Understanding population demographics and primary healthcare resource use for people with comorbid cancer and dementia

Conference:

SAPC ASM 2020 - cancelled due to pandemic

Talk Code:

C.13

Presenter:

Ellen Mason

Co-authors:

Michelle Collinson, Amanda Farrin, Laura Ashley, Alys Griffiths, Rachael Kelley, June Hennel, Claire Surr

Author institutions:

Leeds Institute of Clinical Trials Research University of Leeds, Centre for Dementia Research Leeds Beckett University, School of Social Sciences Leeds Beckett University, Centre for Dementia Research Expert by Experience group Leeds Beckett University

Problem

People with comorbid cancer and dementia are likely to have complex care needs, making the provision of cancer treatment and care particularly challenging. Little is known about this population that could inform practice. We undertook two studies: study 1 aimed to estimate the prevalence, characteristics and healthcare usage of people living with cancer and dementia in England; study 2 explored experiences of cancer care for those with both conditions.

Approach

Study 1 analysed an anonymised database of electronic records from 391 English GP practices during 2005-2016. Data, obtained from ResearchOne, include socio-demographics, clinical characteristics, primary care appointments, prescriptions and referrals for patients aged ≥50 with a cancer and/or dementia diagnosis consistent with QOF eligibility. Study 2 used ethnographic methods to explore the experiences of patients, their families and hospital staff in two NHS trusts. Patient, carer and public involvement was embedded throughout.

Findings

The most common comorbidities in people with comorbid cancer and dementia were mental health/psychiatric disorders (24% of patients) and stroke (20%). In the year following the first mention of cancer/dementia in GP records, people with both conditions had 9% more primary care appointments compared to people with cancer alone (IRR: 1.09, 95% CI: 1.01-1.17) and 37% more compared to people with dementia alone (IRR: 1.37, 95% CI: 1.28-1.47). 162,371 people aged ≥50 with cancer and/or dementia were identified. 7.5% of those aged ≥75 with cancer also had dementia and similarly, 7.5% of people with dementia also had cancer. People with cancer and dementia differed from people with cancer; they were older (mean 83 vs. 69 years), more likely to be living in a care home (44% of patients vs. 5%) and more likely to have additional comorbidities (70% of patients vs. 50%). The most common comorbidities in people with both cancer and dementia were mental health/psychiatric disorders (24% of patients) and stroke (20%). Dementia prevalence amongst people with the ten most common cancers ranged from 1.2% (brain, other CNS and intracranial tumours) to 5% (bladder cancer). People with cancer and dementia had 9% more primary care appointments than people with cancer alone (IRR:1.09, 95% CI:1.01-1.17). Study 2 identified many challenges relating to cancer care, including recognition of dementia, and difficulties around decision-making, care processes and care environments. Families played an important and difficult to replicate role in relatives care.

Consequences

This study provides the best available estimates of the size, characteristics and care needs of this comorbid patient population. Results highlight the prevalence and complexity of this population but indicate a lower primary healthcare use than expected for people dealing with two complex conditions.

Submitted by:

Ellen Mason

Funding acknowledgement: