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AYA Change Cancer Care Survey

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

Becoming an adult already has its challenges and facing cancer doesn’t help. You may feel like peer relationships, developmental milestones and life goals are on pause during treatment. Times may feel hardest following therapy, when you may face treatment-related infertility, financial hardship, chronic health problems and possible workplace discrimination. You may hear people describe what you're feeling as post-traumatic stress symptoms.

We feel your pain — and we want to make it better. To do that, we need to hear from you.


Below is a legal statement we are required to tell people who are participating in the survey, and it helps you to know if you are the right person to be taking this survey

Investigator’s Statement
You have the choice to be in a research survey. 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:

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

The survey is about your experiences during cancer treatment. This survey is available to people who visit a website with a link to the survey or use media from Stupid Cancer or Teen Cancer America. These sites together receive over 300,000 views per month.

Do not take the survey if you did not have cancer as an adolescent or young adult (AYA) between 15 and 39 years of age.

This study is led by Dr. Rebecca Johnson, 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 health care providers take better care of AYAs with cancer. Being in this research study may help other AYAs with cancer. You may also benefit by getting to help others.

Procedures
If you are a survivor of AYA cancer, you may choose to complete an online survey. The survey asks about the care you received during your cancer treatment. After you complete this consent page, the survey will appear. It will take about 30 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 16 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 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, your cancer 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.

Questions/Contact
If you have questions about this study, please contact Dr. Rebecca Johnson. You may contact her at any time. If you have any questions about your rights as a research participant, please contact the MultiCare Health System 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 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.

Begin Survey