Improving Care and Outcomes for People with Sickle Cell Disease: Recommendations from the Sickle Cell Disease Treatment Demonstration Program Congressional Report

T h u r s d a y, D e c e m b e r 4 th a t 3 p m E T

National Ins titute for Childr en’s Health Quality

Today’s speakers

Charlie Homer

Suzette Oyeku

Kate Vaughan

Tricia Finnerty

Agenda

• Welcome • Project Overview • Measure Development • Key Outcomes and Findings • Recommendations • How you can use this information?

“Now I am not afraid or apprehensive to go to the emergency room when I am in pain because my doctor and the emergency room representatives were able to come together and develop a great treatment plan for us. It is amazing to be able to walk in the emergency room and know what the protocol is because you were a part of implementing it and to know that there are people out there that care and want us to be treated fairly and not suffer in pain.” – NJ SCDTDP patient

Overview of the Sickle Cell Disease Treatment Demonstration Program

Sickle Cell Treatment Act of 2003 This legislation authorized:  Demonstration

program to increase the number of specialized treatment centers

 National

Coordinating Center to work with the demonstration program sites

Sickle Cell Disease Treatment Demonstration Program • SCDTDP is designed to:  Improve

coordination and service delivery for individuals with sickle cell disease  Improve access to services  Improve and expand patient and provider education

SCDTDP MISSION

To improve care and outcomes for persons with sickle cell disease

Sickle Cell Disease Treatment Demonstration Program Funding Dates

Cohort

States

2006 - 9/2010

1

AL, IL, NC, OH

9/2009 - 9/2014

2

CA, CO, NJ

1/2010 - 12/2013

3

MD, MO

9/2010 - 9/2014

4

IL, OH, PA,TN

9/2014

5*

Heartland Sickle Cell Disease Network, Northeast Coordinating Center, Pacific Sickle Cell Regional Collaborative, Sickle Cell Treatment and Outcomes Research in the Midwest

National reach of HRSA SCD programs

TDP network NBSP network

SCDTDP Grantee Sites 2010-2014

SCDNBSP Grantee Sites 2011-2015

Focus Areas: Domains of Care • Acute Care • Medical Home/Care Coordination • Transition of care • Hydroxyurea

Model for Improvement and IHI Breakthrough Series Model for Improvement

What are we trying to accomplish? How will we know that a change is an improvement?

What change can we make that will result in improvement

Act

Plan

Study

Do

• Learn by testing • All teach—all learn (ideas want to be free) • Track data over time

Measure Development and Results

Measure Development • Based on previously published indicators for quality of pediatric care  Expanded to include care for adults • Expert meeting to refine measure set  External experts  Patients  Parents  Grantee representatives

Findings and Outcomes

Acute Care Average time from triage to administration of first pain medication

Minutes

140 UCL

120 100 80 60 LCL

40 20

Shewhart chart (X-bar chart) representing data from CA SCDTDP, NJ SCDTDP, OH SCDTDP, PA SCDNBSP, MA SCDNBSP, OH SCDNBSP,TN SCDTDP and TN SCDNBSP grantee networks. These grantees saw a decrease of 29 percent in the average time from triage to first administration of pain medication, from 89 minutes at baseline to 63 minutes in May 2014. The April 2014 data point represents extreme data from one network site, which is looking into its data.

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Percentage of sickle cell disease patients who received an initial pain assessment within 30 minutes of contact Percentage

100% 90% 80% 70% UCL

60% 50%

LCL

40% 30% 20% 10%

Shewhart chart (P Chart) representing data from CA SCDTDP, NJ SCDTDP, OH SCDTDP, PA SCDNBSP, MA SCDNBSP, OH SCDNBSP, TN SCDTDP and TN SCDNBSP grantee networks. Nonrandom variation exists with a shift in the mean of the data from 52 percent to 88 percent. It is also notable that these gains have been sustained for several consecutive months, suggesting that grantees have made sustainable change to their emergency departments.

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Medical Home/Care Coordination Percentage of patients with a documented PCP

Percent 100% 90% 80% 70% UCL

60% 50% 40% 30% 20% 10%

Shewhart chart (P chart) representing data from NJ TDP, NY NBSP, OH NBSP, and OH TDP grantee networks. Improvement can be seen from a mean of 33% to a mean of 70%, representing an improvement of 119% throughout the collaborative.

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LCL

0%

Percentage of patients with evaluation by a hematologist within the past 12 months Percent

100% 90% 80% 70%

UCL

60% 50% 40%

30% 20% 10%

LCL

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Shewhart chart (P chart) representing data from NJ TDP, NY NBSP, OH NBSP, and OH TDP grantee networks. Improvement can be seen from a mean of 40 percent to a mean of 94 percent, representing an improvement of 135 percent throughout the collaborative.

Transition of Care California SCDTDP: Percentage of eligible patients receiving transition brochures

Percentage

100% 90%

Median

80% 70% 60% 50% 40% 30% 20% 10%

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Run chart representing data from the CA TDP team. CA TDP was able to increase the percentage of eligible patients receiving a transition brochure to 52 percent (67 of 128 eligible patients) by June 2014, surpassing the goal of 50 percent.

Hydroxyurea Massachusetts SCDNBSP: Percentage of eligible patients on hydroxyurea Percentage

100%

Median

90% 80% 70% 60% 50% 40% 30% 20% 10%

Run chart representing data from MA SCDNBSP team. The MA team was able to increase the percent of eligible patients on hydroxyurea from 50 percent to 75 percent.

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Outcome Measures Percentage of eligible patients taking hydroxyurea

Percentage of patients with at least one ED visit for SCD-related pain in the last month

% of patients

%

Median

Median

Percentage of patients with at least one hospitalization for SCD-related pain in the past month Percentage

Median

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20 18 16 14 12 10 8 6 4 2 0

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April 14

Run chart representing data from 10 teams. The median is 9.75%, and no significant changes can be observed.

Run chart representing data from 10 teams. The collaborative median was reported as 50% during the first quarter and moved to a total of 53% in the final reporting quarter.

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March 14

Sept-Nov 13 Dec 13-Feb 14 Mar-May 14

Run chart representing data from 10 grantees. Non-random variation can be observed in the five consecutive data points from July to December 2013, which show a decrease in this measure.

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Jun-Aug 13

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20

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30

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40

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50

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60

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70

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80

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20 18 16 14 12 10 8 6 4 2 0

Recommendations

Recommendations for clinical delivery and public health programs • Acute care  Rapidly

triage patients and perform appropriate assessments  Use age-appropriate pain assessment tool  Start pain medications within 30 minutes of triage or within 60 minutes of registration.  Standardize use of pain protocols  Develop pain management plans  Consider use of more easily administered medications to relieve pain while IV access is being obtained

Recommendations for clinical delivery and public health programs • Medical home and care coordination  Use

care management plans jointly developed by primary care providers, specialists, hospitalists and other inpatient providers with patients and families  Implement systems to increase rates of appropriate screening and preventative interventions  Focus on psychosocial needs as well as the medical needs  Develop process for co-management between primary care provider and specialty provider  Consider use of community health workers or patient navigators to assist with coordinating patient care.

Recommendations for clinical delivery and public health programs • Incorporate all six core elements of transition  Develop

transition policy  Develop a process for tracking and monitoring transition-age youth  Assess and use transition readiness assessments  Planning for transition  Transfer of care  Transfer completion

• Expanded education about hydroxyurea  Discussion

of risks and benefits  Incorporate patient preferences and values in decision making

Recommendations for clinical delivery and public health programs • Involve community-based organizations

as partners in programs to improve care for individuals with sickle cell disease across the lifespan  Review

and development of materials,  Pilot testing of tools  Educational outreach and training of physicians, nurses, medical students, and members of the community  Providing self-management training

