Implementing Guidelines for Sickle Cell Disease Management into Practice

1. Implementing Guidelines for Sickle Cell Disease Management into Practice Marsha J. Treadwell, PhD 5 September 2019

2. Disclosure No one involved in the planning or presentation of this activity has any relevant financial relationships with a commercial interest to disclose

3. Objective • Describe barriers and facilitators to the implementation of guideline based care in sickle cell disease within healthcare institutions, with particular focus on acute pain management

4. Snyder Advocating for Change 2006

5. Guidelines for SCD Care • Early guidelines largely consensus based • American Pain Society – Management of Acute and Chronic Pain in Sickle Cell Disease • NHLBI offered evidence based guidelines in 2014 • Essential to determine pain characteristics, associated symptoms, location and intensity of pain based on patient self-report Yawn et al JAMA 2014; 312: 1033- 48 Benjamin et al APS Clinical Practice Guidelines Series #1 1999

6. Existing and Upcoming Guidelines • National Institute for Health and Care Excellence (NICE) guidelines – UK • American Society of Hematology – to be released 2019 • American College of Emergency Physicians - Emergency Department Sickle Cell Care Coalition - 2019 • California state guidelines – under leadership of Dr. Vichinsky - 2019 • Effective strategies for implementation available and under study at Duke University

7. DeBaun, Vichinsky UpToDate 2019 uptodate.com

8. Process for Developing SCD Guidelines • NHLBI evidence based guidelines • Agency for Health Research and Quality commissioned systematic reviews of available evidence for clinical management • Expert panel convened to review the evidence and to hear synthesis of evidence from other experts and to hear affected individuals and families report on their experiences • Panel authored guidelines that were opened to public comment, then finalized

9. Barriers to Guideline Implementation • Institutional and broader priorities • Resources • Policies, e.g. opioid prescribing • Evidence base • Provider knowledge of, comfort with implementation • Unconscious bias • Lack of cohesion among stakeholders to present consistent message

10. Implementation at Institutional Level • Institutional Quality office may be place to start, but also ED or Sickle Cell Center • Stakeholders bring concern that institution not providing or improving health care consistent with their goal and mission – quality and safety • Multidisciplinary team establishes process for implementation • Distill guidelines for care providers

11. Implementation at Institutional Level • Establish baseline of current metrics • Operationalize strategies for implementation • Order sets, preferably in EHR • Note templates • Partner on quality improvement initiatives • QI models and processes look different in different settings, but there are requirements for Performance Improvement activities • Intensive and ongoing education about the guidelines

12. Multidisciplinary Team • Individuals with SCD/Family Members • Evidence Based Medicine/Implementation specialist • Hematologist • Hospitalist • Outpatient Family Medicine • Anesthesiology/Palliative Care/Pain specialist • Informatics • Pharmacy • Nursing

13. Metrics and Outcomes • Are the guidelines being used? • Time to first dose of analgesia • Time to second and third doses • Pain score • Medications used/dosing • Outcomes • Length of stay • Readmissions • Patient experience/satisfaction • Acute chest syndrome

14. Example: BCHO Pain Management Guideline Implementation • Team of ED and Sickle Cell Center staff began to work on revising existing SCD pain management guidelines • Baseline chart reviews to document timing of assessment and treatment in ED • Process mapping to identify barriers and facilitators to timely and appropriate management • Received support from the HRSA Sickle Cell Disease Treatment Demonstration Program • Created nursing driven order set on paper then in HER • ED Fellow major champion

15. Metrics and Outcomes • Time to first dose of analgesic • Percent of patients who receive 1st pain assessment within 30 minutes of triage • Percent of patients who are reassessed within 30 minutes of 1st analgesic dose • Percent of ED staff (MD and nursing) trained on SCD pain management guidelines • Length of stay in ED • Percent admitted/discharged home • Patient/family satisfaction • Improvement in pain scores

16. Minutes • Monthly Average • --- Upper and lower control limits (3 standard deviations from mean) • - Mean of monthly averages Treadwell et al J Clin Outcomes Manage 2014;21:62-70

17. Preparation • Create Awareness and Interest • Build Knowledge and Commitment • Pursue Integration and Sustained Use Implementing Guidelines into Practice • Promote Action and Adoption • Evaluate Cullen, Adams J Nurs Admin 2012; 42: 222-30

18. Facilitators to Guideline Implementation • Champions • Stakeholder advocacy • Data – risk management, financial • Organizational priorities • Philosophy of care • Ongoing awareness and education • Staff meetings, electronic health record, intranet, in-person trainings

19. Take-Aways • Existence of guidelines not enough, nor is requirement that guidelines be implemented • Settings vary in barriers and facilitators to implementation • Barriers, facilitators, metrics must be assessed initially • As stakeholders, define your goals, role in the process • Identify champions, owners of process • Operationalization requires diverse teams, particularly nursing

20. Take-Aways • Ongoing evaluation, tracking of metrics and outcomes • Look for unanticipated negative consequences • Ongoing education absolutely essential • Health disparities contributing to suboptimal pain management cannot be ignored

21. Evaluate and plan again • Using what resources? • What will be done? • By whom? Action Plan for Guideline Implementation in Your Institution • By when? Advocating for Change Community Toolbox 2018 ctb.ku.edu

22. Resources • Emergency Department Sickle Cell Care Coalition acep.org/by-medical-focus/hematology/sickle-cell/resources/ • Improving Sickle Cell Care in North Carolina sickleaware.nursing.duke.edu • American Society Clinical Practice Guidelines hematology.org/Clinicians/Guidelines-Quality/Guidelines • NHLBI Evidence Based Management of Sickle Cell Disease nhlbi.nih.gov • SCD Managing Acute Episodes in Hospital nice.org.uk/guidance/cg143

23. #SaveSickleCellLives