Input to a study aiming to optimise the care and support for pancreatic cancer patients and their families and carers

About the survey: You have been invited to complete this survey to feed into a full-time funded PhD project aiming to establish how we can optimise the care and support provided to patients and their families/carers following a diagnosis of pancreatic cancer. The purpose of this survey is to give people affected by pancreatic cancer the opportunity to provide meaningful feedback and insight to the researcher leading the study. This is an important part of the research process and helps to ensure that the research being conducted is relevant to the needs of people affected by pancreatic cancer.

Thank you again for your help with this.

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* 1. Have you had a diagnosis of pancreatic cancer?

Yes

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* 2. If you have had a diagnosis of pancreatic cancer, when did you receive your diagnosis?

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* 3. If you have not had a diagnosis of pancreatic cancer, which of the following terms would you use to describe yourself? Please select all that apply.

Family member of someone who has had a diagnosis of pancreatic cancer

Partner of someone who has had a diagnosis of pancreatic cancer

Spouse of someone who has had a diagnosis of pancreatic cancer

Caregiver of someone who has had a diagnosis of pancreatic cancer

Loved one of someone who has had a diagnosis of pancreatic cancer

Friend of someone who has had a diagnosis of pancreatic cancer

Other (please specify)

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* 4. The aims of this project are to:

Understand how care is currently delivered and where there is variation in care

Explore the experience of receiving care and support for patients and their family-carers

Explore the experience of healthcare professionals of providing care and support

Determine gaps in care that result in a poor experience for patients, and their family-carers and explore how these gaps can be addressed

Drawing from your own experiences, how relevant and important do you think this project is to people affected by pancreatic cancer? Please explain.

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* 5. Do you think that people would be inclined to take part in the study when its aims are explained to them? Please explain your answer.

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* 6. When do you think is an opportune time to raise the possibility of participation with patients and their families?

At the time patients receive their diagnosis

At the time patients have their first appointment with a healthcare professional after their diagnosis and their treatment plan is discussed

Within the first two weeks of receiving a diagnosis via a checking-in call from the CNS

Other (please specify)

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* 7. Who do you think is best placed to introduce the study to potential participants? Please select all that apply.

Cancer Nurse specialist

Oncologist

Fellow patient representative

The researcher directly

Other (please specify)

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* 8. When introducing the study to patients, families and carers, which of the following would be preferable?

A member of the clinical team provides a short summary of the project and then follows up with a phone call to see if they are interested in taking part sometime later

People to be given a full information pack and be left to make contact with the researcher directly

Other (please specify)

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* 9. What information do you think patients, families and carers will need in order to make a decision to take part? Please select all that apply.

Exactly what they are being asked to do

What the time commitment will involve

Whether they will have to travel anywhere to take part

Will expenses be paid

What will happen to their information?

Can they withdraw if they want to?

Can someone carry on with the study even if their partner/loved one decides to withdraw

Can they take part in the interviews but not the workshops?

Who the research is being conducted by and for what purposes?

What is the involvement of Pancreatic Cancer UK?

Other (please specify)

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* 10. Would it be helpful if there was a short bio of the researcher and a photo in the information pack?

Yes

Other (please specify)

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* 11. Do you have any other ideas of what the researcher could do to encourage people to participate?

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* 12. The current proposal is to interview patients and their families and carers:

1 month after diagnosis

3 months after diagnosis

6-9 months after diagnosis

They will also be invited to attend workshop events. Do you think this is appropriate for patients and their families? Please explain your answer.

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* 13. What do you think would be the maximum interview duration that is manageable for patients and their families/carers?

30 minutes

45 minutes

60 minutes

90 minutes

Other (please specify)

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* 14. From the patient perspective, do you think there is a particular time when its best to undertake the interviews?

Morning

Afternoon

Evening

Weekend

Other (please specify)

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* 15. Do you think patients would prefer to be interviewed before their family member-carer/loved one, or afterwards, or do you think it makes no difference?

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* 16. Do you think patients, families and loved ones would feel comfortable completing a diary or treatment log in order to act as a memory aid when talking about their experiences of the care and support they have been receiving when participating in this project?

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* 17. Do you have any other suggestions of how to make participation as simple and straightforward as possible?

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* 18. Do you have any other comments?

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* 19. Would you like to be contacted about other opportunities to input to this study in the future?

Yes

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* 20. If you answered yes in the previous question, please leave your full name and email address here (this information will only be available to the PCUK Research Team)