Principal Investigator:Dr Richard Wagland, Senior Research Fellow, University of Southampton, School of Health Sciences

Co-Investigators:

Professor Alison Richardson, Professor of Cancer Nursing & End of Life Care and Director of NIHR ARC Wessex, University of Southampton & University Hospital Southampton

John Defty, Advanced Clinical Practitioner in Cancer Care, University Hospital Southampton

Dr Emma Brown, Medical Oncologist, Acute Oncology Lead. University Hospital Southampton

Start date: January 2023

End Date: May 2024

Funder: University Hospitals Southampton (UHS) NHS Foundation Trust R&D Small Grants Award

Summary

People with cancer often need to access acute oncology services for serious problems caused by their disease or treatment. It is good practice for services to collect information about patients’ experiences of care to understand how they could be improved. The aim of the PREMAC study was to develop a questionnaire for patients who have used acute oncology services to feedback their experiences.

The study progressed in three stages. First, a literature review to identify previous research that described elements of care important to people with cancer whilst experiencing a cancer emergency. This was followed by interviews with eight patients who had cancer and eight doctors and nurses from the acute oncology team at Southampton General Hospital to hear their thoughts about the most important elements of care. From these two activities we identified what the questionnaire should aim to measure.

In the second stage, a group of patients who had a diagnosis of cancer and used acute oncology services helped the research team draft questions and response options. These questions were then tested with a further four people with cancer, to make sure the questions were easy to understand. Then we made some changes to the questionnaire. The final questionnaire had 37 questions about the quality of care and nine questions about a patients’ background and condition. Questions included aspects such as: quality of information and care they received; the quality of the care environment (whether it was clean and safe, and provided privacy; whether patients’ family and friends were supported and kept informed by staff; whether patients had long waits for care; and the ease of discharge.  

In the third stage, the questionnaire was sent to patients with cancer to complete one to two weeks after they had used the acute oncology service at Southampton General Hospital. Patients were sent a text to their mobile phone with a link to the questionnaire. 171 patients completed the questionnaire, the majority of whom were female (56.5%). Most participants rated their overall care experience positively, with 82.4% selecting “Very good” and 9.7% selecting “Good.” Only 4.2% of participants rated their care as “Poor” or “Very poor”.

Responses to the questionnaire allowed us to test how well each of the questions worked both by themselves and in combination with others in the questionnaire. Responses provided the Trust with important information to help identify areas where care was very good and areas in need of improvement. The next study will test the questionnaire in other Trusts whose acute oncology services might be organised in different ways to the services at Southampton.

Background

Hospitals have established structured pathways for managing patients with oncological emergencies through acute oncology (AO) services. Whilst some Trusts have developed local questionnaires specific to that service there is no survey available to measure and compare patient experience across NHS trusts. This study will co-design a patient-reported experience measure (PREM), intended to be adaptable for use across different AO service models.

Advisory Group Members:

Andrew Dossett, Lead Clinical Advanced Clinical Practitioner for Acute Oncology Service, University Hospital Southampton             

Jane Winter, Macmillan Lead Nurse, Wessex Cancer Alliance

Laura White, Head of Involvement & Participation, University Hospital Southampton

Katie Hudson, Lead Advanced Clinical Practitioner for Cancer Care Wards, University Hospital Southampton

Mrs Susan Restorick-Banks (PPI Representative)

Mrs Anne Ongley (PPI Representative)

Alison Keen, Head of Cancer Nursing, University Hospital Southampton

Philippa Jones, Acute Oncology Nurse Advisor, Board Member of UK Acute Oncology Society.

Prof. Ernie Marshall, Medical Oncologist, Wirral University Teaching Hospital (Clatterbridge) NHS England national lead for Acute Oncology