Understanding pathways to bowel cancer early diagnosis and treatment

1. Have you been invited to complete this survey before?

Yes, I have already been invited to complete this survey before
No

2. Do you agree to complete the survey?

Yes I will complete the survey
No, I do not want to participate in this study

2a) Study ID

Please enter your study ID number. Your ID number can be found in the bottom left-hand corner of the survey posted to you.

Thank you for considering this request. To ensure that you are not contacted again about this research study, please enter your study ID number. Your ID number can be found in the bottom left-hand corner of the survey posted to you.

3. Who is completing this survey? (optional)

I am the person the survey was addressed to
I am a friend or relative of the person the survey was addressed to

EVENTS TO DIAGNOSIS

4. Which of the following best describes the events which led to your diagnosis of cancer? (optional)

I had symptoms/I noticed a bodily change and went to see a doctor (e.g. GP)
I had symptoms/I noticed a bodily change and went/was taken to the emergency department
I had seen a doctor with symptoms, but went/was taken to the emergency department when things worsened.
I was being investigated for another health problem during which time the cancer was discovered.
I had a cancer screening* test as part of the government’s bowel cancer screening program.
I had a cancer screening* or surveillance* test organised by my doctor.
Other

What was the health problem being investigated? (optional)

What date did you have this screening test? (optional)

If you cannot remember the exact date, you can fill in an approximate date.

What date did you have this screening or surveillance test? (optional)

If you cannot remember the exact date, you can fill in an approximate date.

Other, please specify (optional)

Note:

Bowel cancer screening is looking for signs of a bowel cancer in healthy people who do not have symptoms. Screening for bowel cancer often involves a faecal occult blood test (FOBT). This is a test that involves taking small samples of your bowel motions at home and sending them to a laboratory for testing. This test may have been offered to you through the government’s bowel cancer screening program.

Alternatively, you may be sent for a screening test by your GP/other doctor, such as for a colonoscopy or sigmoidoscopy. For example, you may have regular surveillance colonoscopies due to having a previous polyp, family history of bowel cancer, or an inherited syndrome like Lynch syndrome or Familial Adenomatous Polyposis (FAP).

BEFORE YOUR DIAGNOSIS

5. Below is a list of some health concerns or symptoms commonly experienced by people diagnosed with bowel cancer.

Please write down all health concerns or symptoms you had before contacting a doctor, including if you were being investigated for another problem. Include any symptoms or concerns from this list, as well as any other symptoms you had.

Rectal bleeding or blood in stools (poo)
Change in bowel habit (e.g. experiencing constipation or diarrhoea)
Unexplained tiredness/fatigue
Unexplained weight loss
Pelvic or abdominal pain
Skin went yellow
Abdominal distension / increased abdominal size / persistent bloating

Please write your health concern(s) or symptom(s) (optional)

I did not have any symptoms or health concerns (optional)

6. Please write down your best estimate of the date you noticed the first of these health concern(s) or symptom(s). (optional)

Please write down your best estimate of the date or if you cannot remember the exact date, you can fill in an approximate date.

This is not applicable to me (e.g. I had no symptoms) (optional)

7. What was the first symptom that made you think something might be wrong? (optional)

I did not have any symptoms or signs (optional)

Health concerns or symptoms before contacting a doctor

8. For approximately how long did you have health concerns or symptoms before contacting a doctor? Please think of the first visit to the doctor, not re-visits after that.

If you were being investigated for another problem, please think about how long you had the symptoms or concerns that led to these investigations.

Health concerns or symptoms before contacting a doctor - Options (optional)

9. If you had the symptom or concern for more than 2 weeks before you contacted a doctor, what were the main reasons for not contacting a doctor earlier? (optional)

10. Once you contacted a doctor about your health concern(s) or symptom(s), how long did it take to get an appointment? (optional)

Please think of the first visit to the doctor to discuss your concern/symptom.

11. What do you think about the waiting time to get an appointment with a doctor? (optional)

Please think of the first visit to the doctor to discuss your concern(s) or symptom(s).

Too long
Appropriate
Too short
Don't know / not applicable

12. What was the date of your first appointment with a doctor (e.g. GP) about your health concern(s) or symptom(s)? (optional)

If you cannot remember the exact date, you can fill in an approximate date.

