Online Survey Consent Form

Health Information Needs, Source Preferences and Engagement Behaviors of Women With Metastatic Breast Cancer Across the Care Continuum

You are being invited to participate in a research study entitled Health Information Needs, Source Preferences, and Engagement Behaviors of Women With Metastatic Breast Cancer Across the Care Continuum. This study is being done by Carol Tucker under the supervision of Professor Ray Jones Plymouth University, United Kingdom, and Dr. M. Pilar-Martin of Adelphi University, New York, USA.

The purpose of this research project is to obtain information from women with metastatic breast cancer about your experiences in getting information about your cancer and your views about your information needs and sources.

We will use an anonymous online questionnaire to obtain the views of women with metastatic breast cancer who agree to take the survey. This questionnaire will ask for your age, education, and ethnicity; how long you have been diagnosed with metastatic breast cancer and your current disease status; and how you obtain information about metastatic breast cancer and your opinion of this information. It will take you about 30 minutes to complete, including the time needed to read this document and an information sheet.

You may not directly benefit from this research; however, we hope that your participation in the study will help us to better understand the information needs and experiences of women with metastatic breast cancer and enable the improvement of resources meeting these needs.

Periodic summaries of the anonymous survey answers will be posted on bcmets.org, Young Survival Coalition (https://www.youngsurvival.org/), METAvivor (http://www.metavivor.org/), and other participating web sites for review and comment by the users of those sites.

Following this, study results will also be incorporated into the PhD dissertation of Carol Tucker, the Principal Investigator and submitted to suitable peer-reviewed journals for publication.

All reports or summaries of the survey results will contain only anonymous aggregate information.

We believe there are no known risks associated with this research study. You may feel a little uncomfortable answering some survey questions.

We will minimize any risks to breach of confidentiality by ensuring that all information collected will be anonymous.

Your anonymous survey answers will be sent to a link at SurveyMonkey.com where data will be collected and stored initially in a password-protected electronic format. Survey Monkey does not collect identifying information such as the respondent’s name or email address, and will be set so as not to collect your IP (internet) address. Therefore, survey responses will remain totally anonymous.

No one will be able to identify you or your answers, and no one will know whether or not you participated in the study. Following the close of the survey, responses to the survey will be stored on a password-protected laptop in the possession of the Principal Investigator,
Carol Tucker.

Your participation in this survey is completely voluntary. You may refuse to participate altogether in the survey or you may skip any question you choose when completing the questionnaire. However, once you have completed and submitted the online questionnaire, you will no longer be able to withdraw your responses since the surveys are anonymous, containing no information by which you can be identified and, as such, cannot be traced.
If you feel upset after completing the survey, or find that some questions in the survey triggered distress and would like assistance, you may contact:
  1. The convenor of your support group (eg, bcmets.org, or METAvivor.org)
  2. The American Cancer Society (ACS) at 1-800-227-2345.
  3. The Susan G. Komen Foundation breast care helpline accessible via 877-465-6636 or email to helpline@komen.org.
  4. The Metastatic Breast Cancer Network (888-500-0370).
  5. Cancercare (https://www.cancercare.org/services) by calling 800-813-HOPE (4673) or via email to infor@cancercare.org;
  6. The Adelphi New York Statewide Breast Cancer Hotline & Support Program. Hotline: 800.877.8077 or contact Sandi Kafenbaum, LCSW, Counseling Services Coordinator, at 516.877.431.

You may also contact Carol Tucker, the Principal Investigator, for assistance with making contact with these and other support organizations.

If you have any questions about this survey or if you have a research-related problem, you may email Carol Tucker at carol.tucker@plymouth.ac.uk , Dr. M. Pilar Martin at MPmartin@adelphi.edu, or Professor Ray Jones at ray.jones@plymouth.ac.uk

This research has been reviewed and approved by the Adelphi University Institutional Review Board (IRB). If you have any questions, concerns or comments, please contact the IRB chair, Dr. Carolyn Springer, 516-877-4753; springer@adelphi.edu.

This research has been reviewed and approved by the Education and Research Ethics Sub-Committee of the Faculty of Arts and Humanities of the University of Plymouth, Plymouth, United Kingdom. You may also contact them with questions, concerns, or comments by email to artsresearchethics@plymouth.ac.uk.

Carol Tucker, Pilar Martin, and Ray Jones

ELECTRONIC CONSENT: Please select your choice below (“Agree”/“Do Not Agree”). You may print a copy of this consent form for your records. By clicking on the “Agree” button below, you are indicating that you are at least 18 years old, have read and understood this consent form, and voluntarily agree to participate in this survey.

Question Title

* 1. Electronic Consent

T