The side-effects of treatments for head and neck cancer can have a devastating impact on a patient’s quality of life, affecting fundamental functions such as eating, drinking and talking.
Outcomes of treatment in the short- to medium-term are reasonably well-researched.
However in a small number of patients, these side-effects slowly develop many years later due to scarring caused by radiotherapy, often termed ‘late-effects’. This is after the patient has been discharged from the specialist team and therefore can go unrecognised until symptoms are significantly impacting on the patient’s physical health.
Diane Sellstrom – a speech and language therapist and head of department at Newcastle’s Freeman Hospital where she specialises in head and neck cancers – wished to explore pathways of care and decision-making for this complex and vulnerable group.
She was awarded a Practice Research Fellowship from the National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) North East and North Cumbria (NENC) to enable her to conduct a research project two days a week for a period of two years.
Research through partnership
The NIHR Applied Research Collaboration (ARC) for the North East and North Cumbria is a partnership that brings together six regional universities, health and social care providers, local authorities, the voluntary sector, community groups, members of the public and others.
The overall aim of the Collaboration is to tackle some of the major health and social care challenges facing the region today, focusing on seven key themes.
Diane is one of 16 Practice Research Fellows supported by the NIHR ARC North East and North Cumbria. The Practice Fellows provide a vital link between applied research and frontline practice, working between the ARC NENC and regional health and care providers to deliver high quality applied health research linked to priorities in their own fields of work.
Diane’s Fellowship will explore incidence, management and pathways for patients experiencing late side-effects of head and neck cancer treatment and aims to understand the impact of living with these symptoms. Her Fellowship is linked to the NIHR ARC NENC’s research theme of ‘Knowledge Mobilisation and Implementation Science (SKIM)’ – which focuses on using research and knowledge in innovative ways, to improve health and care across our region.
Diane says: “This is an exciting new opportunity for clinicians to engage in research and work collaboratively, tapping into an established network of clinical and academic experts”.
As a service leader, I am passionate about developing the NMAHP research agenda and encouraging staff to engage in research opportunities. This Fellowship will help me to better support those around me to do that.
Diane Sellstrom, head of the speech and language therapy department
This Fellowship allows Diane to build upon her 27 years of clinical knowledge during which time she has successfully secured funding for new and innovative developments, as well as a wealth of research experience having previously completed an NIHR MClinRes (Leadership) with Newcastle University.
She has contributed to several publications as lead and co-author, has been involved in multi-centre collaborations and has been invited to speak at national conferences.
Diane explains a bit more about what she hopes to achieve through her Fellowship, “I’m working on 3 workstreams in parallel:
- A scoping review to pull together what we know and don’t know about late effects of head and neck cancer treatment, specifically those related to eating and drinking difficulties.
- A mixed-methods study exploring the impact of living with late effects and mapping the symptoms experienced and healthcare journey back into the specialist team.
- A survey of practice among specialist SLTs in the UK regarding diagnosis and management of late effects.
“My aims centre around improving our understanding of these late effects (with a focus on those related to eating/drinking) and identification of unmet needs. Some patients only re-enter the system following emergency admission with significant swallowing difficulties, weight loss, chest co-morbidities and/or breathing difficulties. Earlier intervention could potentially prevent such admissions and enable patients to maintain their quality of life for longer.
“Working collaboratively with the SKIM theme in the ARC NENC will ensure the findings of these projects reach maximal potential impact.”
Patient involvement is key
“Another invaluable aspect has been the input from patients in co-designing the research project” says Diane. “Their input has ensured the questions I am asking are relevant and the methods used to find the answers are appropriate.”
Jennifer Dunbar has been involved as a patient advisor and had this to say about Diane’s research:
“As a survivor of head and neck cancer I have struggled with various side effects caused by my treatment since the very beginning. Six years down the line I find more are developing and those side effects I already had are getting worse and together they have a huge impact on my quality of life.
“It is so important to me to help with this research piece, as I have found it difficult to get answers and guidance for my own challenges, and often have to spend time working through various options with my multi-disciplinary team to find answers.
“If, by sharing my experiences with the research team, I can help them help others then it is the least I can do to repay all the support I have had.”
A research journey full of mentorship and support
Diane says that there are a number of people and networks who have supported her so far in obtaining this fellowship.
“The SKIM theme lead and deputy theme lead were an invaluable support in helping me develop my application for the secondment. I am fortunate enough to have an extremely experienced supervisory team spanning Northumbria, Newcastle and Liverpool Universities as well as the Newcastle Hospitals.
“One of those is Jo Patterson who is Professor of Speech and Language Therapy at Liverpool Head and neck Centre and Liverpool University. I worked alongside Jo in Sunderland Royal Hospital for many years where she provided opportunities for me to engage in research activity and gently nurtured my interests and ideas. She has been a fantastic advocate for so many Speech and Language Therapists and other Allied Health Professionals in developing the clinical-academic pathway.”
Of Diane’s research Professor Patterson said: “Diane is a true clinical academic – being close to care delivery, her research is fully informed by what matters to patients.
“This has driven the quality and impact of her work – influencing clinical services and inspiring other clinicians. Being part of her supervisory team is both stimulating and rewarding. Her fellowship has been an excellent investment for future healthcare.”
Newcastle’s NMAHP research support
Diane adds “Working in the highly research-active head and neck cancer centre at the Freeman Hospital alongside supportive ENT and Oncology Consultants has also been immensely valuable.
“But it is also important to recognise the fantastic peer support we have at the Newcastle Hospitals and the region among the NMAHP community. Informal conversations with peers often provide the best insights and I would strongly recommend developing your network as early as possible.”
Ewan Dick, Associate Director of Allied Health Professionals and Therapy Services added: “Diane’s extensive clinical experience and research skills are playing a vital role in supporting patients experiencing late side-effects of head and neck cancer treatment.
“Her research and translating this into how care and support can be improved demonstrates the value of AHPs placing the patient at the heart, to inform and understand the impact of living with these symptoms, months and years after initial treatment. We know that Diane will inspire and support many other AHP colleagues to engage in clinical research.”
NIHR ARC NENC Fellowships
The NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC) is a region-wide and responsive network of clinicians, public health and social care practitioners, commissioners, voluntary sector providers, researchers, and other professionals – all focussed on applied research and innovation to prevent illness, improve care, promote health and reduce health inequalities.
It is funded by the National Institute for Health and Care Research (NIHR) and is one of 15 ARCs across England.
To find out more about their work and how you can get involved visit the NIHR ARC NENC website.
The NIHR is the research partner of the NHS, public health and social care. It funds, enables and delivers world-leading health and social care research that improves people’s health and wellbeing and promotes economic growth.
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