Life after a stem cell transplant: research on recovery and support
Donor support image: Rob Overmeer
What is life like after a stem cell transplant? Haematologist Jennifer Tjon and nurse practitioner Kyra Oosterink from the LUMC are studying how patients experience recovery and what support they need.
A stem cell transplant can be life-saving for people with severe blood disorders. But for many patients, it marks the beginning of a new and uncertain recovery period. The research team aims to understand the impact on patients’ everyday lives, so that care can be better tailored to their needs.
The LUMC project team: (l-r in the photo above) Kyra Oosterink MSc, Dr Jennifer Tjon, Dr Stijn Halkes and Prof. Janneke de Man-van Ginkel. De Man-van Ginkel is Professor of Nursing Science and studies the impact of disease on patients’ lives. Halkes is a haematologist who focuses on research into allogeneic stem cell transplantation.
A new immune system
Allogeneic stem cell transplants use donor stem cells to replace the patient’s own immune system. They are used to treat certain forms of leukaemia, in which the immune system does not function properly. ‘Put simply, we replace the faulty immune system with someone else’s’, Tjon explains. ‘This new immune system can fight bacteria and viruses, and can also recognise and eliminate any remaining cancer cells.’
The transplant procedure itself is less invasive than it may sound. ‘Transplanting the stem cells is actually comparable to a blood transfusion’, says Tjon. ‘The real challenge lies in the treatment beforehand and the recovery afterwards.’ Before the transplant, patients undergo intensive chemotherapy and immunotherapy. Their immune system is suppressed, and space is created in the bone marrow for the donor stem cells to engraft and produce new blood cells.
Surviving is not enough
The treatment has improved considerably in recent years, and more patients are surviving these complex yet vital stem cell transplants. This makes it increasingly important to consider how patients fare in the longer term.
In follow-up consultations, Oosterink sees that recovery often takes longer than patients anticipate. ‘Many patients continue to experience symptoms’, she says. ‘Fatigue, concentration problems and pain. Many also find they are less resilient.’
Some effects are less visible but no less challenging. ‘People have less energy, which affects their social lives. Relationships come under strain, some friendships fade and returning to work can be difficult’, she says. ‘All of this affects how people experience life after treatment.’
What do patients experience?
To better understand patients’ experiences, the Haematology Department has launched the QUARTz project. This research follows patients for several years after a stem cell transplant. A national study of patients undergoing transplantation for acute lymphoblastic leukaemia (ALL) – in which all the university medical centres in the Netherlands are collaborating – has already started. The study will soon be expanded to include patients with other blood disorders who have undergone a stem cell transplant.
Participants complete questionnaires at various points about their health and everyday functioning. These cover not only physical symptoms, but also psychological and social aspects.
The researchers worked with Hematon patient organisation to develop the study. Representatives from the organisation provided input for the questionnaires. ‘They include questions about fatigue, pain, anxiety and depression, as well as about relationships with family and friends.’
‘We ask whether people regret having the transplant’
Sensitive topics are not avoided. ‘We ask whether people regret having the transplant’, says Oosterink. ‘That may sound confronting, but it provides valuable insight into how patients experience their recovery.’
By asking these questions at different stages – at the start of the study and again after one, three and five years – the researchers hope to gain a clearer picture of the course of recovery. ‘We often say that recovery takes about a year’, says Oosterink. ‘But what does that actually mean? When do certain problems arise? That’s something we don’t fully understand.’
The LUMC project team: (l-r) Kyra Oosterink MSc, Dr Jennifer Tjon, Dr Stijn Halkes and Prof. Janneke de Man-van Ginkel. De Man-van Ginkel is Professor of Nursing Science and studies the impact of disease on patients’ lives. Halkes is a haematologist who focuses on research into allogeneic stem cell transplantation.
From ad hoc support to a care pathway
The research findings should ultimately lead to a more structured care pathway for patients. At present, support is often provided only when patients ask for it. ‘We may refer them to a physiotherapist, occupational therapist or psychologist’, says Tjon. ‘But at the moment, this is fairly ad hoc.’
Not all patients speak up when they experience difficulties. As a result, whether support is offered can depend on the follow-up consultation – or even on the individual healthcare professional. The QUARTz study aims to identify what support patients need, and when.
‘It’s about managing expectations.’
‘It may be that patients benefit most from physiotherapy three months after the transplant’, says Oosterink. ‘And that psychological support becomes more important later on in the recovery process.’
These insights could help develop a clearer care pathway in the future, in which different forms of support are a standard part of aftercare. ‘It’s also about managing expectations’, says Tjon. ‘If you can explain what patients can broadly expect during their recovery, that helps them to prepare.’
Shift in healthcare
According to the researchers, this study reflects a broader shift in medicine. ‘In the past, the primary focus was on cure’, says Tjon. ‘If a patient survived the treatment, the goal had been achieved.’ Oosterink agrees. ‘I remember a predecessor telling patients that complications and side effects were the price you had to pay to stay alive.’
‘We are increasingly recognising that it’s not enough for patients to survive – they also need a good quality of life’, says Oosterink. ‘That means looking differently at care.’ They see studies on quality of life as just as important as research into new treatments. ‘We can cure more and more patients’, says Tjon. ‘The next step is to ensure that they can resume their lives afterwards.’
This research has been made possible through donations via the Leiden University Funds of three couples: Moulijn-van Lier, Munting-Fernandez Niemann and Pauwels-Plaizier. Such funding is crucial because it can be difficult to secure funding from traditional funding bodies for research on quality of life after cancer. Private funding enables researchers to explore questions that matter just as much to patients: what life is like after intensive treatment, and how recovery can be improved.
This article was published in the latest edition of LUF Magazine.