 

The literature on initiatives to decrease admissions, length of stay (LOS), and hospital days for VOC is limited. Researchers have examined standardizing care pathways or use of individualized care plans in the emergency department and have shown improved pain management, but most have not decreased admission rates.7,10 

Identifying and addressing risk factors for admissions is another potential strategy to decrease VOC admissions. Frei-Jones et al11 identified that lack of outpatient follow-up after hospital discharge and disease severity were predictors of 30-day readmissions. The authors reported a decrease in the readmission rate from 28% to 11% after implementation of a multidisciplinary program.12 Carroll et al13 found that a small subgroup of adult patients had ≥4 admissions per year, and this group had more office visits and SCD-related acute and chronic complications. Other studies have revealed an association between mental health disorders, particularly depression or anxiety, with the number of admissions and LOS for pain crises.14,16 

On the basis of this literature, we created a multidisciplinary program with interventions for the entire cohort as well as targeted interventions based on risk factors. At the onset of the project, the monthly average of hospital days for VOC was 59.6, with a LOS of 4.78 days. We aimed to decrease total hospital days for SCD VOC by 40% over a 5-year period.

From October 2011 to September 2016, we conducted a quality-improvement project at Yale New Haven Children’s Hospital, a 221-bed academic medical center. We analyzed data from patients with SCD, aged 0 to 21 years, who were admitted for VOC. Patients admitted for non-VOC problems or whose hospital stay was extended for later development of fever or acute chest syndrome were excluded.

We formed a multidisciplinary team with representatives from various disciplines: pediatric hematology, child psychology, child psychiatry, adolescent medicine, pain medicine, pediatric emergency medicine, nursing, social work, child life, and quality improvement. On this basis of extensive literature review and to identify best practices and expertise of team members, we initially identified 3 key drivers of hospital days: (1) effective pain management at home, (2) effective pharmacologic management in the inpatient setting, and (3) effective nonpharmacologic pain management and implemented 4 interventions (Fig 1). Before program implementation, families received a letter detailing the program initiatives (Supplemental Fig 5) and were educated during clinic visits. Education sessions were held to educate residents and nursing staff to ensure all stakeholders were committed to the program. The chronology of the interventions is listed in Table 1.

FIGURE 1

Key driver diagram for SCD VOC quality-improvement project. ED, emergency department.

FIGURE 1

Key driver diagram for SCD VOC quality-improvement project. ED, emergency department.

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TABLE 1

Time Line of Interventions

InterventionsInitiation Date
SCD order sets October 2012 
Inpatient daily schedule October 2012 
Psychoeducational program October 2012 
Home pain action plan for all patients October 2012 
Individualized plan for high users January 2013 
Team member assigned to high users October 2013 
Biofeedback program October 2013 
High-use group expanded to at-risk patients June 2015 
PED order sets June 2015 
InterventionsInitiation Date
SCD order sets October 2012 
Inpatient daily schedule October 2012 
Psychoeducational program October 2012 
Home pain action plan for all patients October 2012 
Individualized plan for high users January 2013 
Team member assigned to high users October 2013 
Biofeedback program October 2013 
High-use group expanded to at-risk patients June 2015 
PED order sets June 2015 

SCD Order Sets

An order set was developed for VOC admissions in the hospital electronic medical record (EMR). It included a daily schedule, guidelines for hydration, incentive spirometry, and supportive management of complications such as pruritus and constipation. Use of incentive spirometry has been shown to decrease the rate of acute chest syndrome in patients admitted for VOC.17 The pain team helped to develop a separate standardized patient-controlled analgesia order set with instructions for starting and weaning patient-controlled analgesia.

Inpatient Daily Schedule

To enhance structure and improve sleep hygiene, patients were provided a daily schedule that included wake times and bedtimes as well as guidelines for personal hygiene, meals, and out-of-bed activities.

Psychoeducational Program

The team social worker and psychologist implemented twice-weekly psychoeducational groups for children ≥8 years old admitted to the hospital. Patients received instruction in nonpharmacologic pain-management strategies, such as diaphragmatic breathing, guided imagery, and distraction. These interventions have been shown to effectively reduce negative thinking and pain perception in children with SCD.18,19 Education about the disease, self-care, and cognitive-behavioral strategies for the management of emotional distress were also provided.20 

Home Pain Action Plan for All Patients

An individualized pain action plan (Supplemental Fig 4) was developed for each patient, outlining management for mild, moderate, and severe pain. This plan was updated at each clinic visit on the basis of family input. The pain plan was placed under the problem list section in our EMR. Team members on the inpatient unit and in the pediatric emergency department (PED) had access to these plans.

