Improving the Quality and Value of Care for People with Stage 4 Cancer

  • Research type

    Research Study

  • Full title

    Improving the Quality and Value of Care for People with Stage 4 Cancer: a mixed methods study to inform improvements to the care of patients, families and carers in Scotland

  • IRAS ID

    330233

  • Contact name

    Joanna CS Bowden

  • Contact email

    joanna.bowden@nhs.scot

  • Sponsor organisation

    NHS Fife

  • Duration of Study in the UK

    1 years, 2 months, 30 days

  • Research summary

    Around one third of people with a new diagnosis of cancer in Scotland live for less than one year, with some living just days or weeks.

    People with advanced cancer who are nearing the end of life are at high risk of hospital admission; with many admissions occurring in the last days or weeks of life. At this time of inevitable deterioration, the value of admission to the person is often questionable, and admissions may even be associated with harm.

    National Quality Performance Indicators exist for cancer diagnostic and treatment pathways. Cancer teams across Scotland are accountable for delivering care in line with these standards. However, no quality standards exist for care for people with advanced cancer who require a palliative care approach. This risks unwarranted variation in advanced cancer care across Scotland, and no accountability for ensuring that people can access the care they need.

    We will interview people with a new diagnosis of advanced cancer in Fife and Lothian, and those they are close to, to learn about their experiences of care and support over time (Sub-study 1). We will explore what is important to people and the extent to which healthcare provides the kind of support they need; with a particular focus on gaps or shortfalls in care.

    In addition, we will explore why people with advanced cancer are so frequently admitted to hospital (in Fife), including how involved people were in the decision making process and what happens to them following admission (Sub-study 2).

    Our research will provide a broad and deep understanding of the reality of advanced cancer care in South East Scotland, including what people find most helpful and where care is lacking. Ultimately, we will use our learning to inform the development of national standards of advanced cancer care for people in Scotland.

  • REC name

    North of Scotland Research Ethics Committee 2

  • REC reference

    23/NS/0107

  • Date of REC Opinion

    28 Dec 2023

  • REC opinion

    Further Information Favourable Opinion