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ANNUAL OCT. 31-NOV. 2, 2017 MEETING ARLINGTON, VA Patient-Defined Treatment Success and Preferences in Advanced Stage Lung Cancer KM Monirul Islam, MBBS/MD, PhD Associate Professor of Epidemiology June Ryan, BS, MPA Patient Advocate


  1. ANNUAL OCT. 31-NOV. 2, 2017 MEETING ARLINGTON, VA Patient-Defined Treatment Success and Preferences in Advanced Stage Lung Cancer KM Monirul Islam, MBBS/MD, PhD Associate Professor of Epidemiology June Ryan, BS, MPA Patient Advocate University of Nebraska Medical Center #PCORI2017 November 2, 2017

  2. ANNUAL MEETING | #PCORI2017 Speakers Name • Dr. Islam has nothing to disclose. • Mrs. Ryan has nothing to disclose. November 2, 2017 2

  3. ANNUAL MEETING | #PCORI2017 Objectives  Objective 1: Determine if patients’ characteristics and treatment experiences affect their definition (meaning ) of treatment success. • Objective 2: Determine patient’s treatment choices based on their ranking of unwanted drug side effects. • Objective 3: Determine whether oncologists are likely to change their chemotherapy treatment strategy when provided with information related to patient preferences. November 2, 2017 3

  4. ANNUAL MEETING | #PCORI2017 Background--Lung Cancer  Lung cancer is the leading cause of cancer deaths.  Most newly diagnosed patients are elderly.  50% of patients die within one year of diagnosis. November 2, 2017 4

  5. ANNUAL MEETING | #PCORI2017 Background- Lung Cancer  Patients’ preferences regarding treatment adverse events are not systematically considered when choosing a treatment for advanced stage NSCLC.  There is no clinical guide for patients or physicians on how to integrate patient’s preferences of adverse events in treatment decisions. November 2, 2017 5

  6. ANNUAL MEETING | #PCORI2017 Scope of issues faced by patients  Patients often are not prepared for the effect that advanced lung cancer will have on family dynamics as well as relationships with friends and co-workers.  Our project addresses these and other issues by asking patients questions about preferred side effects of chemotherapy treatment. November 2, 2017 6

  7. ANNUAL MEETING | #PCORI2017 Long-term Goal • The long term goal of our study was to facilitate patients’ treatment choices for advanced stage lung cancer. November 2, 2017 7

  8. ANNUAL MEETING | #PCORI2017 Study Design and Participants  We conducted a multi-center prospective longitudinal patient- centered outcomes study-  Prospective cohort, and  randomized intervention study  We recruited 235 patients diagnosed with primary, advanced stage, non-small cell lung cancer (NSCLC) for the prospective cohort study  Twenty two oncologists for the randomizes intervention part of the study November 2, 2017 8

  9. ANNUAL MEETING | #PCORI2017 Specific Aim 1: Patients’ Definition of Treatment Success • We utilized a prospective cohort study to evaluate patient-centered definition of treatment “success”, its relationship to patient characteristics, and changes after treatment. November 2, 2017 9

  10. ANNUAL MEETING | #PCORI2017 Patient Characteristics  We recruited 235 patients; average age was 68 years.  Participants were predominantly White (95.3%) and more rural (34%) than the US in general.  A higher proportion of males (55.3%) than females. November 2, 2017 10

  11. ANNUAL MEETING | #PCORI2017 Patients’ Definition of Treatment Success Variable Category n=235 % Treatment success definition Living longer (LL)/survival alone 28 11.9 at patient’s FIRST interview LL with other answers 142 60.4 Quality of life (QoL) without LL 54 23.0 Undecided/Unclear/Not 11 4.7 Reported (NR) November 2, 2017 11

  12. ANNUAL MEETING | #PCORI2017 Patients’ Definition of Treatment Success  At the first interview, a majority of patients defined treatment success as more than survival alone (60.4%).  Treatment success was defined by 23% as simply a good QoL.  Less than 12% considered survival alone as their definition of treatment success.  Patients wished to live longer with a good quality of life (QoL) and/or have time with family and friends and/or reach personal goals. November 2, 2017 12

  13. ANNUAL MEETING | #PCORI2017 Changes in Definition of Treatment Success Table 1. Patient’s definition of treatment success changed between first and last interview Variable Category n=235 % Changes in treatment success Changed 79 47.0 definition – between FIRST & No change 89 53.0 LAST interviews November 2, 2017 14

  14. ANNUAL MEETING | #PCORI2017 Changes in Definition of Treatment Success  Of those patients who at first interview defined treatment success as survival alone, 80% changed their definition to either more than just survival or switched to improved QoL only at their last interview.  Among patients who first gave ‘survival alone’ as their treatment success definition, 52.4% changed into living longer plus other goals, and 23.8% changed into improved QoL only.  These findings highlight the importance of QoL for patients and do not diminish their desire to live longer. November 2, 2017 15

  15. ANNUAL MEETING | #PCORI2017 Specific aim 2: Tolerance to Side Effects Table 2. Proportion of patients who ranked the listed side effect as the one they would most like to avoid at their FIRST* and LAST interviews (n=168)* FIRST LAST Interview% Worst ranked side effect Interview% shortness of breath 28.7 20.8 bleeding 20.9 14.3 fatigue 11.9 25.6 dizziness 10.8 10.7 a lot more expensive 8.4 9.5 jaundice 8.4 7.7 more trips to clinic for treatment 7.2 7.1 numbness/tingling 1.8 1.2 1.8 2.9 brittle nails November 2, 2017 16

  16. ANNUAL MEETING | #PCORI2017 Specific aim 2: Tolerance to Side Effects  The three side effects that patients would most like to avoid were stable between first and last interviews, i.e., shortness of breath, bleeding, and fatigue.  In the last interview the order changed to fatigue, shortness of breath, and bleeding. November 2, 2017 17

  17. ANNUAL MEETING | #PCORI2017 Specific aim 3: Oncologists are likely to change their treatment plan • We recruited 22 oncologists and administered a questionnaire about chemotherapy treatment using control and intervention groups. • All oncologists in the intervention group adjusted their recommended treatment after receiving actionable patient preferences, while 62.5% of those in the control group changed their recommended treatment. November 2, 2017 18

  18. ANNUAL MEETING | #PCORI2017 Study Results : Significance • Patients can successfully play active, engaged roles in their own treatment which may lead to improved outcomes and a higher degree of satisfaction. • Patients and clinicians may not share the same view of treatment success. • Patients have clear preferences for side effects they will tolerate; these preferences may change with the treatment experience. November 2, 2017 19

  19. ANNUAL MEETING | #PCORI2017 Learn More • www.pcori.org • info@pcori.org • #PCORI2017 • www.YourURL.url Monirul—add November 2, 2017 20

  20. ANNUAL MEETING | #PCORI2017 Questions? November 2, 2017 21

  21. ANNUAL MEETING | #PCORI2017 Thank You! KM Monirul Islam, MBBS/MD, PhD Associate Professor of Epidemiology University of Nebraska Medical Center kmislam@unmc.edu Twitter handle June Ryan, BS, MPA Patient Advocate University of Nebraska Medical Center juneryan71@gmail.com November 2, 2017 22

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