New study aims to help carers of people with pancreatic cancer

A new service that aims to support carers through the devastating impact of pancreatic cancer is being trialled by researchers from QIMR Berghofer Medical Research Institute.

A team of researchers from QIMR Berghofer, University of Queensland, Queensland University of Technology, and Royal Brisbane and Women’s Hospital are partnering with PanKind to trial the Pancreatic cancer Relatives Counselling and Education Support Service (PRoCESS). The trial will see a nurse provide structured counselling and education to carers of people with of people with pancreatic cancer.

Over 3,300 Australians die each year from pancreatic cancer, with the average time from diagnosis to death just five months. While the focus is usually on the patient, there is little thought about the impact on carers, who have little time to adjust.

Associate Professor Vanessa Beesley and Professor Rachel Neale from QIMR Berghofer are leading the trial which will examine whether counselling and education helps carers cope and reduces the cost on the health system.

“Our feasibility study revealed that carers highly valued having a nurse-counsellor with clinical expertise, who was someone outside of the family, to provide support through probably the toughest time of their lives,” Associate Professor Beesley said.

“The main perceived benefits were emotional support, the nurse-counsellors’ knowledge, care coordination and personalised care. The nurse-counsellor was said to become their ‘tower of strength’, helping to prepare them for what is to come and linking in with other health professionals as required.

“The nurse-counsellors can help carers at each stage of the journey, including dealing with diagnosis, treatment options, symptoms management, providing strategies for stress management, financial distress, enhancing relationships, end of life care planning and bereavement support.

“By helping to give carers increased confidence to adequately manage symptoms and treatment, the study also hopes to reduce costs across the health system by reducing patient admissions to hospital. This will be measured by looking at emergency department presentations, time spent in hospital, timing of referral to specialist palliative care services, overall survival, and quality-adjusted life years.”

The project will assess the impact of the counselling intervention on various outcomes, including carers’ belief in their capacity to provide appropriate support, as well as their mental health, fatigue, supportive care needs and quality of life.

All participants will be provided with general information support; however, half of the participants will also be offered counselling and education sessions with a nurse via video conferencing or telephone in order to measure its effectiveness.

The counselling will be weekly in the first month, then fortnightly for three months. Monthly sessions are then available until the end of the study if desired.

“Carers of loved ones with pancreatic cancer are twice as likely to experience clinical anxiety than the people they are caring for, no doubt due to unmet support needs that are compounded by the incredibly short timeline from diagnosis to death,” PanKind CEO Michelle Stewart said.

“In addition to carers being immediately confronted with the need to assist in the management of complex physical symptoms and provide emotional, financial, legal and spiritual support, they also face the impending loss of their loved one. It is a brutal diagnosis and a huge weight to bear.”

QIMR Berghofer is currently recruiting participants for the study. Participants can be from anywhere in Australia but must be the primary carer of a person diagnosed with pancreatic cancer in the last three months. People can register their interest in the study and find out more information by visiting www.pankind.org.au.