evaluation of oncology patient experiences and...
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Disclosures and References
Research Hypothesis
Background
Methodology
Special Thanks
Evaluation of Oncology Patient
Experiences and Preferences for Shared
Decision Making and Patient-Centered Care
Elaina Vivian, MPH; Atisha Manhas, MD; Parvez Mantry, MD; Andrea Lee, RN; Candice
Deluna, RN; Hellen Oduor, MPH; Allison Vo, RN, MHA; Anjee Davis, MPPA;
and Sharyn Worrall
M E T H O D I S T D A L L A S M E D I C A L C E N T E R , D A L L A S , T E X A S
We hypothesize that patients will rank
interventions and activities associated with
increased participation in Shared Decision
Making (SDM) and patient-centered care
planning highly on a scale of importance.
Research Study Dates
June 16, 2017 – August 11, 2017 (8 weeks)
Shared Decision Making (SDM) is defined as a
collaborative process where patients and
members of their clinical team work together to
make healthcare decisions informed by scientific
evidence as well as patients’ own values and
preferences. Essential elements of SDM include:
“defining the problem; discussing available
treatment options; discussing risks and benefits of
options; understanding patient values and
preferences; discussing the patient’s clinical
condition and making a recommendation; checking
patient understanding; and providing an
opportunity to defer the decision.” Evidence
suggests that SDM is positively associated with
improved patient satisfaction, reduced decisional
conflict and improved behavioral and physical
health outcomes; among other things.
The treatment of cancer is a crucial field for the
study of decision making; the stakes for treatment
are often life and death, and when there are
multiple treatment options to consider, the
importance of SDM is elevated that much more.
Research has identified numerous obstacles to
SDM in practice, including variable and often
suboptimal communication (between the patient
and healthcare provider) that may not be culturally
or personally appropriate, and information
overload for the patient and family without
appropriate written documentation of treatment
plans, options, and expectations that the patient
and family might refer to after a visit.
The stress of a potentially life-threatening
cancer diagnosis impairs both learning and
memory. Patients in a stress state are less likely to
understand information presented, remember risks
and/or guidelines for treatment, advocate for their
personal preferences, take an active role in
treatment planning, and adhere to treatment
decisions. Consequently, patients experience
increased distress and are more likely to take on a
‘doctor knows best’ type attitude, relying on their
healthcare providers to inform treatment decisions
rather than being an active part of the planning
process. Patients who are not able to advocate for
their personal needs and preferences are left
vulnerable to an imperfect healthcare system.
• Texas Oncology Methodist Dallas: Cheryl Sampson, Tracy Messing, Deb Jimerson, Julie Smith, Stacie Harris, and Clinic Staff
• Liver Institute Methodist Dallas: Jennifer McRae, Ricole Brooks, Doris Spearmon-Dozier, Miya McClary, and Clinic Staff
• Fight Colorectal Cancer: Research Advocacy Training and Support (RATS) program participants, Danielle Burgess
1. Bouniols N, Leclère B, Moret L. Evaluating the quality of shared decision making during the patient-carer encounter: a systematic review of tools. BMC Research Notes. 2016;9(1). 2. Kashaf MS, Mcgill E. Does Shared Decision Making in Cancer
Treatment Improve Quality of Life? A Systematic Literature Review. Medical . Decision Making. 2015;35(8):1037-1048. 3. Wallace JE, Lemaire JB, Ghali WA. Physician wellness: a missing quality indicator. The Lancet. 2009;374(9702):1714-1721.
4. Patlak, M., Balogh, E., and Nass, S. 2011. Patient-Centered Cancer Treatment Planning: Improving the Quality of Oncology Care. Institute of Medicine. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3248780/ 5. Psychological Stress and Cancer.
National Cancer Institute. https://www.cancer.gov/about-cancer/coping/feelings/stress-fact-sheet. Accessed July 18, 2017. 6. "Patient-Centered Cancer Treatment Planning: Improving the Quality of Oncology Care: Workshop Summary" at NAP.edu.
National Academies Press: OpenBook. https://www.nap.edu/read/13155/chapter/2. Accessed July 18, 2017.
The survey instrument was developed by study researchers based on an extensive
literature review, direct patient feedback (i.e. MDMC Pancreatic Cancer Support Group and
FightCRC’s Research Advocacy Training and Support (RATS) program), and oncology nurse
and multidisciplinary physician input
The survey instrument was translated to Spanish to cater to patient demographics
Developed multiple modalities through which oncology patients and caregivers could
complete the survey (i.e. paper copies in clinic locations or mailed in, or completed online via
survey platform (i.e. Qualtrics)
The study protocol and survey instrument was submitted to IRB for approval (Protocol
Number 015.HEP.2017.D). Survey launched June, 2017
Clinical stakeholders from Methodist Dallas Medical Center (MDMC) inpatient floors, the
Liver Institute, and Texas Oncology were engaged to develop work plans for survey
dissemination
Descriptive statistics were analyzed using SAS software. We conducted Spearman rank correlations to test associations between
certain variables
Limitations
Next Steps
• The results represent a majority of patients
coming from Texas Oncology clinics.
