PRAGMATIC

• Research type

  Research Study

• Full title

  Patients'experiences of a supported self-management pathway in breast cancer

• IRAS ID

  272971

• Contact name

  Valerie Jenkins

• Contact email

  val@sussex.ac.uk

• Sponsor organisation

  University of Sussex

• Duration of Study in the UK

  2 years, 0 months, 0 days

• Research summary

  Research Summary

  Patients’ experiences of a suppoRted self-manAGeMent pAThway In breast Cancer (PRAGMATIC)
  As more people survive cancer, the NHS is prioritising support pathways to help survivors live well beyond their diagnosis. Traditional breast cancer follow-up involves regular clinic visits that may be impractical for women who have returned to work/caring duties. Large numbers of patients attending follow-up clinics mean there is increasing pressure on the resource limited NHS.
  The National Cancer Plan recognises the importance of personalised care and support, and recommended the implementation of follow-up and supported self-management (SSM) pathways for patients who have completed secondary care treatment for their cancer.
  SSM pathways allow patients to manage their health and report signs and symptoms as and when necessary, meaning less time spent attending follow-up clinic appointments. In the field of breast cancer, the proposal was for an open access policy to enable GPs or other healthcare professionals to refer patients back to the breast care team immediately if they suspect recurrent cancer or problems related to treatment.
  There are obvious benefits in terms of clinical time saving, but few data on patients’ experience at managing the pathway, how confident they feel in reporting and receiving advice about suspicious symptoms in a timely manner, and how self-management effects their emotional and psychosocial well-being.
  The Surrey and Sussex Cancer Alliance (SSCA) have funded the PRAGMATIC study and it will be conducted in hospitals in the Surrey and Sussex area who have implemented the SSM pathway. Patients who have completed hospital treatment for their breast cancer and are about to join the SSM are eligible. PRAGMATIC will assess the SSCA breast cancer SSM programme from the view of the patients, and measure its impact on NHS costs. The study will run for 24 months.

  Summary of Results

  Patients’ experiences of a suppoRted self-manAGeMent pAThway In breast Cancer (PRAGMATIC)
  
  The PRAGMATIC Study was conducted by researchers at the Sussex Health Outcomes Research and Education in Cancer (SHORE-C) unit at the University of Sussex, between February 2020 and December 2021. It was sponsored by the University of Sussex and funded by the Surrey and Sussex Cancer Alliance.

  As the number of patients living with and beyond a cancer diagnosis continue to increase, there is a clear need for more sustainable models of follow-up to address the distinct and variable needs of individual patients, and to relieve increasing pressure on capacity and resources in the NHS.

  Supported self-management (SSM) pathways, also known as patient-initiated follow-up, have been implemented by several NHS trusts and allows patients to:-

  • Manage their breast cancer health
  • Report signs and symptoms to the breast cancer nurse’s helpline
  • Reconnect with the clinical team as and when necessary

  There are obvious benefits in terms of clinical time saving, but how do patients manage the SSM pathway?

  The PRAGMATIC Study examined the views and experiences of 110 participants who had finished their hospital-based breast cancer treatments and were about to start on the SSM pathway.

  108 women and 2 men participated, and were recruited from three hospitals in the South East of England.

  1) Ashford and St Peter’s Hospital
  2) Brighton and Sussex University Hospitals
  3) Worthing Hospital

  Participants completed questionnaires every 3-months for a year, which monitored how they were feeling and coping with the self-management of their breast care.

  A 3-monthly cost diary was completed to record the number of times participants contacted the SSM helpline, hospital or their GP with breast cancer related concerns.

  32/110 were interviewed via the telephone to understand more about SSM and explore the benefits and challenges for patients.

  What were the findings?
  The results showed that SSM was acceptable for the majority of breast cancer patients Those who had received chemotherapy treatment compared to those who had not had lower baseline quality of life (QoL) scores and a higher rate of psychological morbidity.
  The good news was that both QoL & psychological problems improved over the 12-months.

  How did participants manage their breast cancer follow-up?
  Over the year most felt confident to contact the SSM helpline with any breast cancer related concerns.
  The main reasons for phoning the breast team were:
  1) To ask for advice about breast cancer signs and symptoms
  2) For help with managing side-effects
  A small number had an in-person appointment with a healthcare professional following a call to the SSM helpline.
  Many would seek future help and advice from the breast care nurses via the helpline because of their expertise, but did not consider contacting them or their GP for help with psychological/emotional concerns.
  Exercise was important to many but this was impacted by the COVID-19 pandemic.

  What did the cost diary tell us?
  Analysis of the diary showed that anxiety and depression increased the use of NHS services.
  This highlighted the importance of offering/supporting the mental health of breast cancer patients.

  How did participants cope with the COVID-19 pandemic?
  The study was conducted during the COVID-19 pandemic. This meant that patients were dealing with additional pressures of social isolation, financial hardship and loneliness.

  What did the interviews tell us?
  Most people were confident about managing their breast cancer care however there were some concerns about missing, or finding something alarming especially in those with screen detected breast cancer.
  There was a lack of clarity about who could help with treatment related side effects - e.g. hot flushes from hormone therapy and confusion on who was best placed to help with psychological distress. The men in the study found the generic breast cancer leaflet unsuitable for them Some held back from contacting the nurse during the pandemic as they did not want to add to the burden on the NHS, and/or did not want to catch COVD-19.

  What happens next?
  The following suggestions were made to the Trusts and the Surrey & Sussex Cancer Alliance:
  • Consider additional support and/or a different type of follow-up to those who had chemotherapy
  • Measure patients emotional/psychological wellbeing at start of SSM and offer interventions as necessary
  • Sign-post patients about where/who/what helps to relieve treatment related side effects
  Also, we have presented the findings at several local, National and International meetings and submitted papers describing the results to scientific journals.
  If you would like a copy of any published paper please contact SHORE-C. val@sussex.ac.uk or l.matthews@sussex.ac.uk We would like to thank all the participants who took part in this research.

• REC name

  London - Chelsea Research Ethics Committee

• REC reference

  19/LO/1966

• Date of REC Opinion

  17 Jan 2020

• REC opinion

  Further Information Favourable Opinion