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
ANNUAL MEETING | #PCORI2017 Speakers Name • Dr. Islam has nothing to disclose. • Mrs. Ryan has nothing to disclose. November 2, 2017 2
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
ANNUAL MEETING | #PCORI2017 Learn More • www.pcori.org • info@pcori.org • #PCORI2017 • www.YourURL.url Monirul—add November 2, 2017 20
ANNUAL MEETING | #PCORI2017 Questions? November 2, 2017 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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