Download CAF Focus Group Report
July 21, 2015 – This spring, CAF sponsored a series of focus groups among 102 individuals with thalassemia and parents of individuals with thalassemia in order to better assess the needs and wants of the U.S. thalassemia community. We are happy to now share the results of this project, which was conducted by Stat One Research.
CAF is always interested in getting as much feedback and information as possible from members of the thalassemia community.
The kind of information we gather from a formal process such as focus groups and surveys is especially important, as it provides us with access from many different people in different parts of the country. This can help us to get a “bigger view” of what people in the thalassemia community believe and experience. Some of the information confirms what we think (and therefore lets us know to keep on working in a particular direction); some of it helps us to look at things in new ways (so we can modify what we are doing); and some of it introduces us to new issues or ideas that can influence what the Foundation does in the future. All of this is enormously helpful and valuable.
We learned a great deal that will help us as we move forward. Just to give a few examples:
- Our next Patient-Family Conference will be held in the western part of the United States, in response to comments from participants who feel that more needs to be done to expand CAF’s presence around the country.
- CAF has long been committed to promoting the importance of adherence to treatment. Thanks to the focus groups, we understand that we need to be clearer in defining treatment so that the emphasis is not solely on chelation but also on transfusions, proper tests, dietary/nutritional regimens, etc.
- Participants indicated an interest in more information concerning clinical trials. CAF’s Patient Outreach Director Sandy Gilbert is working to keep our clinical trials page up to date and is available to talk with patients and parents about what kind of questions they need to ask to determine if participation in a clinical trial is right for them.
- For some patients, transition from a pediatric care setting to an adult care setting continues to be challenging. CAF will be consulting with its Medical Advisory Board to determine what might be done to help in this area.
- Many patients discussed the importance of peer-to-peer communications for support purposes. CAF is investigating new models for making this possible and will be inviting interested individuals to work with us in this area in the near future.
- CAF will strengthen its efforts to provide more information of relevance to individuals with non-transfusion-dependent thalassemia.
CAF greatly appreciates the help of all those who participated in this project. Their willingness to share opinions and information will help CAF better serve the entire community as we move forward.