Measuring Patient Reported Outcomes

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Putting the Patient First: Measuring Patient Reported Outcomes Matt Hutter, MD, MPH Director, The Codman Center for Clinical Effectiveness in Surgery Codman- Warshaw

1 Putting the Patient First: Measuring Patient Reported Outcomes Matt Hutter, MD, MPH Director, The Codman Center for Clinical Effectiveness in Surgery Codman- Warshaw Endowed Chair in Surgery ASMBS Secretary/Treasurer President Mass. General Hospital ACS Quality and Safety Conference July 23, 2018 Boston, MA Orlando, FL

2 Putting the Patient First: Measuring PROs Disclosures PI in a project supported through a Patient-Centered Outcomes Research Institute (PCORI) Assessment of Prevention, Diagnosis, and Treatment Options Program Award ( ). All statements in this report, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee.

Already in 1900 I had become interested in what I have called the End Result Idea, which was merely the common-sense notion that every hospital should follow every patient it

3 Already in 1900 I had become interested in what I have called the End Result Idea, which was merely the common-sense notion that every hospital should follow every patient it treats, long enough to determine whether or not the treatment has been successful, and then to inquire if not, why not? From the Preface to The Shoulder By Dr. Ernest A. Codman, 1934

merely the common-sense notion that every hospital should follow every patient it treats, long

4 How is success defined? Already in 1900 I had become interested in what I have called the End Result Idea, which was merely the common-sense notion that every hospital should follow every patient it treats, long enough to determine whether or not the treatment has been successful, and then to inquire if not, why not? From the Preface to The Shoulder By Dr. Ernest A. Codman, 1934

5 Putting the Patient First: Measuring PROs why?

Why PROs? Outcomes that matter most to patients (David Cella, PhD PROMIS) We capture Morbidity and Mortality (Death and Destruction) but other domains of quality are more important to patients.

6 Why PROs? Outcomes that matter most to patients (David Cella, PhD PROMIS) We capture Morbidity and Mortality (Death and Destruction) but other domains of quality are more important to patients. We want to know not only if a procedure is safe and effective, but how it affects other aspects of their health and well-being. PROs include the patient s voice in the assessment of whether a treatment was successful

7 Putting the Patient First: Measuring PROs What are PROs? PROs Patient-Reported Outcomes Directly reported by a patient who experienced it. Self reported Without interpretation from a healthcare provider. Allow you to assess aspects of health that patients are the best (and sometimes only) source of information PROs can assess many different outcomes Symptoms (impairments) Function (disability) Health status General health perceptions Quality of Life (QoL) Health related quality of life Ratings of health care. Satisfaction or Experience Recovery

Putting the Patient First: Measuring PROs PROMs vs PROs PROs Patient-Reported Outcomes Directly reported by a patient who experienced it. Self reported and Subjective.

8 Putting the Patient First: Measuring PROs PROMs vs PROs PROs Patient-Reported Outcomes Directly reported by a patient who experienced it. Self reported and Subjective. PROMs Patient-Reported Outcome Measures Metrics or scales to measure or report PROs Translate subjective information into objective data. Rigorously validated to measure what they intend to measure.

9 Birkmeyer, Dimick and Birkmeyer. JACS 2004; 198: 631. Patient centered outcomes including PROs Process measures High caseloads Per hospital Outcome measures (e.g. mortality) Link to processes Low Baseline risk I III II IV High Baseline risk Focus on other procedures Low caseloads Per hospital Structural Measures (e.g. volume)

10 Birkmeyer, Dimick and Birkmeyer. JACS 2004; 198: 631. Patient centered outcomes including PROs Process measures High caseloads Per hospital Outcome measures (e.g. mortality) Link to processes Hernia Repair Cholecystectomy Bariatric Surgery Thyroidectomy Colectomy CEA CABG AVR Low Baseline risk Focus on other procedures Pharyngeal Myotomy I III II IV Meckel s diverticulectomy Low caseloads Per hospital AAA repair MVR Pulmonary lobectomy High Baseline risk Pancreatic resection Esophagectomy Pneumonectomy Structural Measures (e.g. volume)

11 Why measure PROMs? If you cannot measure it, you cannot improve it Lord Kelvin If you cannot measure it, you cannot manage it W. Edwards Deming (?) To drive Continuous Quality Improvement in outcomes that matter most to patients.