• A large percentage (>85%) of patients
ranked 8/9 essential elements of SDM as
important or very important. However,
preferences for clinical trial information
varied across the scale
• Oncology patients preferences for SDM
largely and positively aligned with their
experiences with SDM (rho=.652, p<.0001)
• Many patients feel stress impacts
communication with their healthcare provider
and that the healthcare system should offer
stress-management support. However, only
17% of respondents reported receiving
stress management resources
• Understanding stress affects communication
on the part of providers and patients; we will
conduct a survey of nurses and physicians
on sources of stress and factors that impact
stress regulation (i.e. mindfulness, self-
regulation, and self-care)
• Develop and pilot mindfulness-based stress
reduction interventions for oncology patients
and providers
Conclusions
Background
Results (N=76)
Male 52%
Female 48%
Sex
It is important to me that: 1 = Very
important
2 =
Important
3= Somewhat
Important
4= Not
Important
My physician clearly explains my cancer, such as my chance of cure, relapse, and
survival 87.5% 6.9% 4.2% 1.4%
My physician asks me about my preferences for treatment 68.1% 25.0% 5.6% 1.4%
My personal beliefs/values match my treatment choice 62.5% 22.2% 12.5% 2.8%
I am presented with different treatment options (including the option of doing
nothing) 62.3% 27.5% 7.2% 2.9%
I am presented with information about clinical trials 43.4% 27.5% 15.9% 13.0%
I know the benefits, risks and side effects of each treatment option before I choose
a treatment 77.8% 19.4% 2.8% 0.0%
My family/friends support my treatment decision 69.4% 23.6% 5.6% 1.4%
I feel confident in my treatment choice 79.2% 16.7% 4.2% 0.0%
I feel comfortable changing my treatment choice if I need to 70.8% 20.8% 4.2% 4.2%
Facets of SDM: Survey participants were asked 10 questions about how important
elements of shared decision making were to them.
Experiences and Preferences for SDM: Survey participants were asked about their
preferences for SDM in treatment choice as well as their experiences with SDM in
treatment choice.
Facets of Stress and Stress-Management Support: Survey participants were asked
questions regarding stress and communication and stress management support.
Patients’ Comments
We asked patients to tell us what were some of their
greatest sources of stress during the cancer journey:
• “As a patient, I feel that there have been one too many
instances where all my physicians failed to keep one
another up to date with my treatment.”
• “Initially fear. Then stress from several side effects and
depression and anxiety. Finances worries are also a
problem too.”
• “Lots of anxiety, sometimes depressed and stressed”
• “Emotional factors – burden on my family”
• “The first thing I thought of was how am I going to pay
for all of this. My family came to mind and especially
thinking I am going to die. It was something very
difficult for me and my family.”
2.7
18.9
28.4
17.6
31.1
0
5
10
15
20
25
30
35
18-29 30-49 50-64 65-69 70+
Per
cen
t (%
)
Age
54.1
17.6
10.8 12.2
2.7
0
10
20
30
40
50
60
Married Single Divorced Widowed Separated
Per
cen
t (%
)
Marital Status
< HS 14%
HS diploma 37%
Trade school 14%
College degree 22%
Postgraduate degree
13%
Education
68.5%
6.8%
17.8%
Treatment Status
Active Tx Yet to Start Tx Completed Tx
19.4
25.4
9
11.9
9
23.9
0
5
10
15
20
25
30
Per
cen
t (%
)
Cancer Type
43.9
22.7
10.6
15.1
9.1
37.3
25.3
13.4
13.4
6
4.5
0 5 10 15 20 25 30 35 40 45 50
Doctor and patient share responsibility for choosing whichtreatment is best
Doctor makes the final choice but seriously considers patient’s opinion or the opinion of patients’ family
Leave all choices regarding treatment to doctor
Make the final choice after seriously considering doctor’s opinion
Make the final choice of treatment alone
Patient was not asked for their opinion regarding treatment
Percent (%)
Patients' Experience
Patients' Preference
Rho=.652, p<.0001
50.8
23.1 26.1
0
10
20
30
40
50
60
Very Strongly orStrongly
Somewhat Strongly Not Strongly
Pe
rce
nt
(%)
How strongly do you feel stress impacts communication (e.g. between you and your doctor, or between you and your caregiver)?
67.7
9.2
23.1
0
10
20
30
40
50
60
70
80
Yes No I don't know
Per
cen
t (%
)
Do you feel it is important for the healthcare system to offer sress-
management support?
16.9
83.1
0 10 20 30 40 50 60 70 80 90
Received
Did not receive
Percent (%)
Did Patients Receive Information about Stress Management?
Next Steps
AIM Statement
Over an eight week period, survey at least 50
oncology patients regarding their preferences
and experiences with SDM, patient-centered
care activities, stress, and outcomes of
interests (e.g. quality of life, survival, financial
impact of treatment, decisional conflict, etc.).