Before you decide if you would like to take part, we want you to understand why we are doing this study at Anthony Nolan and what it would involve for you. Please take time to read through the information provided.
If there is anything that is unclear or that you would like more information on, please don’t hesitate to get in touch.
Why have I been invited to take part in this study?
You have been invited to take part in this study because you have recently received a grant from Anthony Nolan, either for yourself, or on behalf of a patient you care for.
Why is Anthony Nolan doing this study?
Financial Toxicity (also referred to as financial hardship, financial distress or financial burden) refers to the economic burden and distress caused by the costs of cancer care. Financial Toxicity can have a negative impact on patients’ quality of life.
Anthony Nolan provides one-off grants to support stem cell transplant and CAR T-cell therapy patients with these unexpected costs. As part of this process, we collect basic demographic information such as gender, age, ethnicity, transplant type and treatment place of those who receive a grant. However, little is known about the financial strain experienced by grants recipients or how receiving a stem cell transplant or CAR T-cell therapy has affected their overall wellbeing.
The purpose of this study is to understand the degree of financial toxicity amongst grants recipients.
What will taking part involve?
If you agree to take part, we will ask you to complete a questionnaire. It should take no more than 10 minutes to complete. If you are completing the questionnaire on behalf of the patient, please answer the questions based on the patient's experiences wherever possible.
The questionnaire will ask for some basic information about the patient, such as age, gender, ethnicity, diagnosis, and type of transplant or CAR-T therapy. We will also ask about the patient's social circumstances, including employment status, living arrangements, household income, and relationship status.
As part of the study, you will also be asked to complete a questionnaire called the Patient-Reported Outcome for Fighting Financial Toxicity (PROFFIT). It contains 16 questions about any financial pressures experienced during or following the patient's treatment. This includes questions about healthcare-related costs, changes to work or income, and how these may have affected day-to-day life and wellbeing.
There are no right or wrong answers. We are interested in understanding the patient's experiences.
What are the benefits of taking part?
If you choose to take part in the study, you will be eligible to claim an optional £5 Prezzee voucher as a token of appreciation for your time.
Are there any risks?
There are no risks involved with taking part in this study.
We appreciate that the subject of the study is sensitive in nature, and you may find reflecting on some of the financial challenges you have faced or continue to face to be upsetting. Please know, you do not have to complete the questionnaire and are free to withdraw from the study at any time, without giving a reason.
If you decide not to participate, your relationship with Anthony Nolan will not be affected in any way. You are not obligated to participate in this study and your grant will not be impacted.
What data will be recorded, how will it be used and who will have access to it?
The data recorded will be handled in accordance with the General Data Protection Regulation (GDPR) 2018. This means that we will responsibly store the data in a secure manner and take all necessary steps to make sure that the data remains confidential.
We will only use personal data, such as your email address, for the purposes of contacting you about taking part in the study. We will anonymise the data recorded to ensure that you cannot be identified in any resulting publication or other outputs. Access to the data recorded will be strictly limited to members of the Anthony Nolan research team only. Your personal data, such as contact information, will not be passed to any third parties.
Can I change my mind about being involved in this study after I have said “Yes”?
Yes, it is completely up to you whether you take part in the study. If you agree to take part, you are free to change your mind at any time without giving us a reason. If you choose to withdraw from the study, we will not include any recorded data up to your withdrawal in our analysis.
Withdrawing from the study will not affect any current or future support you receive from us.
If you change your mind about participating in the study after you have already completed the questionnaire, you can still withdraw your data from the study by letting us know using the contact information below. This will not impact your receipt of the optional incentive voucher, if you chose to claim it.
How can I find out about the results of the study?
Findings from the study will be analysed and written up for publication in a peer-reviewed journal and presented at scientific conferences. We will share with all participants a lay summary of the results.
Who should I contact if I would like to discuss the study further before I decide whether or not to take part?
If you would like to speak to a member of our research team about the study or ask any further questions about your involvement, please contact:
- A member of our research team on researchps@anthonynolan.org
- Our helpline: 0303 303 0303
Who do I contact if I have a concern, or if I wish to complain?
Please contact Dawn Hart, Director of Patient Services, Anthony Nolan by emailing dawn.hart@anthonynolan.org and a member of the Patient Services team will respond as soon as possible.
Who should I contact if I need additional support?
A potential risk of taking part is that you may find sharing personal details about your experience upsetting.
We can assure you that the study has been designed to minimise distress and has been reviewed by Anthony Nolan patient representatives.
If you are distressed or upset by the contents of the questionnaire or need support, the Anthony Nolan helpline is available on 0303 303 0303 from 9am-5pm Mon-Fri (excluding bank holidays). If you require support outside these hours, please contact your healthcare team.
Patient Information Sheet V2.0 16.04.26
Last updated: 10 August 2026