Evaluation of Oncology Patient Experiences and …app.ihi.org/.../Oncology_Patient_Survey_Poster__IHI_F.pdfEvaluation of Oncology Patient Experiences and Preferences for Shared ...

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.).