This is not applicable to me (e.g. I had no symptoms) (optional)

12 a) Was this appointment in person, by phone or by video? (optional)

In person
Phone
Video

13. On the first visit with this doctor, did the doctor (tick all that apply) (optional)

Please specify the medication that was prescribed (optional)

Other, please specify (optional)

14. How many times did you visit each of the following for the investigation of your health concern(s) or symptom(s) (or to investigate another problem) before your cancer was diagnosed?

Please write ‘0’ if you had no visits.

GP (optional)

Gastroenterologist (optional)

Other specialist outside of a hospital (optional)

Other doctor/specialist at a hospital (e.g. outpatient clinic) (optional)

Hospital emergency department (optional)

Other doctor (please specify doctor and visits) (optional)

This is not applicable to me (optional)

15. After your doctor referred you to a specialist or hospital outpatient clinic, how long did it take you to get an appointment? (optional)

Please specify reason the above is not applicable (optional)

E.g. went straight to emergency department

16. What do you think about the waiting time to get an appointment with a specialist or hospital outpatient clinic? (optional)

Too long
Appropriate
Too short
Don't know / not applicable

17. What was the date of your first appointment with a doctor, involved in investigating and/or treating your cancer, to whom you were referred? (optional)

If you cannot remember the exact date, you can fill in an approximate date.

17 a) Was this appointment in person, by phone or by video? (optional)

In person
Phone
Video

18. Who told you the result of the test that showed that you definitely had cancer? (optional)

Sometimes people will have several tests before a diagnosis of cancer is given. A doctor may need to take a sample of tissue, called a biopsy, or perform surgery, in order to make a definitive diagnosis.

Other, please specify (optional)

19. What was the date you were told you had cancer? (optional)

If you cannot remember the exact date, you can fill in an approximate date.

19 a) Were you told you had cancer in person, by phone or by video? (optional)

In person
Phone
Video

20. Was the discussion about your diagnosis conducted in a sensitive and supportive way? (optional)

21. What do you think about the waiting time from your first appointment with a specialist or hospital outpatient clinic to being diagnosed? (optional)

Too long
Appropriate
Too short
Don't know / not applicable

22. Do you think your cancer could have been diagnosed sooner? (optional)

Yes
Possibly
No

22 a) If yes or possibly, why do you think your cancer could have been diagnosed sooner? (optional)

23. Do you have any other comments about the time leading up to your diagnosis? (optional)

Tests you had

Please answer the following questions about any tests you had, who ordered them and when you got the results.

24. a) Did you have a stool or poo test (FOBT)? (optional)

For this test, please think about the period of time after first seeing a doctor but before being told you had cancer.

A stool or poo test, also called a faecal occult blood test (FOBT), involves taking small samples of your bowel motions at home and sending them to a laboratory for testing.

b) Who was the doctor that ordered a stool or poo test (FOBT) the first time? (optional)

The GP
Emergency department staff of a hospital
Specialist doctor / doctor at a hospital
Other

Other, please specify (e.g. poo test through government screening program) (optional)

c) After the test was ordered (or received in the post), how long was it until you completed the stool or poo test (FOBT)? (optional)

If you have had the test more than once, think about the first time you had the test

d) After you completed the test, when did you get the result of the stool or poo test (FOBT)? (optional)

For the following questions, please think about any tests you had before you were told you had cancer and up to starting treatment.

25. a) Did you have a colonoscopy? (optional)

A flexible lighted tube is inserted into the anus in order to look at the whole of the large bowel. You would have had a sedative or anaesthetic to have the test and you would have had a bowel preparation to clean out the bowels before you had the test.

b) Who was the doctor that referred you for a colonoscopy the first time? (optional)

The GP
Emergency department staff of a hospital
Specialist doctor / doctor at a hospital

c) Did you have the colonoscopy in the public or private health care system? (optional)

If you have had the test more than once, think about the first time you had the test

Public system
Private system

d) After you were referred, how long did you wait to have the colonoscopy? (optional)

e) What date was your first appointment with a colonoscopy specialist/clinic to discuss having your colonoscopy? (optional)

f) What date was your first colonoscopy? (optional)

g) When did you get the result of the colonoscopy? (optional)

26. a) Did you have a CT scan of the chest, abdomen and/or pelvis? (optional)