12 Patient-Reported Outcomes Wagle, N measures/

13 Patient-Reported Outcomes Wagle, N measures/

14 Patient-Reported Outcomes Wagle, N measures/

. Measuring PROs at 57 median days postop; 45

Global S-CAHPS (Experience) 18 Participating

for a consensus meeting to explore using PROs.

15 Current PRO projects in the ACS Quality Programs: NSQIP PRO Feasibility Pilot Project.. Measuring PROs at 57 median days postop; 45 questions: PROMIS Pain Interference PROMIS Global S-CAHPS (Experience) 18 Participating sites Trauma - Avery Nathens discussed plans for a consensus meeting to explore using PROs. Metabolic and Bariatric Surgery PCORI funded Project Jason Liu, MD

17 Putting the Patient First: Measuring PROs

18 Patient Centered Outcomes Research Institute 5 year project LOBSTER PROMs Long-term Outcomes of Bariatric Surgical Techniques and their Effect on Related Patient Reported Outcome Metrics Assessed Preop and annually postop.

19 Patient-Reported Outcomes in Metabolic and Bariatric Surgery Metabolic and Bariatric Surgery PROMs Project Conduct focus groups. Implement PROMs nationally. Link PROMs data to MBSAQIP clinical data. Conduct comparative effectiveness of various bariatric procedures. Create a portal for shared decision making.

20 Rank Focus Group 1 Identify Outcomes that Matter Most to Patients Caregivers 1 Health 2 Self-confidence 3 Social/ Interpersonal 4 Mobility 5 Everyday Activities 6 7 Relationship with Food Intimate Relationships 8 Work/School

21 Importance of Quality of Life Domains Ranked by Focus Groups 20 focus groups Facilitated by quantitative experts from Harvard School of Public Health and Brown University. Rank Caregivers Preop Patients Preop Family Postop Patients Postop Family 1 Health Health Health Health Self-confidence 2 Self-confidence Self-confidence Self-confidence Mobility Health 3 Social/Interpersonal Relationship with Food Relationship with Food Everyday Activities Everyday Activities 4 Mobility Mobility Everyday Activities Self-confidence Relationship with Food 5 Everyday Activities Everyday Activities Mobility Social/Interpersonal Social/Interpersonal 6 Relationship with Food Work/School Social/Interpersonal Relationship with Food Mobility 7 Intimate Relationships Intimate Relationships Work/School Intimate Relationships Work/School 8 Work/School Social/Interpersonal Work/School

22 PROMs Considered SF12 & SF36 EQ-5D RAND 12 & RAND 36 PROMIS 10 General Health Measures More than 30 PROMs were considered for inclusion Bariatric and Weight-related Symptom Measures Weight-related Symptom Measure (WRSM) BODY-Q Physical Symptoms Scale Bariatric and Obesity-related Quality of Life Measures Obese Specific Quality of Life questionnaire (OSQOL) Obesity-Related Well-Being scale (ORWELL 97) Bariatric analysis and reporting outcomes system (BAROS) Moorehead-Ardelt Quality of Life Questionnaire II (M-AQoLQII) Impact of Weight on Quality of Life questionnaire (IWQOL) Impact of Weight on Quality of Life Lite (IWQOL-lite) Bariatric Quality of Life Questionnaire (BQL) The Obesity Adjustment Survey-short form (OAS-SF) PROMIS GI Symptom Scales BODY-Q Appearance of Body Scale BODY-Q Satisfaction with parts of body Scales BODY-Q Body image Scale BODY-Q Physical Function Scale BODY-Q Psychological Function Scale BODY-Q Social Function Scale BODY-Q Sexual Function Scale Obesity-related Problems scale (OP) Obesity and weight-loss quality of life instrument (OWLQOL)

23 Focus Group 2 Identify PROMs BODY-Q Physical Symptoms n = 11 WRSM n = 20 BODY-Q Physical Function n = 7 OWLQOL n = 17 BODY-Q Body Image n = 7 BODY-Q Social Function n = 10 OP n = 8 BODY-Q Psychological Function n = 10 BODY-Q Sexual Function n = 5 Health IIIIIIIIIII IIIIIIIIIIIIIIII IIIII Self-confidence I IIII IIIIIII IIIIIIIIII Social/Interpersonal III IIIIIIIIII IIIII Mobility IIIIIII Everyday Activities III II Relationship with Food II Sexual Life I I IIIII Work/School II

24 PROMs Chosen General Health: PROMIS 10 was selected as the general health measure Disease Specific: 1. Obesity-related Problem Scale and 2. the Obesity and Weight-Loss Quality of Life survey were selected as the obesity specific surveys

25 Patient Registration

Patient Email Dear [PATIENT FIRST NAME], As your surgeon, the most important information to me is how you feel about your health and quality of life.

