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Caregiver of Adolescent and Young Adults (AYA) Change Cancer Care Survey

*Please read this page in its entirety before beginning the survey at the bottom.*

Our research group wants to improve cancer care for Adolescents and Young Adults (AYAs) diagnosed with cancer between 15 and 39 years of age.

To achieve this goal, we're asking you- a caregiver of a young cancer patient or survivor- to share your thoughts about the young person’s cancer treatment experiences in this about 15 minute survey.

We will publish the results of the survey, and tell doctors and hospitals what adolescents and young adults want their cancer care to look like.

To improve cancer care for young people, we need to hear from you!


Investigator's Statement

You have the choice to be in a research study. This form gives you information about what will happen if you choose to be in this study.

You can be in this research study if you are an adult over 18 years of age in the United States: who has been or is caring for a family member or friend:

  • Diagnosed with cancer between 15 and 39 years of age
  • On or off treatment

The survey is about your and your family member or friend’s experiences during cancer treatment. This survey is available to people who are on a website with a link to the survey, use media from or receive email regarding the survey from an organization that provides support to adolescents and young adults with cancer.

This study is led by Rebecca Johnson, MD, Medical Director of the Adolescent and Young Adult Cancer Program at Mary Bridge Children's Hospital/MultiCare Health System. It is sponsored by the Patient Centered Outcomes Research Institute (PCORI), "Establishing a Patient Centered and Community Based Adolescent and Young Adult Oncology Council" contract #2909. CanTeen, Stupid Cancer and Teen Cancer America are collaborating on this project. It is approved by the MultiCare Heath System Institutional Review Board.

Purpose and Benefits

AYAs have different needs than children or older adults with cancer. We are studying what AYAs want their care to look like. This information will help healthcare providers take better care of AYAs with cancer. Being in this research study may help other AYAs with cancer and their caregivers. You may also benefit by getting to help others.

Procedures

If you were or are a caregiver of someone with AYA cancer, you may choose to complete an online survey. The survey asks about the care you and your AYA family member/friend received during your cancer treatment. After you complete this consent page, the survey will appear. It will take about 15 minutes to finish. If your answers show that a category of questions does not apply to you, the survey will automatically skip that section and move to the next section. The link will be live for you to complete the survey for a period of 32 weeks. You do not have to complete the whole survey at one time. If you choose to save your progress and return later, REDCap will provide you with a Return Code. You will use this code to complete the survey or change your answers at a later date. You may skip any questions you do not want to answer.

Risks or Discomfort

Completing the survey will take time. You may work on the online survey wherever and whenever you want. If you get tired or bored, you can take a break and finish the survey later. Thinking about your and your AYA family member/friend’s cancer experience could upset you. If this happens, you may skip questions or stop the survey. If you are still upset, tell someone close to you right away. You can tell your primary doctor or other people who give you support. You may also email Dr. Johnson at [email protected]. If you are feeling very bad, do not wait for an email response. Seek emergency medical care immediately.

Costs

There will be no cost to you for completing the survey.

Confidentiality

If you join this study, the research team will try hard to keep your information private. Your responses to the survey will be anonymous, labeled only with a study number. If results of this research study are published, we will not use information that identifies you. We will only share information if we have to by law. We will only share it with authorized representatives of MultiCare Health System and PCORI. We will store all research records in locked cabinets and secure computer files. After the study ends, Dr. Johnson and her team will keep the data on a password protected computer server. Team members may get human subjects approval for future projects and use this data.

Questions/Contact

If you have questions about this study, please contact Dr. Rebecca Johnson at [email protected]. You may contact her at any time. If you have any questions about your rights as a research participant, please contact the MultiCare Institutional Review Board (MHS IRB) directly by calling the MHS IRB Office 253-403-3877.

Participant's Statement

I certify that I am an adult at least 18 years of age, and that I have been or am caring for a family member or friend who was diagnosed with cancer between the ages of 15 and 39 years of age.

I have read this consent form. I choose to be in this research study. I know that it is my choice whether to complete the survey. I know that I may choose not to be in this study. If I start the survey, I know that I may stop it at any time. I know that completing or not completing the survey will not affect my medical care. I understand the purpose of this study. I understand the potential risks and benefits of participating. I know who to contact if I have more questions. By clicking the button below I show that I consent.