Using the FS-ICU Instrument: Understanding and Improving Family Satisfaction in a Neuro ICU

1. Using the FS-ICU Instrument: Understanding and Improving Family Satisfaction in a Neuro ICU David Y. Hwang, MD Assistant Professor of Neurology Division of Neurocritical Care and Emergency Neurology Yale School of Medicine Jennifer Robinson, APRN Yale-New Haven Hospital

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5. David Hwang, MD Assistant Professor of Neurology Division of Neurocritical Care and Emergency Neurology Yale School of Medicine

6. Jennifer Robinson, APRN Neuroscience ICU Yale-New Haven Hospital Adjunct Faculty Yale University

7. Using the FS-ICU instrument: Understanding and improving family satisfaction in a Neuro ICU SCCM Project Dispatch Webcast 02/05/2014 David Y. Hwang, MD Assistant Professor of Neurology Yale Division of Neurocritical Care and Emergency Neurology Jennifer Robinson, APRN Yale Neuroscience

8. Disclosures • David Y. Hwang, MD • American Brain Foundation Practice Research Training Fellowship • Remedy Pharmaceuticals, Inc. (GAMES-RP clinical trial site PI) • Bayer HealthCare (legal consulting) • Oxford University Press (book) • Jennifer Robinson, APRN • None

9. ngm.nationalgeographic.com

10. www.grassrootsmusic.org

11. Outline • Importance of research on ICU family experiences • Available survey tools for assessing family satisfaction • Focus on FS-ICU • Multidisciplinary team approach at Yale for collecting survey data • Details of data collection setup, including troubleshooting problems • Recent survey results from Yale-New Haven Hospital Neuro ICU • Possible future directions

12. Importance of research on ICU family experiences • Institute of Medicine 2001 report • Recommendation for healthcare delivery to be “patient-centered” • Shared decision making • Coordinated care • Physical/emotional support • Culturally competent IOM. National Academies Press 2001

13. Importance of research on ICU family experiences Crit Care Med 2007;35:605

14. Importance of research on ICU family experiences • As of October 2012, the Affordable Care Act ties consumer satisfaction to hospital reimbursement • Medicare withholds 1% of normal reimbursement for a “bonus fund” • Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey • Assesses patients’ perception of care • Scores factored into bonuses www.washingtonpost.com/blogs/wonkblog

15. Importance of research on ICU family experiences • Does family satisfaction with ICU care correlate with long-term family outcomes? • Caregiver burden for survivors • Grief and bereavement for nonsurvivors • Postintensive care syndrome (PICS-F) • Anxiety • Depression • PTSD • Acute Stress Disorder Rothen et al. CurrOpinCrit Care 2010;16:623 Davidson et al. Crit Care Med 2012;40(2):618

16. Importance of research on ICU family experiences • Despite existing controversies and uncertain influence of family satisfaction on long-term patient and family outcomes: • Satisfaction with medical care has become an important quality metric; • Surveys such as HCAHPS typically capture satisfaction data from patients themselves over the course of an entire hospital stay; • Quality improvement in ICUs should ideally be guided by ICU-specific information; • ICU family satisfaction research has thus received increasing attention over the past decade.

17. Rothen et al. CurrOpinCrit Care 2010;16:623

18. Available survey tools for assessing family satisfaction • Critical Care Family Needs Inventory (CCFNI) • Critical Care Family Satisfaction Survey (CCFSS) • Family Satisfaction in the ICU (FS-ICU) • FS-ICU 34 • FS-ICU 24 Kentish-Barnes et al. Crit Care Med 2009;37(10):S448

19. Johnson et al. Crit Care Med 1998;26:266

20. Wasser et al. Crit Care Med 2001;29:192

21. FS-ICU • Initially designed as a 34-item survey • Half of items address satisfaction with overall care • Half of items address satisfaction with the shared decision making process • Survey refined and revalidated in 2007 as a 24-item version Heyland et al. J Crit Care 2001;16(4):142 Wall et al. Crit Care Med 2007;35:271 Heyland et al. Crit Care Med 2002;30:1413 www.thecarenet.ca

22. FS-ICU • Available for free on the Internet • Items are mostly scored on a 5-point Likert scale • Each item can be scored out of 100 points • Some overlap with patient HCAHPS questions • Wide use in the literature • Multiple large observational cohorts • Used as outcome instrument for intervention studies Heyland et al. J Crit Care 2001;16(4):142 Wall et al. Crit Care Med 2007;35:271 Heyland et al. Crit Care Med 2002;30:1413 www.thecarenet.ca

