Session PFD1 – Patient, Family and Donor Day – Post-transplant care
Sunday 14 March, 09:15-10:30, Auditorium 6
This year’s Patient and Family Donor Day consists of five sessions across Sunday morning and afternoon. The first session will open with a presentation by Dr Fiona Dignan, a consultant in haemato-oncology at Manchester University NHS Foundation Trust. She will discuss a new care pathway created to help patients return to something like normality after their stem cell transplant.
Many patients have physical or psychological late effects or long-term complications after a stem cell transplant and, in some cases, these are ongoing, severe and life-threatening. Dr Dignan will discuss a new care pathway created by an expert steering group of patients, healthcare professionals and National Health Service representatives working with the Anthony Nolan cancer charity. She explains: “We want to ensure that patients not only survive, rather, they should be enabled to return to active work, home and social lives.”
The services and support packages that are central to patients’ recovery include access to psychological support and specialist medical care for post-transplant complications such as oral medicine, dermatology, ophthalmology for graft-versus-host disease, fertility services and support from the full multidisciplinary team including a dietician, physiotherapist, and occupational therapist. It also includes practical support like advice on financial issues including benefits.
Dr Dignan concludes: “It is hoped that the new pathway will highlight the complex issues that patients face post-transplant and encourage commissioners and those who deliver care locally to develop services that meet all the complex needs that people can have after a transplant.”
The second part of the session is presented by John Murray, outgoing president of the EBMT Nurse’s Group based at The Christie Hospital NHS Foundation Trust, Manchester, UK. His talk is on the daily impact of GvHD on patients.
He will discuss the US National Institutes of Health (NIH) guidelines that were published back in 2006. These include six papers, with paper 5 discussing ancillary therapy and supportive care in chronic GvHD.
“Even though these guidelines are now 15 years old, they still have information that is relevant today,” John explains. “The guideline raises points about how to prevent problems that are associated with GvHD. They also give advice on how to treat complications that affect eyes, mouth and skin. The paper also talks about subjects that are less explored in outpatient clinics such as sexual dysfunction, psychological care and what rehabilitation patients should and can do. These are really important topics that are often overlooked in busy clinics that are more focussed on the clinical aspects of care.”
He explains: “I will discuss the journey that one of my patients has been on and show how someone has adapted their life following transplant and the development of severe chronic GvHD.”
A patient perspective will then be given by Mr Sam Williams, aged 25 years and based in Staffordshire, England. He works as Community Outreach and Patient Advocacy Lead for the Aplastic Anaemia Trust, the UK’s only charity which provides dedicated support to people with aplastic anaemia. He receives treatment at one of the UK’s largest transplant centres, the Queen Elizabeth Hospital in Birmingham. Sam says that “it is a true honour to be in a job supporting others with such a rare condition.”
Sam will speak briefly about his complex medical history, which – 18 years after his initial diagnosis of aplastic anaemia - led to him receiving an allogenic stem cell transplant from a matched unrelated donor.
He explains: “Living with chronic skin GvHD can present a number of different challenges, such as chronic pain and limited range of movement. Both of these factors of GvHD can at times have a detrimental impact on everyday life, and make it difficult to complete everyday tasks. At its worst point early on in my diagnosis, I even needed assistance with simple tasks such as bathing and dressing as a result of the limited range of movement in my joints, which can be humiliating at times. These effects also had an impact on my mental health, causing me to feel low in mood, anxious and isolated.”
Sam will discuss various treatments he has received for his chronic GvHD, the most significant being Extracorporeal Photopheresis (ECP). “One of the main benefits of Extracorporeal Photopheresis is that the treatment is not immunosuppressive in nature, meaning that unlike treatments which utilise immunosuppressant drugs such as Ciclosporin or Prednisolone, the treatment does not have an impact on the body’s ability to fight infections,” he explains.
However, he will also talk about the negative aspects of this therapy. In order to perform the treatment, good venous access is required. In Sam’s case, the skin GvHD meant his venous access was poor, necessitating the insertion of a vascular access catheter, which presents its own challenges including the risk of infection and the impact on his daily routine, with frequent line care and dressing changes being a requirement. He concludes: “One of the common side effects of Extracorporeal Photopheresis following treatment is fatigue, which can also have an impact on my daily life at times. It is also a slow-acting treatment, and it can take a long time to see improvements in the condition.”