Hemophilia

 
Resilience and Quality of Life in Individuals with Hemophilia
Consent

You are invited to participate in this research study because you have hemophilia and are seen at a Hemophilia Treatment Center or have contact with one of the Hemophilia chapter affiliates in the United States. The purpose of this research project is to better understand the psychological and emotional impact of aging with hemophilia, how this affects quality of life, and how resilience and healthy coping skills are developed. This is a joint research project of the Adult Hemophilia Treatment Center at Henry Ford Health System in Detroit, Michigan and the Social Work Program at Oakland University in Rochester, Michigan.

Our study has 3 parts - a survey we have developed, and 2 standardized questionnaires. Completion should take approximately 20 minutes. Your responses will kept anonymous and we do not collect any identifying information such as your name, email address or IP address. The purpose of the study is to ask about your diagnosis and treatment, work or disability and source of income, severity of your bleeding disorder, marital status, treatment and pain management, and how well you do every day activities in order to understand more about living and getting older with hemophilia. (If you are participating by using the paper version of the survey tools, you will have pre-paid return envelopes provided to ensure anonymity).

Your participation in this research study is voluntary. You may choose to participate or not. There is no penalty if you decide not to participate. There is no risk to you if you participate, and there is no immediate benefit if you participate. We hope to identify some of the positive and protective factors so that HTC Social Workers and staff may promote strategies that would help improve quality of life; this would be a future benefit.

All data from the on-line survey is stored in a password protected electronic format. If you are using a written version, it will only be kept until our study is complete and the surveys are entered into the electronic database. The results of this study will be used for scholarly purposes only.

If you have any questions about the research study, please contact Ellen Kachalsky, LMSW, ACSW at (313) 916-0470. This research has been reviewed according to Henry Ford Health System IRB procedures for research involving human subjects.

Clicking on the “agree” button indicates that:
• You have read the above information
• You voluntarily consent to participate to the survey
• You are at least 18 years of age

Directions:

Please answer each of the questions to the best of your ability by indicating the response that best describes your situation generally or most of the time. There are also some questions where you may write or type in additional information.

If you are completing the paper version of the survey, please return completed survey to:

Ellen Kachalsky, LMSW, ACSW
Hemophilia Treatment Center
Henry Ford Hospital
2799 West Grand Boulevard, K-13
Detroit, MI 48202

Thank you very much for considering participating in this study.



1. I have read and understand the consent to participate in this study and
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