Title: Effective clinical cancer treatment, care and management for people with comorbid cancer and dementia: understanding population demographics and intervention priorities and outcomes (CanDem-Int)
Funder: Department of Health and Social Care

Abstract: Background: Cancer and dementia are chronic conditions affecting a significant number of older people. The addition of a co/multi-morbidity alongside cancer or dementia creates treatment and care complexity and poorer patient outcomes. Research on the prevalence of co-morbid dementia and cancer is limited; no studies describe the size or characteristics of this population with little understood about their clinical needs, potential interventions or outcomes. Aims: This study aims to address current knowledge gaps by: - Estimating the UK population size and describing the demographic, clinical and service use characteristics of people with comorbid cancer and dementia; - Identifying cancer treatment and care intervention priorities and key outcomes for this population; - Understanding the key issues and challenges in conducting research in this population to inform the design of future research. Research Questions: It will answer the following research questions: 1. What are the clinical and service use characteristics of the population of people with comorbid cancer and dementia? 2. What problems, priorities and best practices do people with comorbid cancer and dementia, their families/supporters and staff identify in relation to cancer treatment, care and management of people with comorbid cancer and dementia within NHS services? 3. What do these data tell us regarding optimal research design and implementation, to inform the planning and conduct of future research and intervention studies in this population? Research Plan: The study will consist of two inter-related work packages (WPs). WP1 will identify the characteristics of people with comorbid cancer and dementia, WP2 will examine the experiences and intervention priorities for people with comorbid cancer and dementia, their family/supporters and NHS staff. Data from the WPs will be combined to identify priorities, optimal design and implementation for future research and services in this population. WP1 is an epidemiological, cross-sectional observational study of patients aged 50 and over with a Quality Outcomes Framework (QoF) registered diagnosis of dementia, cancer or both conditions. These data have been obtained through ResearchOne, a database of de-identified clinical and administrative routine data drawn from the electronic patient records of 391 GP practices in England. It will identify the size, demographic, clinical and service use characteristics of people with comorbid cancer and dementia compared to those with only one of these conditions using multi-level modelling to take account of the hierarchical data structure (patients nested within practices), allowing identification of characteristics associated with having both conditions, predictive of service use. WP2 is a qualitative study utilising ethnographic interviews, observations and conversations with people with comorbid cancer and dementia, current or former carers/supporters of this group, and clinicians working in NHS cancer services, to explore experiences of care and improvement priorities. Ethnographic observations and conversations will follow the care pathway experiences of people with co-morbid dementia and cancer across different hospital departments during one or more visits for cancer treatment/care. Targeted observations of general, routine practice will focus on areas of good and problematic practice identified in the interviews and care pathway observations. Data analysis will be an iterative process exploring the content and patterns in the data via triangulation across data sources. Benefits: Outputs from the WPs will be synthesized to identify future research and service delivery priorities, including: identification of priority areas and implications for the design and conduct of future research; raising clinical and research awareness of the needs people with comorbid cancer and dementia; providing the first description of the size and clinical characteristics of this population; identification of areas for practice improvement, which can be immediately implemented in participating Trusts; provision of information to help patients with dementia and their families/supporters to understand and negotiate cancer services.

Lay abstract: Cancer and dementia are conditions that affect many older people. A considerable number will have both conditions. Research suggests care is more complex when someone with cancer has other health problems. Little research has been done on cancer treatment, care and management when someone also has dementia. There is little known about this groups size or characteristics. We have talked to people who have had cancer, and carers/supporters of people with cancer and/or dementia. They told us many things that would be worse if someone had both conditions and felt research should be urgently done in this area. This study aims to: - Describe the population of people who have both cancer and dementia - Identify priorities for interventions to improve cancer treatment and care for people who also have dementia. We will do this through two work packages (WPs). WP1 will describe people who have cancer and dementia in West Yorkshire, including the numbers and their characteristics (e.g. gender, ethnicity, other health problems) by analysing anonymised data from GP records and use this to estimate figures for the UK. In WP2 we will interview up to 15 people with cancer and dementia, up to 15 carers/supporters and up to 15 clinicians working in NHS cancer services in two local Trusts. We will observe the experiences of 10 people with dementia using hospital cancer services. We will use the results to draw conclusions about ways to improve care. One co-applicant is a former carer for her husband who had cancer and dementia. A group of service users and carers/supporters with expertise in this area will support the project through membership on the project management group supporting project design, conduct, analysis and reporting and helping develop accessible resources to disseminate findings through NHS Trusts, cancer and dementia charities and support groups.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: NEUROLOGICAL;CANCER AND NEOPLASMS