Improving quality of life through the routine use of the Patient Concerns Inventory for head and neck cancer patients (PCI-QOL)

The NIHR Research Design Service North West (RDS NW) provides advice on all aspects of developing a research funding application in applied health or social care.

Prof Simon Rogers was successful in securing funding from the NIHR Research for Patient Benefit (RfPB) Programme for the PCI-QOL project, a collaboration between the Faculty of Health and Social Care at Edgehill University, where Simon is a Professor, and Aintree University Hospital NHS Foundation Trust, where he is a consultant Oral and Maxillofacial Surgeon.

During the development of the funding application, Simon sought advice from the RDS NW, which Simon commented as being,

“instrumental in the success of the application.”

Continue reading to find out more about the project, its potential impact and how the RDS NW helped in its successful securing of funding through advice and support available to anyone developing a funding application.

The consequences of treatment for Head and Neck cancer (HNC) patients has profound detrimental impacts such as impaired Quality of Life (QOL), emotional dysfunction, distress, and frequent use of healthcare. This cluster randomisation by consultant preference randomised control trial has two arms, standard follow-up consultations and the use of the Patients Concerns Inventory (PCI) package in review clinics during the first year following treatment.

The study hopes to demonstrate a significant and clinically meaningful improvement in overall quality of life, reduced social-emotional
impact and less distress in those using the PCI. Furthermore, there is a health economic evaluation.

Two centres, Leeds and Liverpool, are involved and the intention is to recruit at least 416 eligible patients from more than 10 consultant clusters.The study started recruitment in early 2017 and the expectation is that recruitment might take 16 months and the overall study three years to complete.

The findings of this study could have a profound impact on how out-patient follow up consultations are conducted, as the PCI is a holistic item prompt list which encourages patients to talk about aspects they wish to raise in the consultation. The PCI facilitates a more patientfocused and directed interaction, allowing items that are important to the patient to be discussed, which for a variety of reasons are often missed in the traditional consultation.

Simon initially sought advice on the funding application for this project in a number of areas including identifying an appropriate source of funding, RfPB in this case, as well as methods and design advice. Simon also used the RDS NW to obtain critical reads of draft versions of the proposal. Here are some further details from Simon on the advice he received:

  • The RDS NW provided a critical, constructive and friendly review and comment on the ‘compelling argument’ for funding, and research methodology. It is very helpful to have input from colleagues who are from different healthcare backgrounds. This helps frame the proposal better in preparation of external scrutiny.
  • The RDS NW provided reflections from working with research teams on numerous other RfPB applications. The RDS NW was able to give experienced guidance on specific aspects such as the advantages and disadvantages of using a Clinical Trials Unit.
  • The RDS NW helped to optimise, through networking, the valuable contribution of the patients involvement in the research practice. The RDS NW enhanced the contribution already made by the Patient and Carer Head and Neck Research Forum, at Aintree University Hospital.

Simon also said that the RDS NW provided resilience and self-belief for the research team when self-doubt and knock backs occurred. They helped maintain the motivation to modify the design, undertake more pilot work, and resubmit the application.

These negative experiences that are all part and parcel of the research journey are sometimes hard to deal with and the support from the RDS NW was invaluable.

This PCI-QOL project is funded by the NIHR Research for Patient Benefit (RfPB) Programme, PB-PG-0215-36047.