Workstream 1: Early Diagnosis

Pathway Study

What are the differences between affluent and deprived patients, and the factors that prompt attendance to their doctor prior to a diagnosis of lung or head and neck cancer?

 

What are the pathways from symptom awareness to diagnosis and treatment?

 

Public understanding of symptoms study – Awareness of Cancer Study (ACeS)

How do lay understandings of cancer signs and symptoms impact on help- seeking practises?

 

How are the symptoms that could signal lung and head and neck cancers understood in areas of socio-economic deprivat

Workstream 2: Advanced Disease

Access to Palliative Care

What does the literature tell us about the access to specialist palliative care services by patients from disadvantaged areas?

 

What evidence is there of inequalities in access to specialist palliative care, or to the palliative care approach?

 

NAT: PD-C

 

We are developing and testing a simple tool for GPs and community nurses to use when assessing palliative care needs of people with cancer.

 

Reducing Unplanned Hospital

Admissions Study

We are conducting three studies which will feed into the development of a complex intervention to prevent avoidable admissions at the end of life.

Outcomes

The outcomes of people who have cancer are linked to many factors; including finances, where they live, gender and age. For all cancers combined, NHS Hull has more men and women getting and dying from cancer than anywhere else in the UK. In particular lung cancer rates for both men and women are higher in Hull compared to the rest of Humber area, and patients with cancer in Hull die earlier than elsewhere in England. Cancer Studies – Yorkshire (CS-Y) is a five year Yorkshire Cancer Research funded programme of research that aims to understand and then reduce social inequalities in healthcare for people with cancer in East Yorkshire. There are two workstreams: ‘Early diagnosis’ and ‘Advanced disease’. Within these workstreams are five studies.

The research team includes Professor Una Macleod,Professor Miriam JohnsonDr Hong ChenDr Trish GreenDr Julie WalabyekiDr Osaretin OviasuMiss Sarah SmithMrs Nicola BroadleyMr Tom Hammond

Workstream 1

Pathway study

We aim to understand how people with lung, and head and neck cancer in East Yorkshire experience health care from when they first notice a problem, to going to see the doctor, through to being diagnosed, and whether this is affected by their social and financial situation. We will study this in ways which will provide information that is useful to NHS services in the UK as a whole.

There are three parts to the work. 

  1. We will recruit patients newly diagnosed with lung cancer or head and neck cancer (mouth, throat, voice box) and ask them to complete a survey.
  2. We will look at patients medical records to examine what happened before they were diagnosed with a cancer; e.g. the number of times they saw their GP.
  3. Some patients will then be invited to be interviewed in more detail to help us understand their experiences on their route to diagnosis more fully.

This study started in November 2013.

Public understanding of symptoms study – Awareness of Cancer Study (ACeS)
We will conduct focus groups in community settings in Hull. These are discussion groups where people talk about a subject of shared importance. The aim of these groups is to improve our knowledge of the public’s perceptions of lung cancer and head and neck cancers, e.g. their understanding of who is most at risk of developing these diseases, and their awareness of cancer symptoms.

This study began in Spring 2015.

Workstream 2

Access to palliative care

Not everyone has equal access to palliative care, which aims to improve the quality of life for people with serious illness. People in this situation often have a variety of needs which might include managing pain or receiving psychological/social/spiritual support. Some people, depending on their age, sex, diagnosis, ethnicity or level of wealth have unequal access to palliative care. There is currently no record of use of palliative care services linked to these data about people with cancer in UK and whether this affects their place of death. We will explore access to palliative care.

This work has two parts.

  1. We will look at previous studies that examined people’s access to palliative care. We want to see if there is a link between poverty and access to palliative care; if this affects whether the people were more likely to die in hospital, at home or in a hospice; and if there is a link between age, sex, ethnicity and access to palliative care and place of death.
  2. We will examine records of referrals to and deaths in hospices in Humberside and the North East Yorkshire coast to look for any differences within these areas.

This study started in August 2013. 

Needs Assessment Tool: Progressive Disease Cancer (NAT: PD-C)
People with cancer often have a variety of care needs. However, care is not provided in the same way for everyone. A needs assessment tool developed in Australia, the Needs Assessment Tool: Progressive Disease Cancer (NAT: PD-C), will be adapted to be used in GP surgeries or on home visits in the UK. The tool can help doctors and nurses identify the effect that cancer may have on patients and their carers, and help doctors and nurses to decide how best to help patients and families with available resources. We will look to see if the NAT: PD-C correctly identifies patients’ and carers’ concerns and needs. 

The study has two parts:

  1. We will adapt the NAT: PD-C for use in UK GP practices.
  2. We will test the adapted NAT: PD-C to see whether it gives reliable results and whether the results reflect patients’ real concerns

This study started in December 2013.

Reducing Unplanned Hospital Admissions Study (RUHAS)
Not all emergency hospital admissions are necessary or appropriate for people living with cancer, especially when they are already approaching the end of life. We hope to develop a complex intervention to reduce such admissions in East Yorkshire. In order to identify the key components of an appropriate intervention, we want to understand what causes emergency admissions, what has been done and what can be done to reduce them locally and in general. 

The study has three parts:

1. Patient Study (RUHAS- Pt): We will interview 20 cancer patients who have recently had an unplanned admission and/or their carers, to explore their experiences and their perceptions of the factors that contributed to unplanned admission(s).

2. Systematic Review (RUHAS-SR): We intend to conduct a systematic literature review to identify evidence on interventions that have been tested and have successfully reduced unplanned hospital admissions of adults with cancer, and to identify evidence on the factors associated with unplanned hospital admissions of adults with cancer.

3. Practitioner Study (RUHAS-PS): We will interview approximately 20 health professionals who care for patients with an active cancer diagnosis to explore professionals’ experiences and views regarding unplanned admissions in adult cancer patients.

This study started in January 2016.