A computerised tomography (CT) scan is a type of x-ray that gives a picture of organs or other structures including tumours or cancers. You would have had a liquid dye before the scan, in a drink and/or in an injection. You would have been lying on a table that moves slowly through the CT scanner.

b) Who was the doctor that referred you for a CT scan the first time? (optional)

The GP
Emergency department staff of a hospital
Specialist doctor / doctor at a hospital

c) Did you have the CT scan in the public or private health care system? (optional)

If you have had the test more than once, think about the first time you had the test

Public system
Private system

d) After you were referred, how long did you wait to have the CT scan? (optional)

e) What date was your first CT scan? (optional)

f) When did you get the result of the CT scan? (optional)

27. a) Did you have a MRI? (optional)

A Magnetic Resonance Imaging (MRI) uses magnetism to build up pictures of your organs. To have an MRI you would lie down on a table inside a large metal tube that is open at both ends.

b) Who was the doctor that referred you for a MRI the first time? (optional)

The GP
Emergency department staff of a hospital
Specialist doctor / doctor at a hospital

c) Did you have the MRI in the public or private health care system? (optional)

If you have had the test more than once, think about the first time you had the test

Public system
Private system

d) After you were referred, how long did you wait to have the MRI? (optional)

e) What date was your first MRI? (optional)

f) When did you get the result of the MRI? (optional)

28. a) Did you have a PET (Positron Emission Tomography) scan? (optional)

Before a PET scan you would have been given a small injection of radioactive material. The scanner has a ring of detectors that surround the patient, and looks similar to a CT scanner. Imaging generally takes around 30 minutes.

b) Who was the doctor that referred you for a PET scan the first time? (optional)

The GP
Emergency department staff of a hospital
Specialist doctor / doctor at a hospital

c) Did you have the PET scan in the public or private health care system? (optional)

If you have had the test more than once, think about the first time you had the test

Public system
Private system

d) After you were referred, how long did you wait to have the PET scan? (optional)

e) What date was your first PET scan? (optional)

f) When did you get the result of the PET scan? (optional)

29. Did you have any other tests before you were told you had cancer and up to starting treatment? (optional)

Yes
No

1. a) What was the test? (optional)

b) Who was the doctor that ordered this test for you the first time? (optional)

The GP
Emergency department staff of a hospital
Specialist doctor / doctor at a hospital

c) Did you have this test in the public or private health care system? (optional)

If you have had the test more than once, think about the first time you had the test

Public system
Private system

d) What date was your first time having this test? (optional)

2. a) What was the test? (optional)

b) Who was the doctor that ordered this test for you the first time? (optional)

The GP
Emergency department staff of a hospital
Specialist doctor / doctor at a hospital

c) Did you have this test in the public or private health care system? (optional)

If you have had the test more than once, think about the first time you had the test

Public system
Private system

d) What date was your first time having this test? (optional)

3. a) What was the test? (optional)

b) Who was the doctor that ordered this test for you the first time? (optional)

The GP
Emergency department staff of a hospital
Specialist doctor / doctor at a hospital

c) Did you have this test in the public or private health care system? (optional)

If you have had the test more than once, think about the first time you had the test

Public system
Private system

d) What date was your first time having this test? (optional)

4. a) What was the test? (optional)

b) Who was the doctor that ordered this test for you the first time? (optional)

The GP
Emergency department staff of a hospital
Specialist doctor / doctor at a hospital

c) Did you have this test in the public or private health care system? (optional)

If you have had the test more than once, think about the first time you had the test

Public system
Private system

d) What date was your first time having this test? (optional)

5. a) What was the test? (optional)

b) Who was the doctor that ordered this test for you the first time? (optional)

The GP
Emergency department staff of a hospital
Specialist doctor / doctor at a hospital

c) Did you have this test in the public or private health care system? (optional)

If you have had the test more than once, think about the first time you had the test

Public system
Private system

d) What date was your first time having this test? (optional)

6. a) What was the test? (optional)

b) Who was the doctor that ordered this test for you the first time? (optional)

The GP
Emergency department staff of a hospital
Specialist doctor / doctor at a hospital

c) Did you have this test in the public or private health care system? (optional)

If you have had the test more than once, think about the first time you had the test

Public system
Private system

d) What date was your first time having this test? (optional)

Treatment

30. Have you had any of the following treatments for your cancer yet?

If so, can you please estimate the date this treatment started? If you cannot remember the exact date, you can fill in an approximate date.

