People with type 1 diabetes live with lifestyle restrictions, blood glucose checks, insulin and other therapies, and always the possibility of hypoglycaemia. So how does life change for the relatively few people who’ve had the opportunity to receive an islet cell transplant?
Professor Jane Speight, foundation director of the Australian Centre for Behavioural Research in Diabetes (ACBRD), has gathered some insights through her work on the psychosocial issues associated with islet cell transplantation.
Prof Speight was an invited speaker at the 77th Scientific Sessions of the American Diabetes Association held this month in San Diego. The limbic spoke to Professor Speight on her return.
What are some of the common concerns that people with type 1 diabetes have when considering a islet cell transplant, and how can health professionals best assist during the decision making process?
People are concerned about how to balance the risks against the potential benefits. So the healthcare team needs to discuss the potential disadvantages with them clearly and openly. Once they decide to have the procedure, then it is a waiting game.
People told us they had to temper their enthusiasm (and particularly their family’s positive expectations), putting life on hold ‘just in case’ the telephone rings, and sometimes dealing with the ‘false alarm’ of being called in for the procedure but something going wrong at the last moment, such as the transplant team can’t isolate enough islet cells from the donor pancreas.
They also worry about the risks to their immune system and side effects of immunosuppression therapy – but mostly, people told us they took an optimistic or fatalistic view. One person said, “There are risks to everything. You walk across the road and it’s a risk, isn’t it?”.
Does your research indicate which people, from a psychosocial perspective, might be most suited to islet cell transplantation? Are there personality traits or life circumstances associated with a better outcome?
Our qualitative research reveals that those who feel most positive after receiving an islet transplant are those whose main concern pre-transplant was recurrent severe hypoglycaemia. It is the freedom from hypoglycaemia that drives the benefit people experience.
Some people are optimistic that they will no longer need insulin injections but that is a reality for less than 50%. So we advise people not to expect to be free of insulin injections, and not to see islet transplants as a cure for diabetes. The positive outlook and the emphasis that people placed on luck and fate appears to be important as a coping strategy to protect against the uncertainty of ‘life on the list’, and the possibility of organ rejection.
People have an islet cell transplant to improve their glycaemic control but your research found they also find ‘greater spontaneity and independence’ in their lives. How do transplant recipients describe their quality of life?
Pre-transplant, people feel their lives are severely limited by the unpredictability and frequency of their severe hypos. Over half of the people in our study were having at least one severe hypo per month and some were having them once a week.
One person summed up the impact of their life pre-transplant for their quality of life: “I want to get back out there on my own and not need chaperoning and not relying on people.” Post-transplant, one person commented: “It’s been a huge, vast improvement, that I’ve actually got an independent life and a job and all that kind of stuff now.” Islet transplantation is not necessarily life-saving but it is life-changing.
Are there people who regret their decision to have this procedure and if so, have we overhyped the benefits of islet cell transplants?
Balancing the uncertainty of being on the waiting list, the risks associated with immunosuppression therapy and the surgery against its eventual outcomes, most people indicate they have “no regrets” about “going for it”. It is important to be realistic, however, about the negative sides of islet transplantation and ensure that people have all the information with which to make an informed decision.
Of course, we also know that can be difficult for people to really understand risk information – but the medications are getting better all the time and the risks are reducing. I think the biggest hype is the idea that it could be an option for everyone, and that it is a cure for diabetes. Neither of those are true.