An Update for Primary Care Physicians: Using Patient-Reported Outcomes to Enable Patient-Centered Prostate Cancer Care

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1 An Update for Primary Care Physicians: Using Patient-Reported Outcomes to Enable Patient-Centered Prostate Cancer Care Peter Chang, MD AUA Foundation Research Scholar Urologic Oncology, Prostate Cancer Care Center Beth Israel Deaconess Medical Center Harvard Medical School Massachusetts Prostate Cancer Coalition Annual Symposium Friday, May 16, 2014, 7:30 am

2 Overview What is Patient- Centered Prostate Cancer Care? Prostate Cancer and Health- Related Quality of Life Patient- Reported Outcomes EPIC for Clinical Practice So what? Applications to improve Patient- Centered Care Conclusion

3 What is Patient-Centered Prostate Cancer Care? Care that revolves around the patient, rather than physician Individualized care vs cookie cutter care Effective communication about the patient perspective Giving patients a voice patient empowerment Recognizes patients values, preferences, cultural traditions

4 Prostate Cancer and Health-Related Quality of Life (HRQOL) Quality of life issues central to prostate cancer controversy Most prostate cancers grow slowly Treatments hurt quality of life, often permanently That s the way it is = unacceptable Physicians responsibility to identify and alleviate problems

5 Physician/Practitioner-Reported Outcomes Physician-reported outcomes! We take a history! We use patient responses to make professional assessment or judgment of the patient s condition! The patient is doing very well from a urinary standpoint! The patient has no issues with sexual function! His recovery is progressing as expected

6 What are Patient-Reported Outcomes? PRO: a questionnaire used in a clinical trial or in a clinical setting where the responses are collected directly from the patient! The patient provides the information! Questionnaires or interviews* Interviewer is gaining and documenting patient s view based on set questions, not interpreting and assessing patient s views

7 Why should PROs be used in clinical practice? Sexual function: % of patients that had erections ^irm enough for intercourse in the month preceding interview! Fowler et al: 10%! Most recent review of literature at the time: 40% Urinary function: % of patients that reported problems with leakage/wetness! Fowler et al: 60%! Literature review: 27%

8 Physicians tend to underestimate patient s symptoms Sonn GA, Sadetsky N, Presti JC et al: Differing perceptions of quality of life in patients with prostate cancer and their doctors. J Urol 2009; 182: 2296.

9 Physicians want to hear good things Practitioner (sits down): So, it s been about a year [since surgery]. Things should be looking up for you at this point. How s the recovery going? Patient: Pretty good, I guess. Practitioner: How many pads are using in a day? Patient: Oh, one to two. Practitioner: Mainly for protection, right? Just in case? Patient: Well, for protection, for sure Practitioner: Great. How about sex? Getting back into the swing of things? Patient: It s dif^icult, but we manage. Practitioner: Manage to be sexually active, you mean? Patient: In our own way, yes, however we can. Practitioner: Perfect. [Turns to me] He s doing great. [Documents Pad only for protection. Sexually active without medications. ]

10 Why are PROs NOT often used in clinical practice? Lack of practitioner buy- in Time* Don t know what to do with the information Logistics/work^low Patient identi^ication avoiding the oops Mode of administration Documentation Many other barriers

11 Patient-Reported Outcomes and Prostate Cancer Multi-center study (9 academic centers) 1201 patients (603 RP, 292 XRT, 306 BT) & 625 spouses Measured QOL using EPIC-26 at pre-treatment; then 2, 6 mos & yearly thereafter Patient interviews BIDMC Pt Med Records Spouse Interviews

12 September 21, 2011

13 Research Realm Group of Patients Pre-Treatment QOL Assessment Treatment Post-Treatment QOL Assessment Identify Pre-treatment Factors that can Predict Post-treatment Outcome Identify Treatment Effects? Clinical Realm Adjust Patient Expectations Individual Patient Pre-Treatment QOL Assessment Shared Medical Decisionmaking Recommend Appropriate Management Management Decision Clinician Self- Assessment Post-Treatment QOL Assessment Manage QOL Changes Improved Patient Outcome Increased Patient Satisfaction

14 EPIC for Clinical Practice (EPIC-CP) Validation: Chang P et al J Urol Sep 2011 " GOAL: Clinical usefulness and usability " TARGET POPULATION: Any patient with prostate cancer " LENGTH: 1 page, 16 questions " COMPLETION TIME: < 5 minutes " SCORING: Similar to AUA-SI/IPSS " CONTENT: Retains critical domains of prostate cancer HRQOL Overall urinary bother Urinary incontinence Urinary irritation/obstruction Bowel/Rectal Sexual Vitality/Hormonal " RELIABILITY: High internal consistency (Cronbach s alpha > 0.7) " AVAILABILITY: Publicly available for download: Free full text article through Pubmed

