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Patient focused research

Clinical_Xing Zhang_Portrait_RB_July 9_173

What is patient focused research?

We know that recovering from a stem cell transplant can be a long and difficult journey for many of our patients. Some of these challenges are a result of the transplant itself, but others arise because improvements need to be made within the healthcare system.

Our patient focused research aims to give us a better understanding of these challenges and the impact they have on our patients so that we can find suitable solutions. We also share this knowledge with the wider healthcare community to ensure every patient receives the best possible care.

What do our researchers do?

Through our network of clinical nurse specialists (CNSs) and clinical psychologists, we closely assess the needs of our patients. We do this by collecting demographic data and carrying out patient questionnaires to measure how effective healthcare services and our own initiatives are. We consider all aspects of recovery, from the management of early side-effects to establishing late effects clinics, vaccinations and palliative care.

We also work closely with other healthcare professionals to better understand their perceptions of the healthcare they provide, the challenges they face and how we can make improvements.

This approach means that any recommendations we make to the clinical community are backed up by factual evidence and therefore will be more impactful. It gives our medical experts more power when it comes to changing standard clinical practices.

What impact will this have for stem cell transplant patients?

It’s only through continual evaluation and analysis that we can be sure the services we provide are meeting the needs of our patients. If one of our services is not working as well as it should be, we want to be able to know why and change it as soon as possible.

All our research findings will be shared with the transplant community so that we can improve the standard of care for our patients throughout their recovery.

Group leader profile

Chiara DeBiase

Chiara DeBiase – Director of Patient Services

Chiara De Biase is the Director of Patient Services at Anthony Nolan and leads the Patient Services team who are responsible for the production and development of all our information and support services.

Before joining Anthony Nolan, Chiara worked at King’s College Hospital as the Manager of the Macmillan Information and Support Centre. Here she developed a love of research and a strong appreciation of the value of investing in qualitative research that is co-designed and patient led.

It was her NHS career before joining the third sector that really established her passion and drive for improving patient experience and quality of life before, during and after a diagnosis of cancer. Chiara was a Highly Specialist Physiotherapist in Cancer and Palliative Care, working at St. Bartholomew’s Hospital with a special interest in the treatment and rehabilitation of HSCT recipients.

Chiara and the team are now delivering a new area of Anthony Nolan research that focusses on the patient in a way that is meaningful to them throughout their transplant journey.

Team members

  • Hayley Leonard – Lead Nurse
  • Aaron Twitchen – Research coordinator

Get involved in our work

If you are a healthcare professional in the field of hematology and transplant care, and you’re interested in helping with our research, please do get in touch to discuss how we can work together.

Current research projects

  • Late Effects Practice Guidelines (LEPG)

The provision of a consistent and equitable late effects service is important for all patients after their stem cell transplant. Health care professionals that deliver late effects services follow international clinical guidelines to try and achieve this. However, in practice, implementing some of the guidelines can be challenging and this has resulted in inconsistencies across the UK.

We initiated a working group of clinical nurse specialists who work in late effects to look at how we can align the clinical guidelines to practice and find practical solutions. We have begun by focusing on four areas: the post-transplant vaccination program, cognition, sexual dysfunction and recovery summaries. Through literature reviews, surveys and interviews with healthcare professionals and patients we have begun gathering evidence.

This will support the development of guidelines and tools that will improve patients experience and delivery of these services. An example of this is the introduction of a vaccination passport. As an ongoing project, secondary cancer screening will be explored next.

  • Palliative care

Despite everyone’s best efforts, some transplants are unsuccessful and other curative treatments are not a suitable option. At this very difficult time, it’s vitally important that both patients and their families receive the information and support they need from their medical team to make decisions about future care.

In our experience, healthcare professionals find it understandably difficult to know how and when to start talking about palliative and end of life care with their patients. We are now conducting an online survey of UK physicians providing care to stem cell transplant patients to highlight the barriers that prevent patient referrals to palliative care services. We are also collecting demographic data to see if it influences the availability of these services. Our findings will then be compared to a similar study carried out in the US in 2018.

This work will give us a better understanding of transplant physician’s attitudes and perceptions of palliative care and identify potential gaps in the healthcare services they provide. Where problems do exist, training programmes and other initiatives will then be created and monitored to help resolve them.

  • Socio-economics impact on Quality of Life for SCT (SEQOL)

At Anthony Nolan we believe in the equality of health care and that factors such as where a patient lives, their ethnic background or social standing should not affect their recovery.

For the SEQOL study we are using an internationally recognised survey tool called PROMIS 29 that considers aspects of both physical and mental wellbeing to measure a patient’s quality of life. This will be done at various time points up to five years post-transplant. PROMIS 29 has been validated by numerous similar studies, meaning we can directly compare our findings to other organisation around the world.

SEQUOL will give us a better understanding of how an individual’s circumstances might affect the likelihood of them encountering difficulties during their recovery. This help us to identify which patients could benefit from additional support and more specialised services. Collecting data on this will also reveal potential gaps or inequalities in how health care is provided to our patients throughout the UK. This source of accurate and reliable evidence can then be used by our policy and public affairs team to lobby the relevant government and health care bodies for better support and investment in services.

  • The impact of COVID-19

The COVID-19 pandemic has affected every aspect of our daily lives, including how stem cell transplant patients are supported during their recovery. We want to improve our understanding of how healthcare has been affected during this time from the perspectives of health care professionals that have continued to provide this support.

Through a series of interviews with a range of healthcare professionals we are exploring their experiences and will gain insight into some of the challenges, success and solutions that were initiated. The first set of interviews have been completed and we will repeat them in six months and a years' time to follow the development of long-term changes.

Analysis of the first interviews identified three themes, the introduction of telemedicine, teamwork and support and communication. Results will be used to influence service developments nationally by reflecting and sharing positive examples of changes, whilst also raising awareness of areas of practice change that cause concern. The report will also be shared to generate discussion and encourage a collaborative approach to address the challenges and find solutions.

Category
Research