This document discusses the implementation of a psychosocial distress screening program at the Robert H. Lurie Comprehensive Cancer Center. It describes barriers to screening, the use of a computerized adaptive testing system to efficiently measure multiple domains of distress, and lessons learned from piloting the program. Screening results are integrated into patients' electronic health records and trigger messages to clinicians if severe distress is reported, in order to better manage patients' psychosocial needs. The goal is to systematically identify and address sources of distress throughout the cancer care process.

1. Psychosocial Distress Management at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University Nan Rothrock, PhD Department of Medical Social Sciences Northwestern University

2. Agenda Guidelines for psychosocial distress screening Barriers to screening Pilot project at Lurie Comprehensive Cancer Center Lessons learned

3. Distress A multifactorial unpleasant emotional experience of a psychological cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment. Distress extends along a continuum, ranging from common normal feelings of vulnerability, sadness, and fears to problems that can become disabling, such as depression, anxiety, panic, social isolation, and existential and spiritual crisis. National Comprehensive Cancer Network. NCCN Distress Management Guidelines version 1. 2011.

4. Increasing Attention on Screening for Psychosocial Distress in Cancer Institute of Medicine’s Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs (2007) Importance of distress screening Importance of addressing psychosocial health in quality cancer care NCCN “Distress should be recognized, monitored, documented, and treated promptly at all stages of the disease and in all settings” National Comprehensive Cancer Network. NCCN Distress Management Guidelines version 1. 2011.

5. Commission on Cancer American College of Surgeons (ACoS) Commission on Cancer (CoC) 2012 Cancer Program Standards “The cancer committee develops and implements a process to integrate and monitor on-site psychosocial distress screening and referral for the provision of psychosocial care as the standard for patients with cancer” Oversight by psychosocial representative on cancer committee

6. CoC Requirements Minimum frequency – once per pivotal medical visit (eg, diagnosis, transitions in treatment, transitions off treatment) Mode of assessment determined by program Preference for standardized, validated tools with established clinical cutoffs

7. CoC Requirement (cont.) Moderate/severe distress “Identify and examine the psychological, behavioral, and social problems of patients that interfere with their ability to participate fully in their health care and manage their illness and its consequences” After identifying needs, link to appropriate psychosocial services on site or by referral Documentation in medical record (screening, referral/provision of care, follow-up) IOM Report. 2007.

8. HOW?

9. Barriers How do I measure distress? How do I know what level of distress warrants follow-up? How do I get that information to someone who can do something about it?

10. Measurement MANY distress measures (Distress Thermometer, Hospital Anxiety and Depression Scale [HADS], Patient Health Questionnaire [PHQ]-9, etc)

11. Single-Item Distress Thermometer Quick, easy, but not always sufficient Butt Z, et al. J Pain Symptom Manage. 2007; 35:20-30.

12. Measurement Ideal measure: brief, precise, covers relevant issues in cancer How can you be brief AND comprehensive? Computer Adaptive Tests (CATs)!

14. Are you able to run or jog for 2 miles?

15. Are you able to walk a block on flat ground?

16. Are you able to walk from one room to another?

17. Are you able to stand without losing your balance for 1 minute?

19. Cutpoints Established cutpoints (within normal limits, mild, moderate, severe) Based on panels of clinical experts Severe category warrants messaging at Lurie

20. Getting the Right Info to the Right People Integration into electronic health record - More comprehensive system Messaging to appropriate clinician (oncologist vs social worker) - Improve daily workflow and time management

21. Distress Screening at Lurie Patients access Epic MyChart (patient portal) Seamlessly navigated to Assessment Center Patient fills out measures on Assessment Center Scores pushed into Epic under Other Orders In-basket message when results are in Severe category or patient identifies need

22. Measures PROMIS CATs Depression Anxiety Fatigue Pain interference Physical function Discipline-Specific Social work needs Informational needs Nutritional status Modified Patient-Generated Subjective Global Assessment (PG-SGA) ~ 40 questions

23. In-Clinic Assessment

24. Sample Depression Question

25. Sample Social Work Needs Question

26. Screening Triage Algorithm

27. Provider Messaging: Symptom Reports Message provides total score, range, and patient’s answers The following items contributed to a score of Severe In the past 7 days: “I felt worried.” – Often “I felt frightened.” – Sometimes

28. www.cancer.northwestern.edu/support Psychosocial Resources

29. Pilot Tests Phase 1: Pilot administration via iPad Phase 2: Administer via home-based assessment and iPad with improved usability Phase 3: Administer per clinical practice

30. Phase 1: Usability of iPad Assessment 12 Gynecologic oncology patients Median age = 61.5 (range, 34-73) Administration approximately 10 minutes (range, 8-16 minutes) 20% required assistance 12/12 patients would complete at every MDV Sample feedback: Font too small

31. Phase 2: Real-Time Workflow in Clinic N = 11 Median age = 54 (range, 35-76) Mean 1.6 minute to distribute iPad and check-in patient Administration 10.7 minutes (range, 6-22 minutes) 64% complete in waiting room; 27% finish in exam room 18% required tech assistance (Internet connection)

32. Patient Feedback

33. Patient Feedback

34. Patient Feedback

35. Patient Feedback

36. Clinic Staff Feedback

37. What Have We Learned?

38. Lessons Learned Integration of software systems takes longer than you think it should Clinicians, patients, operations staff, and software vendors have competing urgencies requiring prioritization Each group has own language and culture And not all members of a group are alike Patients are not as scared of technology as some may think Logistic issues are critical and should be considered at the outset of an initiative

39. NextSteps Implementation in clinic for all new patients receiving treatment at center (not 2nd opinions) Set up schedule for follow-up assessments (eg, monthly) Later -> customized assessment per provider (eg, incorporate neuropathy-specific measure for taxanes)

40. Thank You! Acknowledgments Funding provided by the Lurie Comprehensive Cancer Center Resources: www.lurie.northwestern.edu www.mss.northwestern.edu www.nihpromis.org David Cella Lynne Wagner Laura Abraham Kile King Richard Gershon Julian Schink Darren Kaiser RohiniBahl I. Syed Steven Rosen Mary Jo Graden Virginia Nothnagel Mary O’Connor Shalini Patel Michael Bass