Surgery (optional)

Yes
No

Date of surgery (optional)

(Give first date if series of treatments)

What hospital did you have surgery at? (optional)

(Hospital name, suburb/town, postcode)

Chemo-radiotherapy (optional)

(when chemotherapy and radiotherapy are given at the same time)

Yes
No

Chemo given by (optional)

Intravenous (by a drip/ into a vein)
Oral / tablet

Date of chemo-radiotherapy (optional)

(Give first date if series of treatments)

What hospital did you have chemo-radiotherapy at? (optional)

(Hospital name, suburb/town, postcode)

Radiotherapy (optional)

Yes
No

Date of radiotherapy (optional)

(Give first date if series of treatments)

What hospital did you have radiotherapy at? (optional)

(Hospital name, suburb/town, postcode)

Chemotherapy (optional)

Yes
No

Chemo given by (optional)

Intravenous (by a drip/ into a vein)
Oral / tablet

Date of chemotherapy (optional)

(Give first date if series of treatments)

What hospital did you have chemotherapy at? (optional)

(Hospital name, suburb/town, postcode)

Other treatment? (optional)

Yes
No

Please specify the other treatment (optional)

Date of treatment (optional)

(Give first date if series of treatments)

What hospital did you have this other treatment at? (optional)

(Hospital name, suburb/town, postcode)

Treatment not started yet (optional)

31. What do you think about the waiting time from diagnosis to starting treatment? (optional)

Too long
Appropriate
Too short
Don't know / not applicable

FERTILITY

32. Were you told about possible impacts of cancer treatment on your fertility (having your own children in the future) before your treatment started? (optional)

Please specify who told you (e.g. oncologist) (optional)

33. Was the discussion about fertility conducted in a sensitive and supportive way? (optional)

34. Before your treatment started, were you told about things that could be done to preserve your fertility (e.g. freezing sperm or eggs)? (optional)

35. Before your treatment started, were you offered a referral to a fertility specialist? (optional)

36 a) Did you have any procedures to preserve your fertility (e.g. freezing sperm or eggs)? (optional)

Yes
No

36 b) Date of fertility procedure (optional)

(Give first date if series of treatments)

If you cannot remember the exact date, you can fill in an approximate date.

36 c) Please specify procedure type (optional)

36 d) What hospital did you have your fertility procedure at? (optional)

(Hospital name, suburb/town, postcode)

37. Do you have any other comments about your cancer treatment, or fertility care? (optional)

ABOUT YOU

Please can you answer some more general questions about your health?

It would help us in interpreting your responses to this questionnaire to know about other health problems.

38. Looking back to the 2 years before you were diagnosed with cancer, would you say your general health was. (optional)

39. Before your bowel cancer, had you been treated for any of the conditions below?

Heart disease (optional)

Yes
No

Stroke (optional)

Yes
No

Lung disease (optional)

Yes
No

Diabetes (optional)

Yes
No

Depression or anxiety (optional)

Yes
No

Bone, muscle or joint conditions (e.g. arthritis, back pain, osteoporosis) (optional)

Yes
No

Inflammatory bowel disease (IBD), e.g. Crohn’s disease, ulcerative colitis (optional)

Yes
No

Irritable bowel syndrome (IBS) (optional)

Yes
No

Reflux (optional)

Yes
No

Previous adenoma (pre-cancerous polyp) of the bowel (optional)

Yes
No

Other digestive condition (optional)

Yes
No

Previous cancer (excluding non-melanoma skin cancers) (optional)

Yes
No

Other condition (optional)

Yes
No

Please specify other digestive condition (optional)

Please specify other condition (optional)

40. If you have been treated for a previous cancer (excluding non-melanoma skin cancer):

40 a) What type of cancer(s) was it? (optional)

40 b) In what year were you diagnosed with this other cancer? (optional)

(if you have had multiple cancers, please think about the one just before your bowel cancer diagnosis)

Family history

41. The following questions are about cancer in your family.

Each question asks about different relatives who may be living or dead.

