a qualitative study to explore willingness to pay for cancer genetic testing among colorectal cancer patients and their relatives

1. EXPLORATION OF WILLINGNESS TO PAY FOR
CANCER GENETIC TESTING AMONG
COLORECTAL CANCER PATIENTS
AND THEIR RELATIVES
Abdul Rahman Ramdzan
P92524
1

2. Introduction
• 2% of elderly aged >50 will eventually develop colorectal cancer in
Western Europe.
• The colorectal cancer is one of the cancer link with genetic as breast
cancer.
• It is the second leading cause of cancer death in the United States
after lung cancer.
• However the death rate from colorectal cancer has been reduced in
recent years due to advancement in screening methods.
2American Cancer Society 2015

3. Colorectal Cancer in Malaysia
• A total of 103,507 new cancer cases
were diagnosed in Malaysia within
the period of 2007- 2011.
• 13,993 cases of colorectal cancer in
Malaysia from 2007-2011 National Cancer Registry, 2007-2011
3

4. Genetic testing
Harmful mutations will increase a person’s
risk of developing a disease such as cancer.
Genetic mutations may have harmful or
neutral effects on health.
Genetic testing looks for mutations in a
person’s chromosomes and genes.
5

5. Type of gene
• Lynch syndrome (hereditary nonpolyposis colorectal cancer)
• Genes: MSH2, MLH1, MSH6, PMS2, EPCAM
• Related cancer types: Colorectal, endometrial, ovarian renal pelvis,
pancreatic, small intestine, liver and biliary tract, stomach, brain, and breast
cancers
• Familial adenomatous polyposis
• Gene: APC
• Related cancer types: Colorectal cancer, multiple non-malignant colon polyps,
and both non-cancerous (benign) and cancerous tumors in the small intestine,
brain, stomach, bone, skin, and other tissues
Genes: MSH2, MLH1, MSH6, PMS2, EPCAM
Related cancer types: Colorectal, endometrial, ovarian, small intestine, stomach and
breast cancers
Gene: APC
Related cancer types: Colorectal cancer, multiple colon polyps, cancerous tumors in the
small intestine and stomach
6
Genetic testing benefit the relatives as a risk screening method, while for the patient
themselves, the test can detect which gene that may lead to other cancer

6. Willingness to pay
7Ilona et al 2011, Rosentock 1974; Strecher and Rosentok 1997, Thomas and Clarke 1998; Vernon 1997
WTP refers to specific amount of money that individuals would
agree to pay for a genetic test as cancer risk assessment.
Cost has been determined as a barrier to the performance of a
behavior of interest in health behavior models.
Studies on cancer screening have consistently found cost to be a
major barrier of colorectal cancer screening.
However, the influence of out-of-pocket costs on individual
perceptions and behaviors has not been studied much.

7. Problem statement
• A rise in colorectal cancer incidence will lead to heavy economic
burden to the health care system.
• Medications, follow-ups and treatment of complications are
contributing factors to the health care cost and patients.
• Despite other screening method has been done but they only
discover in late stage that will lead to death.
• Only few researches look into the screening method of colorectal
cancer such as genetic testing.
8
Arozullah AM, et al., Shih YT, et al.

8. Justification
9
Genetic testing is new in Malaysia and high cost, not many studies have
been conducted to explore the willingness to pay for this test as
compared to the western countries.
Thus, there is a need to explore the willingness of colorectal cancer
patients and their relatives to pay for cancer genetic testing.
Suggest a new screening method that will be useful in detecting
potential new case & reducing complication of colorectal cancer.

9. Objective
10
1. To explore the willingness to pay for cancer genetic testing among
colorectal cancer patients and their relatives
2. To explore the factors contributing to the willingness to pay for the
cancer genetic testing

10. 11
Willingness to Pay for
Genetic Testing of
Colorectal Cancer
Sociodemographic
• Age
• Race
• Gender
Socioeconomic
• Occupation
• Household income
• Level of education
• Acceptance
• Net present value
• Payback period
• Knowledge
• Attitude
• Practice
Conceptual framework

11. Methodology
12
Researchdesign
Qualitative
single case
study
Researchparadigm
Interpretivism
Researchsite
Genetic
Department
of Hospital
Kuala Lumpur
Researchparticipants
Colorectal cancer
patients and their
relatives who will
be undergoing
genetic
counselling
Willing to
participate in the
study
• 6 participants: 3 patients & 3 relatives

12. Research Method
13
In-depthinterview
Type: individual, face-to-
face with open-ended
question
Frequency:
1. The day before genetic
counselling session
2. Immediately after
genetic counselling
session
Instruments: audio-visual
recording, field notes,
semi-structured
questionnaires
Documentanalysis
1. Patients medical
record
2. Physician’s case note
during genetic
counselling session
Observation
Behavior during
genetic
counselling
session

13. Data collection procedures
14
1
• Ethical approval & permission from research site
• Document analysis of participants
2
• First in-depth individual interview
• Participant’s demographic information & willingness to pay for cancer genetic testing
before genetic counselling
3
• Observation during genetic counselling session
• Second in-depth individual interview- Willingness to pay for cancer genetic testing
after genetic counselling
• Data analysis by thematic approach

14. Validity & Reliability
15
Triangulation
3 data collection methods:
interview, observation and
document analysis
2 interviews will be done at
different phases of the data
collection process with the
same participants.
2 type of participants:
patients and their relatives
2 documents will be analysed:
participant’s medical record &
the physician’s case note
during genetic counselling
Memberchecking
Participant validation
will be done in face to
face discussions in
order to verify and
validate the findings.
Externalaudit
Identify an
external auditor
to review the
project and write
or communicate
evaluation of the
study