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 currently seeking participants for an anonymous research study, “A Patient’s Journey through Heart Failure,” which is open to all adults living with heart failure. Please visit our website for more information or take the survey now.
By responding, you’re giving patients a voice about how treatment and living with HF truly impacts their everyday lives. In addition, the knowledge gained from this survey may be used by healthcare providers to develop programs, services, and interventions to improve the experience of patients living with HF.
About the Survey and Research
The survey involves responding to questions that describe patients’ journeys in living with heart failure. The survey has 9 themes:
- Symptoms, and influence of symptoms on daily activities
- Communication with providers
- Confidence in managing care
- Shared decision-making
- Knowledge about heart failure
- Psychological support
- Caregiver support
- Worsening heart failure
- Advanced care planning/palliative care
You will also be asked questions about your background, including your age, gender, and other characteristics, history of chronic medical conditions and completion of two (2) brief tools that tell us about your current symptoms and ability to carry out daily activities. The survey is completed online 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. Project 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.