Title: AT RISK: Attitudes Towards Risk stratified Bowel Screening
Contact: Dr Jo Cairns (PI), Professor Una Macleod (Co-I), Professor David Weller (Co-I)
Funder: Yorkshire Cancer Research
Time frame: October 2021 to July 2022
The aim of this project is to explore attitudes towards risk stratified bowel cancer screening among members of the public and healthcare professionals/stakeholders.
There have been growing calls in the UK to adapt national cancer screening programmes to take account of people’s personal risk of developing cancer. Compared to cervical and breast screening, bowel screening has received less attention.
There is a lack of research on the impact of changing the existing bowel screening programme to a personalised approach (e.g. those at higher risk would be screened more frequently). We found limited research around attitudes towards such an approach. For instance, only one UK-based study examined the impact of receiving personalised risk scores for bowel cancer and this showed that it caused some distress. We also found that healthcare professionals did not always agree with risk-based recommendations. If risk-based bowel screening is to be implemented, we need to ensure it is both acceptable and feasible.
In this ten-month project, we will investigate how to make this approach acceptable to inform a future project looking at how to put this into practice.
Outputs and resources
Comic: Did you know your poo could save you?
Title: CANcer BEhavioural Nutrition and Exercise Feasibility Trial (CanBenefit II)
Contact: Dr Cindy Forbes and Dr Flavia Swan
Funder: Yorkshire Cancer Research
Time frame: 2020 to 2022
People with cancer affecting the lungs tend to be older and frailer compared to people with other cancers. As a result, they may have poorer quality of life and are less able to tolerate treatments for their cancer, such as chemotherapy. Research to date show that physical activity and nutrition support helps people with cancer, but not many older people are included in these studies. We aim to develop and test a physical activity and nutrition treatment to help older people with lung cancer have best quality of life.
The purpose of the project is to test the feasibility and acceptability of a tailored physical activity and nutrition programme to support best quality of life and help older people with lung cancer tolerate anti-cancer treatments. The study will invite older people with lung cancer who offered anti-cancer treatment to take part in a 12 week home based individualised wellbeing (physical activity and nutrition) programme. The study will recruit from two sites in Yorkshire; Castle Hill Hospital in Hull, and York Hospital.
Title: DAMPen-D study: Improving the Detection, Assessment, Management, and Prevention of Delirium in Specialist Palliative Care Units (SPCUs)
Contact: Professor Miriam Johnson and Dr Mark Pearson
Funder: Yorkshire Cancer Research
Time frame: February 2021 to February 2023
The purpose of the study is to assess the feasibility of using an implementation strategy to enable guideline-adherent delirium care in hospices with the aim of reducing patient days with delirium.
We will conduct the following:
- Co-design a flexible implementation strategy, drawing on the Creating Learning Environments for Collaborative Care (CLECC), for use in Specialist Palliative Care Units (CLECC-SPCU)
- Explore the feasibility of a future effectiveness evaluation study of CLECC-SPCU supported delirium care on clinical outcomes
- Assess the acceptability and flexibility of the co-designed CLECC-SPCU in three SPCUs
Title: Exploring pathways to optimise care in malignant bowel obstruction (The EPOC Study)
Contact: Dr Alison Bravington
Funder: Yorkshire Cancer Research
Timeframe: September 2021 to September 2024
About one in six people with cancer experience blockage of their intestines by a tumour (malignant bowel obstruction, or MBO). This stops people eating and drinking, causing severe pain, nausea and vomiting. Making decisions about treatment can be difficult – there are no nationally agreed guidelines. The recent RAMBO study at the Wolfson Palliative Care Research Centre also showed that people experiencing MBO often feel uncertain about treatment pathways and goals of care.
The EPOC study will begin by conducting a review of existing evidence, and building a panel of patients, caregivers and clinicians to discuss what we find out. These consultations will guide an interview study with patients and caregivers currently facing this condition and the clinicians who are caring for them. In-depth interviews using visual methods will explore patients’ pathways and examine how they might take part in decision-making, and how to decide which treatment would be most beneficial. In the final stage of the project, the patients, caregivers and clinicians from our review panel will meet with us again to help design patient-centred information and on-line clinical training tools. These interventions will explore how to ensure good decision-making in treatment pathways for MBO, how best to share this decision-making with patients, and how to achieve the best outcomes for people with MBO.
