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 and Professor Miriam Johnson
Funder: Yorkshire Cancer Research
Timeframe: September 2021 to January 2025
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.
In the EPOC study we conducted a review of shared decision-making in the management of MBO, and asked a panel of patients, caregivers and clinicians to feedback ideas about what is missing from the evidence. The findings of the review guided an interview study with patients and caregivers currently facing this condition and with the clinicians who are caring for them. In sixty in-depth interviews using visual methods, we have explored patients’ pathways from multiple perspectives and examined communication around decision-making in MBO. In the final stage of the project, the patients, caregivers and clinicians will meet with us to help design patient-centred information and on-line clinical training tools. The project aims to ensure effective patient-centred decision-making around treatment pathways for MBO by increasing patients’ understanding of their condition and treatment options, and increasing clinician’s understanding of patient and caregiver experiences of 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.
Title: WORKPLACE: Improving lung health at the WORKPLACE
Contacts: Dr Julie Walabyeki
Funder: Yorkshire Cancer Research
Timeframe: 2021 - 2026
More people are diagnosed with and die from lung cancer in Hull than any other place in Yorkshire. This is because Hull has the highest number of people who smoke in England. It is known that if lung cancer is diagnosed earlier, people are more likely to live for longer. This is also true for patients with lung cancer who stop smoking before treatment.
National statistics suggest that people within manual/routine occupations are likely to smoke more than those in other jobs and are therefore an important group to target. These workers include postal workers, receptionists, food, drink and tobacco process operatives, assemblers and construction workers for example. This study will further develop our work in improving lung health in Hull by extending a previous study into workplaces with mostly manual/routine employees. We gained experience in developing a media and community-based intervention to promote lung health and demonstrated an increased awareness of potential lung cancer symptoms. We will build on this by adapting the intervention for use in workplaces. We also seek to enhance our intervention that will increase awareness of potentially serious chest symptoms with initiatives that help people to stop smoking.
We would like to find out whether the workplace is a suitable environment to engage with employees regarding lung health, recognition of potentially serious chest symptoms and going to see the doctor and whether there is a suitable intervention that can be used at the workplace.
Aims
1. To find out whether using the workplace is a suitable environment to work with employees to:
a. Learn more about lung health.
b. Recognize potentially serious chest symptoms.
c. Encourage the employees to contact the doctor as soon as possible.
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: Exploring perceptions and experiences of NHS breast screening for socio-economically disadvantaged women in Yorkshire.
Funder: Yorkshire Cancer Research
Start date: October 2020
Supervisors: Dr Jo Cairns and Professor Una Macleod
Aim
The overall purpose of this research is to obtain an in-depth understanding of the lived experiences of women who live in socio-economically disadvantaged areas of Yorkshire and who experience multiple inequalities to gain an understanding of their experiences and perceptions of the NHS breast screening programme.
Summary
The NHS breast screening programme in the UK invites women aged 50-70 and without symptoms for breast screening every 3 years. Breast screening detects cancer in the earlier stages and improves the chances of survival. However, existing data shows that women who live in more disadvantaged communities have lower uptake of breast screening and access to breast screening is impacted by structural and systemic barriers as well as cultural differences, personal beliefs, and attitudes.
Despite decades of interventional research to improve the uptake of breast screening, we still see inequalities in breast screening. Therefore, this study looked to understand the nuances of everyday life for women living in socio-economically disadvantaged areas in order to understand what barriers they experience and how these can be overcome.
The research adopted a qualitative research design, comprising interviews and focus groups with 35 women, which is most suitable for providing biographical and contextual understanding. By incorporating the views of women into research, we can better comprehend how structural inequalities and fears of discrimination, marginalisation, and indignity impact breast screening uptake.
However, inequalities do not happen in isolation. People living in disadvantaged areas are also more likely to experience multiple inequalities. Therefore, a Qualitative Evidence Synthesis and meta-ethnography have been undertaken to explore the intersections of these inequalities with socio-economic disadvantage to strengthen our understanding of the impact on breast screening attendance.
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 April 2023
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
In the UK, 46,300 children are bereaved of a parent each year. We understand bereaved people need a supportive response from those around them. However, there is limited evidence to inform our understanding of this.
Following a systematic review to identify and synthesise the experiences of support for children and surviving parents following parental death, a qualitative study was undertaken. The project was carefully designed with the involvement of bereaved children and families who have experienced the death of a parent, a Young Persons Advisory Group that helped design and plan research with children, and professionals working in services offering bereavement support to families.
Using a constructivist grounded theory approach, in-depth interviews were conducted with children and their surviving parents after the death of a parent to explore their experiences and perspectives of support needs. Data were analysed using constant comparison, following Charmaz’s open, focused, and theoretical coding stages.
Systematic review findings highlighted the limited studies, including children and parents, that explored bereavement support. Seventeen parents and eleven of their children participated in online interviews. Theoretical coding of key categories from both interview data sets culminated in developing a substantive theory, ‘masking your grief - because you feel you have to’, articulating the behaviour patterns amongst children, surviving parents and those around them following their bereavement. Families gave examples of the supportive responses they received from each other and those within their networks. However, the response was not sustained.
‘Masking your grief - because you feel you have to’ is something children and parents do to protect each other and the people around them. It often happens because the immediate bereavement support dwindles as the people around them do not understand what they continue to go through.
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
Wray, A., Pickwell-Smith, B., Greenley, S., Pask, S., Bamidele, O., Wright, B., Murtagh, F. & Boland J, W. Parental death: a systematic review of support experiences and needs of children and parent survivors. BMJ Supportive & Palliative Care Published Online First: 16 November 2022. doi: 10.1136/spcare-2022-003793
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.
Student: Arwa Abdel Aal
PhD project: Evaluating the Impact of Delivery Methods on Socioeconomic Inequalities in Lung Cancer Screening Uptake and Health Inequality
Funder: Yorkshire Cancer Research
Supervisor: Professor Una Macleod
This PhD project aims to evaluate health inequalities in lung cancer screening across five different delivery models. Its primary aim is to gauge the inequalities in uptakes of lung cancer screening programmes by diverse socioeconomic groups and the consequent impact of such inequalities on overall health disparities. The research will conduct subgroup analyses using data from five distinct lung screening trials: the UK Lung Screening Trial (UKLS) and programmes in Liverpool, Manchester, Tameside, and Hull, considering variables such as age, the Indices of Multiple Deprivation (IMD), and gender.
The project's goals include evaluating the effect of a national rollout of these models through distributional cost-effectiveness analysis (DCEA). The overarching ambition is to analyse the effects of varying Lung Health Check (LHC) programme delivery models on population health inequalities.