Pancreatic cancer: new service trial to support carers
PanKind, a foundation dedicated to pancreatic cancer, has partnered with QIMR Berghofer Medical Research Institute to trial a new service that aims to support carers through the devastating impact of pancreatic cancer.
The PRoCESS (Pancreatic cancer Relatives Counselling and Education Support Service) Trial, led by Associate Professor Vanessa Beesley and Professor Rachel Neale from QIMR Berghofer Medical Research Institute, aims to determine whether having a nurse provide structured counselling and education to carers of people with pancreatic cancer helps them cope with the challenges they are facing. It will also look at whether it is cost-effective for the health system.
Over 3300 Australians die each year from pancreatic cancer, with the average time from diagnosis to death a devastatingly short five monthsi. While all attention and focus rightly go to the patient, there is little scope for any thought about the impact on carers, who have minimal time to adjust.
“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,” said Michelle Stewart, CEO of PanKind.
“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.”
Associate Professor Vanessa Beesley, a Behavioural Scientist specialising in Psycho-Oncology, said, “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.
“The main perceived benefits were emotional support, the nurse-counsellor’s 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 videoconferencing or telephone in order to measure its effectiveness. The counselling will be weekly for four weeks and then fortnightly for three months. Monthly sessions are then available until the end of the study if desired.
QIMR Berghofer Medical Research Institute 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.
“PanKind was co-founded by Caroline Kelly, who cared for her husband Avner when diagnosed with pancreatic cancer. Caroline has also supported so many carers and families since Avner sadly lost his battle. PanKind continues to be as equally focused on supporting carers as we are on patients and are proud to continue this legacy,” said Stewart.
i Dumbrava et al, “Chemotherapy in patients with unresected pancreatic cancer in Australia: A population-based study of uptake and survival”, 2017
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