Using a plan-do-study-act cycle, after 3 months and 1 year of program implementation we analyzed data and found no change in the total hospital days, number of admissions, or LOS. However, these analyses identified a small subgroup of patients who had ≥4 admissions per year and accounted for ∼60% of all admissions and hospital days. Risk factor analyses were done to identify factors associated with admissions and high use. On the basis of these analyses, an additional driver of hospital days was identified, and mental health resources and 3 more interventions were implemented.

Individualized Plan for High Users

Patients with ≥4 admissions in a year were identified as high users. Specialized efforts were taken to assist the management of their pain at home. They were seen in the clinic every 1 to 2 months, where the pain plan was reviewed and modified as needed. Pain medications were provided to be started early in a crisis. Patients were instructed to use the infusion room facility for intravenous pain management during weekdays. They were educated about the importance of hydroxyurea, and if not already prescribed, hydroxyurea was started.

Team Member Assigned to High Users

Each high-use patient was assigned to a social worker or psychologist who addressed mental health, family systems, school attendance, and/or compliance with team recommendations for medication, counseling, etc. At a minimum, they were seen at every clinic visit by their mental health provider. Phone calls, school visits, and/or provider coordination were provided depending on the needs of the patient.

Biofeedback Program

The team social worker and psychologist were trained in biofeedback-assisted relaxation training, which was then offered twice weekly to admitted patients. Biofeedback has been shown to play a positive role in pain management.21 

In 2015, during the third year postimplementation, we identified that an important driver not addressed was effective pain management in the PED. We also identified that the high-use group changed with time; there were patients with 3 admissions per year who were at risk for becoming high users. Two additional interventions were added: expanding the high-use group to include at-risk patients and effective pain management in the PED.

High-Use Group Expanded to At-Risk Patients

The strategy for high users was incorporated for 20 at-risk patients. To meet the needs of the expanded high-use group, now at 30 patients, 2 additional mental health providers were accessed from the Yale Child Study Center.

PED Order Sets

A standardized SCD pain order set was implemented in the PED. PED health care providers were educated regarding optimal pain management and the individualized home pain plans located in the EMR. Thus, patients could be discharged from the hospital on their own pain plan.

Data were gathered from the hospital database regarding patient characteristics, the number of admissions, LOS, hospital days, and 30-day readmissions. Changes in the aggregate number of admissions, hospital days, and LOS between the preintervention period (October 2011 to September 2012) and postintervention final-12-month period (October 2015 to September 2016) were compared by using Student’s t tests for continuous variables and χ2 tests or Fisher’s exact tests (if cell count was <5) for categorical variables. Two-tailed P values are reported.

The primary outcome measure was hospital days for patients admitted with a SCD VOC. The day of admission was counted as day 1, and a new day began at midnight. As a secondary measure we collected the overall direct cost of care for patients admitted for a SCD VOC. As a balancing measure, we recorded 30-day readmissions for patients admitted for VOC.

To identify risk factors associated with admissions and high use, charts of all admitted patients were reviewed. Unadjusted and adjusted nonlinear mixed-effects models were used in patient-level analyses to account for multiple admissions per patient. Poisson regressions with a subject-specific random effect were conducted to determine the predictors (eg, age, sex, mental health diagnosis, SCD genotype, family composition, and hydroxyurea prescription) associated with number of admissions over time. Logistic regressions with a subject-specific random effect were used to identify any predictors associated with ≥4 admissions per year.

We used statistical process control charts to evaluate the impact of our interventions. Statistical process control uses statistical methods to analyze common cause variability, to produce control limits to assess the process capability, and to identify special cause variation or incidences of statistically significant variability.

Cost-of-care analyses were done by calculating direct hospital costs, not charges.

This project met institutional standards for quality improvement that did not require institutional review board review or informed consent and/or assent to be obtained. Review of records required for analysis of this quality-improvement initiative was approved by the Yale University Human Investigation Committee.

A total of 216 patients with SCD were managed in our program in October 2011. Over the next 5 years, the number of patients in the program increased by 14%. A total of 89 new patients were added, and 57 patients either moved or transitioned to the adult SCD program. There were 248 patients at the completion of the project in 2016 (Table 2).

