Exploring the experiences of hemochromatosis (HHC) patients who undergo therapeutic venesection at a blood collection agency.

Abstract

Background: People with hereditary hemochromatosis (HHC) require therapeutic phlebotomy on an ongoing basis. Little is known about the facilitators and barriers they experience in donating at a blood collection agency (BCA), nor how these impact their willingness to engage in an ongoing relationship with a BCA. This study explored the experiences of HHC donors undergoing therapeutic phlebotomy at the Australian Red Cross Lifeblood (Lifeblood) in Australia.

Study design and methods: All HHC donors who had made at least one donation at Lifeblood in the last 2 years were invited to complete a survey. In this paper, we report the findings on enablers and barriers to donating at Lifeblood, donor and patient identity, communication, knowledge of blood use and of plasma, interest in donating plasma, and engagement in positive word of mouth about donating.

Results: Data were obtained from 4350 therapeutic donors. Responders identified more enablers than barriers to donating at Lifeblood and 61.8% reported that Lifeblood used their blood. Responders were more likely to identify as donors than patients, and those with a stronger donor than patient identity were significantly more likely to report that their blood was used, had greater interest in donating plasma, and reported engaging in more positive word of mouth about donating.

Discussion: Findings indicate that BCAs can do more to educate donors with HHC about how their blood is used to help others. Doing so may help to retain them as donors and can be beneficial for the blood supply, as well as for the donors themselves.