Title: Experiences of cancer diagnostic pathways and care during the Covid-19 pandemic (PRIORITY study)
Contact: Professor Una Macleod and Dr Olufikayo Bamidele
Funder: Yorkshire Cancer Research
Time frame: September 2020 to September 2022
The global coronavirus (COVID-19) outbreak has led to disruptions in cancer care services and resulted in a significant drop in urgent cancer referrals and treatment among patients in the United Kingdom. The implications these diagnostic and treatment delays have for the physical, mental, emotional and social wellbeing of cancer patients and their caregivers are currently not well understood. Our study aims to address this research gap by exploring experiences of cancer diagnosis and care during the COVID-19 pandemic.
We will interview adult patients diagnosed with cancer since January 2020 and receiving care within the Yorkshire region, their informal caregivers and healthcare professionals involved in cancer diagnosis and care within Yorkshire.
Insights gleaned from this study will be used to inform policy and practice for improved patients’ experiences and cancer care during immediate and future pandemics
For further information, email the contact above or: priority@hyms.ac.uk
Title: Exploring GP referral behavior for serious non-specific symptoms (SNSS) where cancer is suspected.
Contact: Dr Charlotte Kelly
Funder: York and Scarborough Teaching Hospitals NHS Trust
Patients who attend a GP with serious but nonspecific symptoms (SNSS) where cancer is suspected do not currently meet the criteria for site specific urgent referral for cancer.
The consequences of this are that they are more likely to have multiple healthcare visits and longer times to diagnosis than patients presenting with site specific symptoms.
This study will explore the GP referral behavior and the use of a Rapid Diagnostic Centre Service referral pathway for these patients through a series of interviews with GPs.
Title: Is travel burden associated with differences in health outcomes for patents diagnosed with breast, lung, prostate, colorectal or oral cancer?
Contact: Dr Charlotte Kelly
Funder: Yorkshire Cancer Research
Timeframe: June 2023 to June 2026
The aim of this project is to explore whether people diagnosed with cancer living further from a healthcare provider (e.g. GP, hospital) have differences in their outcomes.
We are exploring differences in survival rates, whether a person is diagnosed at a late or early stage of cancer and whether there are any differences in the treatment that they receive once they are diagnosed.
We are also wanting to know whether this differs for people who are living in a coastal area compared to a non-coastal area.
To do this we have applied to NHS England to have access to the National Disease Registration Service (cancer registry) data.
We will only have access to de-personalised data. It will be kept in a secure environment with strict controls over who is able to access it. After the study, all records will be securely destroyed.
Download the Privacy Notice for this study (PDF)
Title: Palliative care - not just at the end of life
Contact: Professor Miriam Johnson and Dr Maureen Twiddy
Funder: Prostate Cancer UK
Timeframe: January to December 2018
The purpose of this project was to develop an educational resource for staff caring for men with prostate cancer and their families.
Men living with prostate cancer and their family caregivers have many unmet supportive and palliative care needs. However, most think of palliative care as something for the last days of life only so miss out on support. Our educational resource uses national survey data and patient and carer interviews to help staff identify, assess and manage these unmet needs.
Outputs
Educational resource hosted on Prostate Cancer UK website (available shortly)
2 publications in peer reviewed journals (in manuscript)
Title: Phone App Study: Capturing cancer patient travel burden
Contacts: Dr Charlotte Kelly (PI), Warren Viant, Professor Grant Abt, Professor Una Macleod, and Helen Roberts
Funder: Yorkshire Cancer Research
Timeframe: October 2021 to October 2022
The aim of the study is to develop a mobile phone app that can collect patients’ experiences of journeying to and from hospital. The study will produce a mobile phone app that can be applied in future research with patients attending healthcare settings.
Travelling to hospital can represent a significant time commitment and burden for cancer patients. Difficult journeys have the potential to make patients even more unwell through being uncomfortable and causing stress and anxiety.