TABLE 2

Admission Data on SCD Patient Cohort

PreinterventionYear 1Year 2Year 3Year 4
Patients with SCD 216 223 221 239 247 
 New  15 16 27 19 12 
 Moved and/or transitioned 18 11 11 
Patients admitted, admissions per year 55 51 57 54 33 
 1–3 42 38 48 44 26 
 ≥4 13 13 10 
Admissions 148 157 125 130 86 
Hospital d, admissions per year  692 753 597 468 329 
 1–3 267 272 302 237 142 
 ≥4 425 481 295 231 187 
PreinterventionYear 1Year 2Year 3Year 4
Patients with SCD 216 223 221 239 247 
 New  15 16 27 19 12 
 Moved and/or transitioned 18 11 11 
Patients admitted, admissions per year 55 51 57 54 33 
 1–3 42 38 48 44 26 
 ≥4 13 13 10 
Admissions 148 157 125 130 86 
Hospital d, admissions per year  692 753 597 468 329 
 1–3 267 272 302 237 142 
 ≥4 425 481 295 231 187 

A total of 122 patients with a mean age of 10.68 ± 5.65 years were admitted between 2011 and 2016 for VOC. There were 59 male and 63 female patients, and the majority of patients had homozygous SS disease (88 patients, SS; 19 patients, SC; 6 patients, Sβ0−thalassemia; 9 patients, −Sβ+-thalassemia). In the preintervention period, 36 patients were on hydroxyurea, and 4 patients were on chronic transfusion.

The number of patients admitted ranged from 33 to 57 per year and decreased from 55 patients (25.4% of total patients) in the preintervention period to 33 patients (13.3% of total patients) in the postintervention final-12-month period (P = .001). The number of admissions ranged from 86 to 157 per year and decreased from 148 in the preintervention period to 86 admissions in the postintervention final-12-month period (54.7% decrease). The total number of hospital days for VOC decreased from 59.6 days per month in the preintervention period to 23.2 (61% reduction) in the postintervention final-12-month period (P < .001). Average LOS decreased from 4.78 days (SD = 4.08) in the preintervention period to 3.84 days (SD = 2.10) in the postintervention final-12-month period (P = .02).

During the project, 25 patients were high users in at least 1 year. Fourteen of these patients were high users for at least 2 years. In the preintervention period, the high users accounted for 6% of the total cohort but used 61.4% of all hospital days, which did not change in the first year after program implementation (Table 2).

Unadjusted analyses of risk factors revealed that older age at admission (mean change per 1 year of age = 1.1; P < .001), mental health diagnosis (mean change = 3.7; P < .001), and hydroxyurea prescription (mean change = 2.2; P = .01) were associated with more admissions. In the adjusted analysis, age (mean change = 1.3; P < .001) and a hydroxyurea prescription (mean change = 1.8; P = .01) continued to be associated with a higher number of admissions. There was a mental health−by-age interaction; admissions were associated with older children who had a mental health diagnosis (mean change = 1.1; P = .26). Sex, family composition, and disease genotype were not significant.

A multivariable random-intercept logistic regression analysis revealed that older age (odds ratio [OR] = 1.5; P = .02), mental health diagnosis (OR = 66.6; P = .001), and hydroxyurea prescription (OR = 6.2; P = .01) were associated with ≥4 admissions per year. Sex, disease genotype, and family constellation were not associated with membership in this group.

Over the project period, the number of high-use patients decreased from 6% of the total cohort in the preintervention period to 2.8% of the total cohort in the postintervention final-12-month period. The number of hospital days in the high-use group decreased from 35.4 days per month in the preintervention period to 15.5 days per month in the postintervention final-12-month period (66% reduction) compared with a decrease from 22.2 to 11.8 days per month (47% reduction) in the low-user group.

Special cause variation was achieved in April 2014 with a shift of the centerline from 59.6 to 38.3 days per month. As shown in Fig 2, this was achieved 19 months after the start of all interventions and 8 months after individualized plan and mental health services for high users. Special cause variation was achieved again in February 2016 with a decrease to 23.2 days per month 8 months after the expansion of mental health services and identification of at-risk patients. There was special cause variation in 30-day readmissions in April 2014 from a baseline 30-day readmission rate of 33.9% to a centerline shift to 19.4% (Fig 3).

FIGURE 2

Hospital days per month for SCD VOCs. CL, control limit; LCL, lower control limit; UCL, upper control limit.

FIGURE 2

Hospital days per month for SCD VOCs. CL, control limit; LCL, lower control limit; UCL, upper control limit.

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FIGURE 3

Thirty-day readmission percentage for patients admitted for SCD VOCs. CL, control limit; UCL, upper control limit.

FIGURE 3

Thirty-day readmission percentage for patients admitted for SCD VOCs. CL, control limit; UCL, upper control limit.

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No additional full-time equivalent or clinic sessions were employed for this project. The average direct cost of a hospital day during the project was $1271. The baseline direct hospital cost was $75 750 per month or $909 000 per year. This figure does not include charges. In the final year of the project, the average monthly cost was $29 490 or $353 880 per year for an overall decrease of $555 120 in direct hospital costs.