26 Patient Dear [PATIENT FIRST NAME], As your surgeon, the most important information to me is how you feel about your health and quality of life. Until now, we did not systematically collect this information. To improve care for you and others like you, we want to hear about your health and quality of life as they relate to your weight and decision to have bariatric surgery. Not only will your responses be used by your bariatric clinical team to provide you with the best care possible, but they will also be part of a national quality improvement program for all bariatric surgery patients. Please click on the link below and answer the questions about your current health and quality of life. The survey should take less than 10 minutes to complete. Sincerely, Dr. [SURGEON]

27 Score Report After completing the survey patients will see a score report The report can be viewed by their bariatric healthcare team and reviewed with the patient at their clinical follow-up appointment

28 Surgeon Dashboards

29 LOBSTER PROMs Milestones Focus Groups Milestones Goals Identification of outcomes and validated PROMS Alpha Pilot PROM implementation at 5 Partners Hospitals Beta Pilot PROM implementation in a national sample National Rollout PROM implementation at all MBSAQIP centers Analysis Comparative effectiveness of bariatric procedures Data Dissemination Tool Web-based tool to aid in shared decision making

The Right Operation for the Right Patient Tool Patient Name: MRN: MRN: Assessment

19% 0.08% 0.10% 0.5% 0.08% Morbidity 30 days 12.3% 6.2% 3.

Sleeve EWL: 43% EWL: 60 % Surgical Complications: Superficial Infection Leaking Bleeding

lost Estimated Benefit: Resolution of Diseases (1 Year): Bypass Sleeve Band Diabetes 70%

30 The Right Operation for the Right Patient Tool Patient Name: MRN: MRN: Assessment Estimated Risk: Mortality 30 days 1 year Bypass Sleeve Band 0.15% 0.19% 0.08% 0.10% 0.5% 0.08% Morbidity 30 days 12.3% 6.2% 3.1% Estimated Benefit: Reduction in Weight 6 Months 12 Months Bypass EWL:50 % EWL: 70% Sleeve EWL: 43% EWL: 60 % Surgical Complications: Superficial Infection Leaking Bleeding 1% 0.5% 0.8% 0.3% 0.5% 0.3% 0.4% 0.0% 0.1% Readmission 6.9% 3.8% 2.0% Reoperation or Intervention 4.9% 1.9% 1.2% Patient Reported Outcomes: Band EWL: 27% EWL: 36% EWL = your extra weight that is lost Estimated Benefit: Resolution of Diseases (1 Year): Bypass Sleeve Band Diabetes 70% 63% 43% Hypertension 54% 49% 33% Hyperlipidemia 62% 49% 37% Sleep Apnea 65% 59% 53% GERD 47% 15% 55% Obesity Problem OWL-QOL Physical Health Mental Health Overall QOL Sleeve Bypass Sleeve Bypass Sleeve Bypass Sleeve Bypass Sleeve Bypass

31 Summary: Measuring Patient-Reported Outcomes Measures the things that patients care about most. PROs can help assess their goals, manage their expectations, and target QI on areas that matter most to patients. Are more appropriate to measure than morbidity and mortality for lower risk operations. Adds additional domains of health to assess beyond death and destruction : Symptoms, Quality of Life, Health physical, mental etc, Function, Recovery, Satisfaction, Experience. May ease data collection burden and provide long term follow-up. We are eager to learn from these pilots and to roll out PROs nationally in the Quality Programs.

Evidence for Accreditation in Bariatric Surgery Hospitals

Evidence for Accreditation in Bariatric Surgery Hospitals John Morton, MD, MPH, FASMBS, FACS Chief, Bariatric and Minimally Invasive Surgery Stanford School of Medicine President,American Society for Metabolic