Studies have previously used the proxy measure of travel time or distance as the measure of travel burden. This does not capture the experiences of patients when they are travelling and is likely to be unrepresentative of travel times, as it is calculated based on estimated travel times between home and hospital by car.
This study aims to develop a phone app that will collect representative travel times and distances using GPS tracking data and allow patients to submit a voice recording and responses to questions about their journey. The aim is to have an app that will provide a clearer picture of the travel burden of cancer patients accessing treatment, whilst minimising the burden of patients providing the information.
Visit the study website Patient Journeys
Outputs
The study will be producing an iPhone app that can be downloaded from the Apple App Store.
Student: Jordan Curry
PhD project: Effect of physical activity on quality of life in cancer survivorship: an online delivered, tailored physical activity programme.
Funder: Yorkshire Cancer Research
Start date: October 2019
Supervisors: Dr Cindy Forbes (primary) and Dr Mark Pearson (secondary)
Aim
To develop and assess the feasibility of an online web-based tailored exercise program for lung cancer survivors.
Summary
Within the last 40 years lung cancer has shown little improvement with only 5% of individuals surviving more than 10 years.
Developing an online evidence-based tailored exercise program could improve functional capacity and quality of life while overcoming exercise related barriers within lung cancer survivors.
Student: Emily Lunn
PhD project: A sociological examination of socio-economic inequalities in breast screening experiences
Funder: Yorkshire Cancer Research
Start date: October 2020
Supervisors: Dr Jo Cairns and Professor Una Macleod
Aim
This research aims to understand why we see lower uptake of breast screening among women from more deprived areas, and how we can improve this situation by making policy and practice recommendations.
Summary
Breast screening rates for women from the most deprived areas are significantly lower than those from the least deprived. By exploring inequalities in breast screening uptake through qualitative research, this study will provide in-depth understandings of screening barriers and facilitators and test acceptability of interventions to improve uptake.
Student: Michael Patterson
PhD project: Parenteral nutrition and venting gastrostomy for the management of inoperable malignant bowel obstruction.
Funder: Yorkshire Cancer Research
Start date: September 2019
Supervisors: Professor Miriam Johnson and Professor Michael Lind
Aim
The overarching aim of this thesis is to evaluate the current practice of venting gastrostomy and parenteral nutrition in inoperable malignant bowel obstruction regarding benefits and harms, and the views and experiences of patients, their family carers, and clinicians.
Summary
To meet the aims of the thesis firstly the current evidence for venting gastrostomy and parenteral nutrition will investigated. Then the current management for patients with inoperable malignant bowel obstruction will be observed. Finally the views of experiences of patients, their carers, and clinicians with regards to benefits and harms of venting gastrostomy and parenteral nutrition will be explored.
Student: Rebecca Price
PhD project: Exploring access to specialist cancer centres for patients in coastal areas, an assessment of the psychosocial, socioeconomic, psychological and health implications
Funder: Yorkshire Cancer Research
Start date: October 2020
Supervisors: Dr Charlotte Kelly (primary) and Professor Una Macleod (secondary)
Aim
To explore access to specialist cancer centres for patients in coastal areas, through an assessment of the psychosocial, socioeconomic, psychological and health outcomes.
Summary
Since the development of specialist cancer centres, the need to travel has become an increasing burden for some patients.
Using both qualitative and quantitative methods, this research will explore the travel experiences of patients undergoing cancer treatments, particularly in coastal communities, along with the psychosocial, socioeconomic and health implications.
Student: Alexandra Wray
PhD project: Supporting families when a parent has died
Funder: Yorkshire Cancer Research
Time frame: July 2019 to November 2022
Supervisors: Dr Jason Boland, Professor Fliss Murtagh and Dr Clare Whitfield
Aim
The aim of this study is to explore how children and families can best support each other following the death of a parent and to understand how those around them can offer a supportive response
Summary
When a child or young person loses a parent, it is often devastating. Children and their family need support from the people around them.
It can be hard for children and families to know how to help each other. It can also be difficult for professionals and those around a bereaved family to know how best to support them.
This project aims to find out what children and their families need at this time and how they can best be supported after a parent has died. The project has been carefully designed with the involvement of bereaved children and families who have experienced the death of a parent, a Young Persons Advisory Group who help design and plan research with children, and professionals working in services offering bereavement support to families.
This project will examine the experiences of a sample of about 30 children and parents who have experienced the death of a parent. Children and their parent will be invited to a virtual or face-to-face interview with the researcher where they will be asked about the death of the parent, what they needed and how they were helped by each other and the people around them.
Children and families will be asked if they would like to look at the findings. If they want, they can help plan how and where the findings from this project should be presented and how the findings can be used to help other children and families when a parent has died.
Recruitment opened for the study in September 2021 and is anticipated to finish mid 2022.
Outputs and resources
Wray, A. (2021) Alex’s blog: a nurse’s honest experience of navigating a PhD. British Journal of Child Health. Published Online: 12 Aug 2021.
Wray A, Seymour J, Greenley S, Boland, J (2022) Parental terminal cancer and dependent children: a systematic review. BMJ Supportive & Palliative Care Published Online First: 28 January 2022. doi: 10.1136/bmjspcare-2021-003094
Student: Dr Benjamin Pickwell-Smith
PhD project: Socio-economic inequalities in the diagnosis and treatment of bowel and ovarian cancer
Funder: Yorkshire Cancer Research
Time frame: November 2021 to November 2026
Supervisor: Professor Una Macleod
Bowel cancer is the fourth most common cancer in the United Kingdom (UK) with around 110 new cases diagnosed every day. Ovarian cancer is the sixth most common cancer affecting women in the UK, with around 20 new cases diagnosed every day.
Research has shown that cancer survival (the percentage of people still alive after a particular amount of time following a diagnosis of cancer) is lower for patients living in less affluent areas of England. The reasons for this are not fully understood. This research study aims to look for inequalities (differences) and their causes in cancer care. This might help explain what we can do to reduce these inequalities.
We will explore whether patients diagnosed with bowel or ovarian cancer living in less affluent areas:
- Experience more delays in reaching a diagnosis, compared with other patients
- Receive different treatments, compared with other patients
This project will use cancer registration data which is routinely collected by the National Cancer Registration and Analysis Service (the cancer registry in England, part of Public Health England). We will seek to access cancer registration data about all patients living in England who were diagnosed with bowel or ovarian cancer between 2016- 2017. This data will include details about each patient’s:
- Characteristics (such as their age at diagnosis, presence of other medical conditions, or their ethnicity)
- Their cancer (such as how advanced it is)
- Information about their treatment and how they came to be diagnosed.
We will look at the extent to which any differences in diagnostic or treatment times, or in the treatments received, can be explained by patient demographics such as age, number of medical conditions and the affluence of their area of residence.
We will only have access to de-personalised data. It will be kept in a secure environment with strict controls over who is able to access it. After the study, all records will be securely destroyed.
Download the Privacy Notice for the project (PDF)
Student: Dr Gordon McKenzie
PhD project: A complex intervention study evaluating the effect of a digitalised, patient-centred comprehensive geriatric assessment on clinical decision making and patient experience when utilised by a head and neck cancer multidisciplinary team
Funder: Yorkshire Cancer Research
Timeframe: Expected completion early 2021
This project will develop a website and mobile app to enable older people with head and neck cancer to get a complete assessment of their day to day functioning and overall health.
We will develop, validate and implement a digitalised, cross-platform and integrated web and mobile service for undertaking comprehensive geriatric assessment in head and neck cancer patients.
Student: Alex Bullock
PhD project: Production of a single validated screening tool for the identification of malnutrition, cachexia and sarcopenia in older people with cancer
Funder: Yorkshire Cancer Research
Timeframe: September 2018 to September 2021
Supervisor: Professor Miriam Johnson
Weight loss is common in people with cancer and is difficult to assess. This research aims to produce a screening tool to help medical teams assess older cancer patients more effectively, to identify issues regarding poor nutrition and causes of weight loss.
This research will develop a clinical tool that can identify the elements of malnutrition, cachexia and sarcopenia within a single screening tool. This will enable professionals identify the best treatment to manage these symptoms.