candem primary v1

• Research type

  Research Study

• Full title

  Understanding and identifying ways to optimise cancer recognition, referral, and management for people with dementia in primary and community care: a qualitative interview study

• IRAS ID

  319330

• Contact name

  Laura Ashley

• Contact email

  l.j.ashley@leedsbeckett.ac.uk

• Sponsor organisation

  Leeds Beckett University

• Duration of Study in the UK

  1 years, 2 months, 30 days

• Research summary

  Background
  One in two people in the UK develop cancer in their lifetime.

  Research shows people with dementia are more likely to have cancer diagnosed at more advanced stages and during an emergency hospital visit. They are also more likely to experience complications from cancer treatment and to have poorly-controlled pain.

  Our clinical experience and PPI-consultation show dementia makes it more difficult: (1) to recognise and communicate about cancer symptoms; (2) for GPs to decide if hospital referral is the best course of action; and (3) for the person with dementia and their family-carers to cope with cancer symptoms and side-effects at home (e.g., pain, distress, wounds, catheters, vomiting).

  Research by our team and others has identified ways to help oncologists improve the experience of hospital cancer treatment for people with dementia. No research has looked at ways to help GPs and primary-care nurses with the cancer care they provide to people with dementia. This is an important gap to address, because many people with dementia have their cancer entirely managed in primary-care.

  Aim
  To help us understand:
  • Barriers to identifying cancer symptoms in people with dementia
  • Ways to support GPs with decision-making about referrals for cancer investigations (and then possibly cancer treatment) for people with dementia
  • Primary-care support needs and preferences of people with dementia and family-carers around managing cancer symptoms and side-effects at home

  Methods
  We will recruit 9-12 GP-practices in Yorkshire and the South-West. GP-practices will invite eligible patients and family-carers to the study. Practices will be paid for staff time spent on the research.

  We will interview 10-12 people with dementia and cancer, 10-12 family-carers, 10-12 GPs, and 10-12 other community-based staff (e.g., district-nurses, community-matrons).

  Interviews will focus on what good cancer care for people with dementia looks like in primary-care, and ways for clinicians and services to achieve this. Interviews will be in-person or by telephone/video-call (depending on participant preference and Covid-distancing), audio-recorded and analysed by developing themes that describe and explain the data.

  Outputs
  We will use findings to:
  • Develop practice recommendations for GPs and nurses
  • Work with dementia and cancer charities to improve their information and support resources for people with dementia who also have cancer and family-carers
  • Identify target areas/strategies for future research (e.g., a need for clearer, or new, cancer care pathways for people with dementia)

  PPI
  Two people living with dementia and cancer (both co-applicants) and four family-carers have helped develop and review this research. They will form a study-PPI-group who will work with us on all stages of the research, including developing and piloting interview topic-guides and methods, analysing and interpreting data, and writing-up and sharing findings. We will provide PPI-representatives with appropriate training and payment for their time.

• REC name

  Yorkshire & The Humber - Bradford Leeds Research Ethics Committee

• REC reference

  22/YH/0261

• Date of REC Opinion

  11 Jan 2023

• REC opinion

  Further Information Favourable Opinion