Our quality-improvement project for pediatric SCD patients achieved a 61% reduction in hospital days for SCD VOC sustained over 5 years, exceeding our objective. Nineteen months after program initiation, the 30-day readmission rate dropped by 57% to a centerline shift of 19.4%. As a result, direct hospital costs decreased by $555 000 per year in the final year of the project.

To our knowledge, this is the first quality-improvement project of this duration and expansive nature in pediatric SCD. Our project took a multisystem approach with interventions occurring across settings. Studies have focused on decreasing admissions through interventions in the outpatient setting, but none took a comprehensive approach. Our application of an outpatient multidisciplinary pain-management program successfully reduced admissions by 50% among a small group of patients.22 Standardizing the creation of individualized pain plans for effective management in the emergency department resulted in a 24% decrease in admissions.10 

In addition to taking a multisystem approach, our quality-improvement project is the first to target pediatric high users as well as at-risk patients with the goal of preventing them from becoming high users. In most patients with SCD, VOCs are managed at home, and >2 admissions per year is unusual.23,24 A key observation we made was that a small subset of patients used 60% of hospital resources, consistent with findings in the adult population.13 Therefore, special attention was given to the needs of these individuals. The majority of the high-use patients were on chronic transfusion or hydroxyurea (68%) in the preintervention period, but studies reveal that only ∼50% of patients are adherent as measured by prescription refills.24,30 More frequent clinic visits to optimize health care (reinforcing hydroxyurea use and emphasizing home pain management) was imperative. Additionally, we identified that having a mental health disorder was a risk factor for high use. Frequent admissions and prolonged hospital stays have been shown to be associated with depression and anxiety,14,16 and addressing mental health needs was an important step to improving the care of this population.

Another important intervention we did was to identify patients at risk for becoming high users and provide them with the same individualized care as high users receive. This approach helped patients avoid becoming at risk. As a result, the number of high users decreased from 6% of the cohort in the preintervention period to <3% in the final year of the program.

In addition to a reduction in hospital days for SCD VOC, we observed a decrease in average LOS as well as a decrease in readmissions. Although it is difficult to determine the relative contribution of each intervention, in the first year after implementation, we did not observe any change in the number of admissions or hospital days. The first decrease was observed 8 months after targeting the high-use group; the second special cause variation was seen after the at-risk group was targeted. Thus, it appears that the biggest impact was achieved after providing individualized care to the high-use group. It is also possible that continued education on effective use of home pain plans or complementary pain-management strategies was required before seeing change.

There are limitations to this quality-improvement project. It was implemented within a single institution, thus restricting generalizability of the findings. The interventions used, however, were simple and likely reproducible. At our institution, we were able to deliver these interventions without an increase in personnel or additional outpatient clinic sessions; rather, these changes were accomplished with reallocation of existing resources, particularly mental health personnel. Diminished number of hospital days over the course of this project might be attributed to the transition of the older patients; however, in addition to an overall increase in our patient population, the younger patients also aged. Finally, we do not know if patients were readmitted to another area hospital, but this is unlikely.

This highly reproducible and sustainable quality-improvement project resulted in a significant reduction in hospital days and improved the care and quality of life of a vulnerable patient population. Standardizing care was important, but expanding nonpharmacological strategies contributed significantly to the project’s success.

Dr Balsamo contributed to the project conception and design, collected and analyzed the data, and critically reviewed and revised the manuscript; Dr Shabanova contributed to the statistical analysis and critically reviewed and revised the manuscript; Ms Carbonella contributed to the project conception and design and critically reviewed and revised the manuscript; Ms Szondy contributed to the project conception and design, collected the data, and critically reviewed and revised the manuscript; Ms Kalbfeld and Drs Santucci and Thomas contributed to the project conception and design and critically reviewed and revised the manuscript; Dr Pashankar contributed to the project conception and design, analyzed and interpreted the data, wrote the manuscript, and critically reviewed and revised the manuscript; Dr Grossman contributed to the project design, interpreted the data, and critically reviewed and revised the manuscript; and all authors approve the final manuscript as submitted and agree to be accountable for all aspects of the work.

FUNDING: No external funding.

     
  • EMR

    electronic medical record

  •  
  • LOS

    length of stay

  •  
  • OR

    odds ratio

  •  
  • PED

    pediatric emergency department

  •  
  • SCD

    sickle cell disease

  •  
  • VOC

    vaso-occlusive crisis

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Competing Interests

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.

Supplementary data