23. FS-ICU

24. FS-ICU • 3 items for family members whose relatives died during ICU stay: • Length of unnecessary prolongation of life • Comfort • Support by care team during family member’s death

25. FS-ICU • Recent ICU interventional trial using the FS-ICU as outcome instrument • Qualitative analysis of write-in comments performed • Recurring topics • Timeliness of information received • Appropriateness of communication in the patient care area • Comportment (professional vs. rude communication) Shaw, Davidson et al. Crit Care Med 2014;42(2):265

26. Yale multidisciplinary team • Approval by local IRB • Multidisciplinary approach vital to success • Recruitment of diverse group • Low turnover of team • Core group of 5 members recruiting families • Led by physician and NP • Nursing leadership • CNS • ICU nurse manager • Physician assistant • Staff RNs • PA student • Unit business associate / secretary

27. Nuts & bolts of data collection • Monthly reminders to group to sign up for “call schedule” (M-F) • Recorded in group Google calendar account • “On-call” responsibilities: • Patient selection • Enrollment • Data collection • Timeline • Window for recruitment 24 hours prior and 8 hours after discharge from ICU • Family member selection • Exclusion Criteria • Admission <72 hours, unless made comfort measures • Non English speaking

28. Nuts & bolts of data collection • Survey converted from paper to Google survey • Only de-identified information online • Family and patient demographics stored separately • Automatically inputs results into Excel spreadsheet • Expired patients collected separately • Mailed letter detailing research study and paper version of survey • ~1 month passed before contact • Additional patient demographics of interest collected • Attending of record • Code status • Insurance • Education of family member • Diagnosis

29. Challenges • Workflow • Time consuming • Harder once patient transferred out of ICU • Resources • No dedicated research assistant • Not funded • Technical Issues • Family Response • ~55% response rate for survivors • Interest

30. Benefits • Fostering teamwork • Involvement of bedside nurses in varied aspects of research • Exploring our own strengths and weaknesses • Waiting room • Feedback from families

31. Neurocritical Care Society 2013 conference abstract • Satisfaction with Emotional Support Provided in a Neuroscience Intensive Care Unit Among Families of Surviving Patients with a Neurosurgeon Versus Neurointensivist as the Attending of Record

32. NCS abstract chart 1: Most common diagnoses

33. NCS abstract chart 2: Patient demographics

34. NCS abstract figure: Emotional support • Families reporting complete satisfaction with emotional support • p = 0.04

35. NCS abstract: Conclusions • In our NICU, neurosurgery families are more likely to be completely satisfied with the emotional support received from staff compared to neurology families. • Questions: • Does a longer average length of stay allow NICU staff to build more of a relationship with neurosurgery families? • Do families feel more support with dual teams & attendings (NICU and neurosurgery) following? • Do neurosurgery families feel more support with a neurosurgery attending who does not change weekly (vs. rotating intensivists)?

36. Influence of year-round neurointensivist coverage p=0.0505

37. Influence of year-round neurointensivist coverage p=0.0568

38. Families with prior ICU experience vs. new to ICU Hwang DY, Robinson J, et al. Crit Care Med 2013;41(12):S830

39. Possible future directions • Advantages of having ongoing ICU family satisfaction data collection: • Improved understanding of our local Neuro ICU at Yale • Can help target ICU resources for quality improvement • Approval by Institutional Review Board allows for ongoing analysis and publication/presentation of observational data • Built-in pre- and post-assessments for any future interventions or change in practice that the team wishes to pursue • Available pilot data for future grant applications • Multidisciplinary ICU team building

40. Possible future directions • Future analysis may focus more on surveys from families of those patients who have been made comfort measures only in the Neuro ICU • Of note, prior analyses have suggested that families of patients who pass away during ICU admission tend to report higher satisfaction than those of patient patients who survive to discharge • We welcome collaboration with other ICUs collecting FS-ICU data • Increased observational power with larger number of surveys • Please e-mail us! Wall et al. Chest 2007;132:1425

41. Our team leaders at Yale • Kelly Poskus, MS, RN • Cindy Bautista, PhD, RN • Jessica White, PA-C • Meghan McAnaney, RN • Anna Coppola, RN • Maria Koursaris, RN • Nathaniel Anderson, PA student • Lavenita Smith, BA • Kevin Sheth, MD, FCCM, FAHA • Emily Gilmore, MD • David Greer, MD, MA, FCCM, FAHA, FNCS • Evie Marcolini, MD

42. Thank you! David Hwang, MD david.hwang@yale.edu Jennifer Robinson, APRN jennifer.robinson@yale.edu