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PETNECK2 Work Stream 3 (WS3) Study- Intervention Development


This study was led by researchers from University of Birmingham, Oxford Brookes University, University of Bristol, University of Stirling and Imperial College Healthcare on behalf of the entire PETNECK2 Research Team.

The sponsor of this study was The University of Birmingham. The funder was NIHR PGfAR.


The PETNECK2 work stream 3 (WS3) study was divided into two parts:

WS3a - Purpose

  1. To explore views of clinicians and patients and family members about:
  •  the current system of head and neck cancer follow-up
  • an alternative new follow-up system called “patient-led follow-up”.
  • their experience of cancer and worries about cancer coming back.

WS3b - Purpose

  1. To develop and evaluate a information resource that will support patients on patient-led follow-up.
  2. To develop and evaluate a training package to support healthcare professionals delivering patient-led follow-up.



Patients undergoing the ‘new’ system of follow up in the trial will firstly have a PET-CT scan approximately 1-year after finishing their cancer treatment. If no cancer is detected, patients will be educated, about what symptoms to look out for that might mean their cancer has come back. The information will also be given as an App and booklet. They will then be guaranteed an ‘open urgent appointment’ within two weeks with their clinical team, if they develop worrying symptom. They will not have to have regular clinic appointments made for them. This is known as patient-led follow up (PIFU).



Patients were recruited from NHS hospitals and cancer support groups and charities. Clinicians and health professionals were recruited from professional bodies, mailing lists and personal contacts. The study was conducted between Nov 2020 and Jan 2022.


Eight group interviews with a total of 34 clinicians (surgeons, oncologists, dietician, radiographer, clinical nurse specialists and speech and language therapists) were conducted were online. Clinicians worked in England, Wales, or Scotland.

Individual online interviews were conducted with 30 head and neck cancer patients, three of whom also had a family member in the interview. On average they had finished their cancer treatment 23 months before.


A survey was completed by 144 Head and Neck cancer patients, and 30 individual patient interviews were also carried out. There were also seven online workshops conducted with 25 patients and three caregivers as well as five workshops with 21 health professionals (including oncologists, nurses and allied health professionals working with head and neck cancer patients).



WS3a- Patients’ and Clinicians’ views on patient-led follow-up

Clinicians highlighted the limitations with the current system of follow-up: lack of flexibility to address the wide-ranging needs of head and neck cancer patients; cost of regular clinic follow-up; and lack of evidence for the current follow-up schedule. They agreed that the current follow-up needs to change. They were keen on the PETNECK2 study to develop and test patient-led follow-up.          

Clinician had some concerns that patient-led follow-up may not suit patients who are less engaged in their healthcare, and some patients worried that it would not suit anxious patients, those on their own, older patients, or those less confident with technology.      

Patients had mixed views about preferring patient-led follow-up or current regular follow-up.  Some patients highlighted that they find regular follow-up reassuring and would miss this in patient-led follow-up. Some thought patient-led follow-up would be more convenient, tie-in with patient-led care and might save the NHS money.

Clinicians felt that patient-led follow-up might make certain patients more anxious or worsen their fear of their cancer coming back and this might delay spotting cancer recurrence. However, most patients were confident about seeking help, in their NHS care, and fear of recurrence was not a major worry. Patients did express some anxiety about whether they would be able to identify symptoms of their cancer coming back. 

In terms of setting up patient-led follow-up, both clinicians and patients felt it was important to make sure there was a reliable route back to clinic.

WS3b- Development of support resources for patient-led follow-up

Based on the views of the patients and health professionals from WS3a, as well as feedback received from a dedicated patient advisory group, patient workshops and interviews and a survey questionnaire, an intervention support package was developed. The intervention, called ‘ACT now & check-it-out’, includes two parts - an education and support session with a health professional, and also a support resource in the form of an app (mobile and web-based) and written booklet for patients. A website was also developed (

The information resource supports patients with the following behaviours while they are on patient-led follow up:

•          assessing what is normal for them

•          regularly checking for any new signs or change in symptoms

•          prompt help-seeking for persistent/new symptoms as well as ongoing concerns

•          managing any fear of cancer recurrence

•          engaging with these self-care behaviours and patient-led follow-up over time

The app and booklet included information on these topics, as well as additional information that was thought to be useful for patients (e.g. information on wellbeing, healthy lifestyle, support groups and organisations and information for caregivers). The app also included several educational videos.

The education and support session was developed for nurses and allied health professionals which comprised of a 30-minute face to face consultation, for which training modules and videos were developed for NHS staff.



This study, as part of the PETNECK 2 programme, explored patients’ and clinicians’ views about head and neck cancer follow-up in the United Kingdom and their views about the content and format of patient-led follow-up.  An intervention support package has been developed, with input from patients and health professionals, that will support head and neck cancer patients while they are on patient-led follow up in the PETNECK2 trial. Lastly, a training resource has been produced that will support staff to deliver the intervention to patients.

For more information about the PETNECK2 trial, please visit:

The Protocol for the PETNECK2- WS3 study can be found
here:  Protocol






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