15 Improving EPIC-CP Clinical Interpretation and Application Chipman J et al J Urol Mar 2014 and unpublished data EPIC- CP is responsive to HRQOL changes over time Validates use in follow- up setting Minimally Important Differences (MID) Sexual Prediction Model Adaptation Domain Pre- treatment EPIC- CP Sexual score predicts outcome MID U. Incontinence 1.0 ( ) U. Irritation/Obstruction 1.3 ( ) Bowel 1.2 ( ) Sexual 1.6 ( ) Vitality/Hormonal 1.0 ( ) Planned surgical technique Age Pretreatment PSA Predicted Probability of Having Functional Erections 2-years After Treatment (by Pretreatment Sexual Score)* a) EPIC-CP b) EPIC Nerve sparing > > >

16 So what? There s nothing sexy about a questionnaire Represents a new phase: clinical translation of research efforts in Prostate Cancer QOL Patient perspective (whether you like it or not) Makes clinical visit more ef^icient and focused on the issues that are most important to the patient

17 Applications: The Post-Treatment Follow-Up Setting Administer EPIC- CP at each follow- up visit Address and manage QOL issues Reassurance Medication Procedure Referral Clinician Self- Assessment/Quality Improvement Management Decision Clinician Self- Assessment Post-Treatment QOL Assessment Manage QOL Changes Improved Patient Outcome Increased Patient Satisfaction

18 Real-world use of EPIC-CP in non-research, clinical practice setting 202 patients who underwent Robotic Prostatectomy at BIDMC 389 EPIC- CP questionnaires completed Pad use and functional erection rates equivalent to Sanda et al NEJM Signi^icant discrepancy in clinician- reported and patient- reported functional erection rates at 12 months (56% vs 28%)

19 Applications: The Pre-Treatment Setting Pre- treatment QOL is the most important factor in determinining post- treatment sexual and urinary QOL Misaligned patient expectations - > decreased satisfaction Apply tools to predict outcomes Recommend Appropriate Management Adjust Patient Expectations Adjust Patient Expectations Individual Patient Pre-Treatment QOL Assessment Shared Medical Decisionmaking Management Decision Recommend Appropriate Management

20 Using PROs to further empower patients: The Post-Treatment Setting Cannot depend on all practitioners to address patients needs Electronic Self-report Assessment Cancer (ESRA-C) Developed by Donna Berry, RN, PhD Online tool that patients self- administers Uses PROs to identify common QOL problems Offers self- help remedies that can be done at home Encourages and coaches patients how to discuss their individual issues with their practitioners System in development and testing

21 Using PROs in Shared Medical Decision-making Prostate cancer is unique: there are many choices One treatment decision, but many personal patient factors What is most important to me (cancer control, sexual, urinary)? Who in^luences me the most in the decision- making process? What role do I want the doctor to play in the process? Personal Patient Pro[ile Prostate (P3P) Also developed by Donna Berry, RN, PhD NIH- funded randomized trial currently ongoing at BIDMC Web- based intervention that gathers patient information (including using PROs), and customizes output to individual Coaches patients how to talk to their doctor about the above factors Shown to decrease symptom distress, increase patient satisfaction

22 P3P Digital EPIC-CP adaptation and administration

23 P3P Clinician Report Delivery System

24 Patient-Centered Prostate Cancer Care Care that revolves around the patient, rather than physician Individualized care vs cookie cutter care Effective communication about the patient perspective Giving patients a voice patient empowerment Recognizes patients values, preferences, cultural traditions

25 Why are PROs NOT often used in clinical practice? Lack of practitioner buy- in Time* Don t know what to do with the information Logistics/work^low Patient identi^ication avoiding the oops Mode of administration Documentation Many other barriers

26 Conclusions Patient- Reported Outcomes represent the patient perspective, and give patients an important voice in the clinical encounter New developments in prostate cancer PROs (EPIC- CP) enable translation of the research realm into the clinical realm Use of PROs in clinical practice makes care more patient- centered, and may improve the quality of care PRO use not limited to specialty every prostate cancer patient should be evaluated To download EPIC- CP, visit:

27 Acknowledgements Prostate Cancer Patients Mark Kennedy, MPCC UrologyCare Foundation and the Research Scholars Program and Dornier Medtech Drs. Martin Sanda, Andrew Wagner, and Donna Berry Jonathan Chipman, MS, and Meredith Regan, ScD, DFCI Catrina Crociani, Clinical Trials Specialist, BIDMC