What the research is looking at?
Little is known about the experiences of people with very severe Crohn's disease when they face particularly harsh or radical treatments.
This study looked at the experiences of people with Crohn's who have considered participating in a stem cell replacement trial. They looked at people who participated in a particular trail called the ASTIC Trial (Autologous Stem Cell Transplantation International Crohn’s Disease Trial).
Stem cell replacement involves patients receiving healthy stem cells previously harvested from their bone marrow, in place of their existing stem cells (which are killed off by a form of chemotherapy).
Stem cells are the body's natural 'renew and repair' cells. The hope is that the transplanted stem cells multiply, essentially 're-starting' the patient's immune system – which may help people with IBD.
This project examined the experiences, motivations and perceptions of both people who took part in the trial, and those who considered taking part but decided not to. It explored how the people taking part in the study made their decisions, expectations and experiences of treatment, and recommendations for best quality care in the future.
It was carried out by interviewing thirty-eight patients – twenty-two of these had taken part in the ASTIC trial, and sixteen had been unable or unwilling to take part in the trial.
Conclusions:
The researchers looked at why people did or didn’t take part in the trial. They found that it is important that heath care professionals should consider the ‘hard fought battle’ of living with Crohn’s Disease, individual expectations of treatment, and how they make sense of risks. High quality care in clinical trials includes having sufficient time to make decisions such as harvesting eggs prior to treatments, and to understand the challenges of trial participation. There needs to be ongoing support for patients.
What the researchers think this means for people with IBD?
The researchers hope that this will mean that there will be improved support for people with Crohn’s Disease who are taking part in clinical trials.
Who's leading the research: Dr Joanne Cooper, Nottingham University Hospitals NHS Trust
Our funding: £55,000 over 18 months
Official title of the application: “Living with severe IBD: a qualitative exploration of experiences and expectations of Autologous Haematopoietic Stem-Cell Transplantation for Crohn's Disease.”
Tags: stem cells/clinical trials