Potential VCA Candidates, Caregivers, and Providers Motivations, Expectations, and Shared Decision-Making in VCA
Abstract
The objective of our study is to better understand the decision-making process that military Service personnel and civilians and their lay caregivers use when considering treatment options following amputations of their upper extremities (hands and forearms) or significant damage to their face. For some of these individuals, hand or face transplantation may be a good treatment option, but requires surgery, taking immunosuppressive medications to protect the transplant arms or face from being rejected by their own immune system, and a lengthy recovery. We believe that a type of research called qualitative research is well suited to understanding the values, preferences, motivations, and expectations of these individuals and their families. This will allow researchers and transplant teams to better match the kind of treatment we are offering to the result that the patient and their family would want. The research is conducted through interviews, which are then studied for certain recurrent themes that will help us know what the most important concerns are for the patients and their family members. Once we have obtained this information, we will take the information that the patients and their families have provided and compare it with the information that we learn from interviews with the medical providers to see whether there are gaps in the way the medical providers believe that hand or face transplants may help patients compared to the patients’ and lay caregivers’ beliefs and preferences. The second part of our study will be to consider new ways of helping patients and their lay caregivers communicate with the medical team. The information that we learn can be used to create a conversation aid to help the patients consider the treatment options that are available to them. This kind of decision aid has been used with patients with diabetes, osteoporosis, and depression to help weigh the pros and cons of treatments. We believe this would be valuable to the patients and their lay caregivers, as well as to the medical teams, to improve communication and match the patients to the best treatment option. This will be consistent with the request for funding research that addresses factors impacting a patient’s decision to pursue VCA. The ultimate impact of this research will be to have the best candidates for VCA matched with this treatment because patients who may not fully understand the transplant surgical option could be disappointed or frustrated with the effects of immunosuppression medications or the lengthy recovery, leading them to possibly not take their medication or not participate in physical therapy. This could lead to the hand or face not functioning or even rejection (loss) of the hand or face transplant. Of all military amputations, 18%-50% were upper extremity, and 74% of all combat injuries from 2001 to 2011 resulted from explosions (with a prevalence of 30.5 injured per 10,000 deployed) leading to multiple forms of trauma, including facial injuries. For those in military Service, our research could help amputees and facial trauma patients to be able to choose between options so that they could live as fully a functional life after injury as possible. We believe this research will apply to civilians with similar injuries. Our research will be completed in 3 years and will help VCA teams communicate with and select the best candidates for surgery.
Document Details
- Document Type
- DoD Grant Award
- Publication Date
- Oct 29, 2018
- Source ID
- W81XWH1810676
Entities
People
- Sheila Jowsey-gregoire
Organizations
- Mayo Clinic
- United States Army