Implementing Clinical Recommendations • Model Protocol and Compendium of Resources  Detailed

recommendations of high level changes to improve care organized by dimension of sickle cell care – Acute care – Medical home/care coordination – Screening and follow up – Transition of Care – Hydroxyurea

 Listing

of resources used by teams as they implemented changes in their health systems  http://sicklecell.nichq.org

Recommendations for clinical delivery and public health programs Data Systems and Quality Improvement • Implement data systems that enable management of the entire population served through a clinical system or in a geographic area and track key outcomes • Use systematic approaches to quality improvement, based on data, family engagement, and evidence. • Involve parents and patients in the design and implementation of quality improvement activities

Recommendations for health policy • Develop new payment models that ensure all patients with

sickle cell disease have consistent insurance access to high quality care that is linked to a quality performance reporting and improvement system

Recommendations for health policy • Develop new payment models that ensure all patients with

sickle cell disease have consistent insurance access to high quality care that is linked to a quality performance reporting and improvement system • Adjust Medicaid payment policies and reimbursements rates to include care coordination services for this population

Recommendations for health policy • Develop new payment models that ensure all patients with

sickle cell disease have consistent insurance access to high quality care that is linked to a quality performance reporting and improvement system • Adjust Medicaid payment policies and reimbursements rates to include care coordination services for this population • CMS should develop risk based capitation strategies for sickle cell disease

Recommendations for health policy • Develop new payment models that ensure all patients with

sickle cell disease have consistent insurance access to high quality care that is linked to a quality performance reporting and improvement system • Adjust Medicaid payment policies and reimbursements rates to include care coordination services for this population • CMS should develop risk based capitation strategies for sickle cell disease • Consider reporting data on re-admissions for sickle cell disease in hospitals

Recommendations for health policy • Adopt recently developed performance measures for sickle cell

disease into insurance programs across the lifespan. • Develop workforce training programs or financial incentives for health care professionals interested in caring for individuals with sickle cell disease • Incorporate sickle cell disease specific requirements in federal regulations for meaningful use

What’s next? What can I do?

SCDTDP 2014- 2017 • HRSA funded four regional centers:

–Heartland – Missouri, Iowa, Kansas, Nebraska –Midwest – Ohio, Illinois, Indiana, Michigan, Minnesota, Wisconsin –Northeast– Maryland, Delaware, New Jersey, New York, Pennsylvania, Puerto Rico, US Virgin Islands,Virginia, Washington, DC, and West Virginia –Pacific– California, Alaska, Arizona, Guam, Hawaii, Idaho, Nevada, Oregon, and Washington

SCDTDP 2014- 2017

• Goals:

 Increase

the number of providers treating patients with sickle cell disease.  Increase the number of providers treating patients with sickle cell disease who are prescribing hydroxyurea.  Increase the number of sickle cell patients receiving care from providers who are knowledgeable about sickle cell disease.

SCD Treatment Demonstration Program Reauthorization • Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2014 introduced to this summer

• Sponsored by Representative Danny Davis, IL • House committee on Energy and Commerce • Referred to Subcommittee on Health • Sickle Cell Disease Association of America: www.sicklecelldisease.org

Congressional Report, Model Protocol & Compendium of Resources

sicklecell.nichq.org

• Patients: use to advocate for improved care and resources

• Patients: use to advocate for

improved care and resources

• Community Based

Organizations: use to inform community work, share resources with providers in your community

• Patients: use to advocate for

improved care and resources

• Community Based Organizations:

use to inform community work, share resources with providers in your community

• Providers: consider implementing clinical recommendations and use team resources in your practice

• Patients: use to advocate for

improved care and resources

• Community Based Organizations:

use to inform community work, share resources with providers in your community

• Providers: consider implementing

clinical recommendations and use team resources in your practice

• Policy: use recommendations for

redesign of healthcare and healthcare financing related to SCD care

Thank You

SCDTDP Grantee Sites

SCDNBSP Grantee Sites