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A Patient’s Journey through Heart Failure

Time: < 25 Minutes
Target Survey Participants: Heart Failure Patients

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Survey Overview & Purpose

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. 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.

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

Target Survey Participants
Heart failure patient

Length of Survey
Less than 25 minutes

Recommendations for Physical Activity in Left Ventricular Assist Device Recipients – New Survey!

Time: < 10Minutes
Target Survey Participants: Heart Failure Providers

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More Information & Survey Link
Survey Overview & Purpose

The purpose of this study is to examine clinician perceptions of physical activity pre- and post-LVAD implantation. We will assess physical activity recommendations made to LVAD recipients in the pre- and post-implantation time periods and if the recommendations are associated with clinician and/or site characteristics (institution, size, status, and/or location).
Participants are clinicians directly involved in the care of LVAD recipients (including but not limited to cardiothoracic surgeons, LVAD coordinators, LVAD nurses, heart failure nurses, advanced practice providers, cardiac rehabilitation, etc) You can forward this request to someone at your site who is better informed if you are not the right person. Participants are asked to complete a 1-time, online, anonymous survey consisting of up to 40 items (some items may be skipped depending on your responses).

There are minimal risks of participating in this project, mainly, risk to the confidentiality of your responses. The research team takes your confidentiality seriously. The questionnaire is administered by REDCap, a secure, web application designed to support data capture for research studies. Your email address will not be saved in REDCap; the questionnaire is anonymous. Project data is stored in an encrypted computer within the University of Nebraska Medical Center. Once you complete the online questionnaire, your involvement in the project is over. There are no direct benefits and no compensation for participation, but new knowledge may inform the development of pre- and post-implantation physical activity guidelines for LVAD recipients.

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 questionnaire, you may withdraw at any time, for any reason. After reading this invitation you can (1) voluntarily agree to participate in this project (complete the survey) or (2) decide to not participate.

If you have any questions about the research, you can contact the study investigators: Windy Alonso, PhD, RN by phone at 402-559-8342 or email at windy.alonso@unmc.edu, Bunny Pozehl, PhD, APRN-NP by phone at 402-559-3182 or email at bpozehl@unmc.edu, or Timothy Ryan, APRN-NP by phone at 402-559-5189 or email at tryan@nebraskamed.com, . If you have any questions regarding your rights as a research subject, you should contact the University of Nebraska Medical Center Institutional Review Board at (402) 559-6463.
The survey will take 10 minutes or less to complete. You may access the survey at the following link: https://is.gd/LVAD_clinician_survey

Target Survey Participants
Heart failure providers

Length of Survey
Less than 10 minutes

 

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