For these questions, please think about your parents, children, brothers and sisters:

41 a) Have any of these relatives had bowel cancer before the age of 55? (optional)

Yes
No
Not sure

41 b) Have any of these relatives had bowel cancer more than once? (optional)

Yes
No
Not sure

For these questions, please think about your parents, children, brothers, sisters, grandparents, aunts, uncles, nieces, nephews and grandchildren:

41 c) Do you have more than one of these relatives who had bowel cancer at any age? (optional)

Yes
No
Not sure

41 d) Do you have more than one of these relatives who has had any of the following types of cancer: (optional)

Endometrial/uterus, ovarian, stomach, small intestine, pancreas, kidney, brain, ureters (tubes carrying urine from the kidneys to the bladder) or bile duct

Yes
No
Not sure

For these questions, please think about your own medical history:

41 e) Have you ever had a genetic test for an inherited condition or syndrome that is linked to bowel cancer risk, e.g. familial polyposis or Lynch syndrome? (optional)

Yes
No
Not sure

41 f) Do you have an inherited condition or syndrome that is linked to bowel cancer risk, e.g. familial polyposis or Lynch syndrome? (optional)

Yes
No
Not sure

41 g) If you do have an inherited condition or syndrome, were you aware of this condition before you were diagnosed with bowel cancer? (optional)

Yes
No
Not applicable

We would like to have a little more information about you.

The information you provide below will help us to understand the results of the survey in more detail.

42. What is the highest level of education you have achieved? (optional)

43. What is your current marital status? (optional)

44. Are you responsible for raising any children aged under 18? (optional)

Yes
No
Prefer not to say

45. Before your diagnosis, what was your employment status? (you can select multiple options) (optional)

Please specify the other employment (optional)

46. What is the main language spoken in your home? (optional)

If the main language spoken in your home is not listed below, please write your language by ticking ‘other’.

Other language, please specify (optional)

47. Do you have private health insurance? (optional)

48. How would you describe your current smoking behaviour? (optional)

For about how many years did you smoke? (optional)

When you smoked, how many cigarettes did you smoke per week? (optional)

How many cigarettes do you smoke per week? (optional)

Further comments: Please add anything else that you would like to tell us about your cancer diagnosis or treatment. (optional)

Consent form

Please read the information below. If you require any clarification, please call Rebecca Bergin on 03 9415 6467. Contact details can also be found on the information sheet.

Your responses are completely confidential and will not be passed to anyone involved in your treatment.

I confirm that I have read the attached information sheet and I understand why the research is being done.
I am willing for the research team to request information from my GP, or GP clinic, to assist with the study as described in the information sheet.
I give permission for my details and any other relevant information from my medical records to be passed onto the researchers and stored as described in the information sheet.

Your full name

Your GP, or GP clinic, contact details

Name of GP (optional)

Name of Practice (optional)

Address (optional)

Telephone (optional)

I agree to all the statements listed above and consent to participate in the study.

Date

Diagnosed before age 50 and interested in talking further about your experience?

Thank you for completing this survey which aims to compare how people aged younger than 50 and people aged 50 or more are diagnosed with bowel cancer.

We are also seeking to interview people aged under 50 to help us understand in more detail the pathway and process by which younger people have their bowel cancer diagnosed.

If this is you, we would like you to tell us more about your experience in a phone interview.

This will help us understand how to improve care for younger people with bowel cancer in the future.

If you would like to help or want more information about what the project is about, please tick the relevant box below. If you tick 'Yes' we may contact you with more information.

Are you interested? (optional)

Yes
No

My preferred contact is: (optional)

Phone
Email

The best telephone number to reach me on is: (optional)

The best email address to reach me on is: (optional)

Study results

If you would like a short summary of the results of this study (expected in 2024), please provide your preferred contact details:

Email (optional)

Postal address (optional)

If this is different from the address on the letter sent to you.

Email to come back later

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Understanding pathways to bowel cancer early diagnosis and treatment – comparing under vs over 50s

Patient questionnaire

EVENTS TO DIAGNOSIS

BEFORE YOUR DIAGNOSIS

Health concerns or symptoms before contacting a doctor

Tests you had

Treatment

FERTILITY

ABOUT YOU

Family history

Consent form

Diagnosed before age 50 and interested in talking further about your experience?

Study results