Improving the CANcer fear of recurrence pathway (ICANBE)
Research type
Research Study
Full title
Improving the CANcer fear of recurrence and psychological therapies pathway for BrEast cancer (ICANBE)
IRAS ID
314421
Contact name
Sara J MacLennan
Contact email
Sponsor organisation
University of Aberdeen
Duration of Study in the UK
0 years, 10 months, 31 days
Research summary
Summary of Research
Fear of Cancer Recurrence (FCR) is one of the most persistent and prevalent problems for those living with and beyond cancer and one of the most commonly reported unmet needs in all cancer groups. A growing number of therapeutic interventions have demonstrated efficacy in reducing FCR, although this remains an emerging field of research. The University of Aberdeen and NHS Grampian are jointly developing a model of service delivery using an Acceptance and Commitment Therapy intervention targeted at those living with and beyond cancer to manage FCR.The current mixed-methods study will inform and evaluate the early intervention development work and assess the feasibility of an online intervention. The study will involve a) post-intervention interviews with women who meet inclusion criteria for the intervention and healthcare professionals and b) pre and post intervention questionnaires to evaluate fear of recurrence, mental health, illness representations and coping.
Summary of Results
: Fear of Cancer Recurrence (FCR) is a significant psychological concern for those living with and beyond cancer, with implications for their overall well-being and quality of life.
A growing number of therapeutic interventions have demonstrated efficacy in reducing FCR, although this remains an emerging field of research.The University of Aberdeen and NHS Grampian have jointly developed a model of service delivery using an Acceptance and Commitment Therapy intervention targeted at those living with and beyond cancer to manage FCR. The purpose of this project was to inform and evaluate the early intervention development work and assess the feasibility of this online intervention to help individuals manage FCR.
We recruited 15 participants to join the two groups of the six-week long online course Living Life with Uncertainty After Breast Cancer. Study participants completed questionnaires (7-item Fear of Cancer Recurrence Questionnaire (FCR7), Brief Resilient Coping Scale, the Four-item patient health questionnaire (PHQ4), Brief Illness Perception Questionnaire and the compact – A tool for measuring psychological flexibility) prior to starting the course and within one week of finishing the course.
The research fellow conducted semi-structured interviews with all study participants who completed the course (n=11), with one participant who was not able to join the course due to IT issues and with breast care nurses/advance nurse practitioners who are part of the breast cancer patients’ healthcare team in NHS Grampian (n=6).
The results of this pilot mixed-methods study revealed that the online intervention overall appeared to be feasible and acceptable. FCR levels of study participants decreased and the vast majority (10 out of 11) participants felt that the course was beneficial to their fear of cancer recurrence, anxiety and boosted their wellbeing.
The opportunity to engage with people who have gone through relatable experiences helped participants normalise their feelings and fears. Both groups took steps (email exchange, WhatsApp group creation) to remain in touch after the course, which was an unanticipated, but significant outcome of the study, highlighting the perceived lack of opportunities for past and present cancer patients to engage in informal peer support activities.
This pilot study highlighted the need to address fear of cancer recurrence (FCR) as a distinct prevalent problem for breast cancer patients in the North-east of Scotland. Introducing a short FRC screening tool like FCR4 or FCR7 would allow clinical teams to identify patients who might benefit from the intervention. Running the online course could reduce the workload of BCNs, who are currently the primary contact point for patients’ concerns about recurrence and general anxiety.
A strong conclusion from patients’ and healthcare professionals’ interviews is that the one-year follow-up appointment with a consultant and a nurse practitioner is a key point in the patient journey that significantly affects future wellbeing. There was a strong consensus that this one year appointment needs to be offered as part of routine care. This would also be an excellent point to introduce FCR screening as study participants highlighted that a period of time is needed after treatment to re-settle into one’s daily life and see how one adjusts to their diagnosis and treatment.
We identified several ways of identifying patients with FCR concerns who could be informed about the FCR intervention:
One: self-presentation to BCNs with concerns after being discharged
Two: any concerns seen during second year BCN appointment
Three: letter informing women about the intervention sent out around the time of yearly mammogram appointments
Four: consultant follow-up.We found that the first option puts pressure on the patient and a lot of patients possibly won’t want to come forward. Yearly mammogram appointments are good ways to catch people who find themselves experiencing anxiety that they haven’t anticipated, but simultaneously, they would be reassured by their clear mammogram and not wanting to participate in the course at that time.
Screening for FCR and introducing a FCR intervention during a one year follow up with a consultant + nurse practitioner and during second year BCN appointment is our recommendation because the patient will have had time to adjust to their new reality after going through treatment and will have identified new challenges in their life and how efficiently they are managing to cope with them. Again, one negative of this approach is that their FCR might diminish after being given the all-clear after the consultant and nurse appointments.
Thus, we recommend the materials should be given out during these appointments and patients encouraged to self-present to the BCNs if they have FCR or anxiety concerns. It is important to remind patients that the BCN support remains there for them after treatment and that they are able to signpost to other mental health support if needed.
Our recommendations for breast care services are as follows:
1. Implementing a short screening tool for fear of cancer recurrence (FCR4) at various stages of cancer survivorship: a) during 1 year follow up appointment, b) during 2y year follow up appointment, and c) as the need arises during contact with HCP.2. We suggest that risk of recurrence and fear of recurrence becomes a routine part of the conversation throughout the breast care pathway. This can be implemented by empowering breast care nurses with information about fear of recurrence (such as via a written document or a one-hour workshop).
3. We encourage development of easily accessible materials on fear of cancer recurrence for patients, visible information about any resources and courses regarding FCR.
4. Most importantly, we urge that FCR group interventions, such as Living Life with Uncertainty After Breast Cancer, have a place in the ecosystem of cancer survivorship care.
5. The delivery of such interventions is best supported by a combination of multifaceted skillset of clinical psychologists, breast care nurses and expert peer supporters (other members of the group intervention).
REC name
West of Scotland REC 4
REC reference
22/WS/0112
Date of REC Opinion
2 Sep 2022
REC opinion
Further Information Favourable Opinion