Dear Potential Research Participant,
Adults living with chronic heart failure may have a unique perspective that is important for healthcare providers to understand. To help providers gain this perspective, The Heart Failure Society of America is supporting a research study. As an adult with heart failure, you are being invited to participate in a research study titled: “ A Patient’s Journey through Heart Failure.”
The research involves responding to questions that describe patients’ journeys in living with heart failure. The survey has 9 themes: (1) symptoms, and influence of symptoms on daily activities; (2) communication with providers; (3) confidence in managing care; (4) shared decision-making; (5) knowledge about heart failure; (6) psychological support; (7) caregiver support, (8) worsening heart failure and (9) advanced care planning/palliative care. We will also ask you some questions about your background, including your age, gender, and other characteristics, history of chronic medical conditions and completion of 2 short tools that tell us about your current symptoms and ability to carry out daily activities. The survey is completed on-line and therefore requires access to a computer.
There are minimal risks of participating in this research project, mainly, risk to the confidentiality of your responses. The research team takes your confidentiality seriously. The online survey is administered by REDCap, a secure, web application designed to support data capture for research studies. The survey is anonymous; your email address will not be saved in REDCap. P roject data is stored in an encrypted computer within the Cleveland Clinic. Once you complete the online survey, your involvement in the research is over. There are no direct benefits and no compensation for participation, but new knowledge may be used by healthcare providers to develop programs/services and interventions that can improve your journey living with heart failure.
Your participation in this research project is voluntary. Refusing to participate will not be held against you in any way. If you decide to complete the survey, you may withdraw at any time, for any reason. After reading this note, you can (1) voluntarily agree to participate in this research project (complete the survey) or (2) decide to not participate. If you have any questions about the research, you can contact the principal investigator: Nancy Albert PhD, FAAN by phone at 216-444-7028 or at albertn@ccf.org. If you have any questions regarding your rights as a research subject, you should contact the Cleveland Clinic Institutional Review Board at 216-444-2924. There are 100 short questions with answer options. The survey and questionnaire can be completed in 25 minutes or less . If you agree to voluntarily participate in the research, please click the following link or paste the link in a web browser to get to the research survey:
https://is.gd/heart_failure_Journey Completion of the survey and questionnaire will indicate your agreement to participate in the research.
Sincerely,
Nancy Albert, PhD, CHFN, FHFSA, FAAN
Associate Chief Nursing Officer, Research and Innovation
Cleveland Clinic, Cleveland Ohio
