Abstract CN1
Background
The use of ePROMs in clinical practice has the potential to generate population level patient-reported outcome data alongside promoting patient-centred care and improving patients’ quality of life. Individualised PROMs may be particularly helpful in identifying, prioritising, and discussing health concerns, yet little research in cancer nursing has evaluated this. Gestational Trophoblastic Disease (GTD) is a rare complication of pregnancy that can present as or turn into cancer. This nurse-led research group has recently developed a GTD specific ePROM (ePAQ-GTD) that has been integrated into the GTD pathway to support population level research and deliver tailored virtual nurse-led patient centred care.
Methods
From January 2020, ePAQ-GTD and a new nurse-led virtual clinic were offered to all GTD patients at a regional GTD centre at referral, start of treatment, end of treatment, 6 weeks, 6 months, and yearly post chemotherapy. Feedback of ePAQ-GTD responses were provided ahead of the clinic in the form of an electronic summary report. Reflexive thematic analysis of qualitative interviews with a purposive sample of GTD patients (n=15) and GTD nurses (n=3) was conducted for an in-depth evaluation of ePAQ-GTD’s use as an outcome measure used routinely in clinical practice.
Results
The results of the analysis identified three key themes, firstly that patients and staff found ePAQ-GTD demonstrated content validity and was a relevant and acceptable tool to capture the impact of GTD and its treatment from the patient perspective. Secondly, ePAQ-GTD facilitated and enabled important discussions to happen in the virtual nurse-led clinic, especially around taboo subjects such as sexual dysfunction and mental health emphasising its comprehensiveness and patient-centredness. Lastly, the feedback of ePAQ-GTD results in the context of a nurse-led clinic was linked to improvements in wellbeing through improved communication, empowerment and decision making.
Conclusions
Findings suggest ePAQ-GTD has content validity as an outcome measure. The feedback of ePAQ-GTD results in a virtual nurse-led clinic also shows benefits in relation to communication, empowerment and decision making when integrated into a nurse-led cancer pathway for GTD.
Clinical trial identification
Editorial acknowledgement
Legal entity responsible for the study
Sheffield Teaching Hospital NHS Foundation Trust.
Funding
National Institute of Health Research (NIHR).
Disclosure
S. Radley: Non-Financial Interests, Leadership Role: ePAQ. All other authors have declared no conflicts of interest.