Breakthrough in measuring how cancer support programs empower survivors

30 July 2014

Richard Osborne
Professor Richard Osborne
Patricia Livingston
Professor Patricia Livingston

Cancer support services world-wide are, for the first time, able to measure the benefits of their programs in empowering patients to manage their illness, thanks to the work of Deakin University and Canadian researchers.

Deakin Faculty of Health researchers were part of a Canadian study led by Université Laval and the University of Waterloo that evaluated Deakin's Health Education Impact Questionnaire (heiQ) as a tool for measuring the impact of support programs on cancer patients' feelings of empowerment.

Two studies were conducted; one validated the heiQ with cancer patients overall and the other used heiQ to test if current evaluation tools used by the Cancer Council Victoria and Canadian Cancer Society capture patients' sense of empowerment. The results of both studies are published in the prestigious international journal, Cancer.

Community-based cancer services are designed to support cancer patients and survivors by empowering them to manage the challenges of dealing with the disease and have a sense of control over their lives. While cancer support programs regularly evaluate their programs, there has been no proven way to determine patients' feelings of empowerment, until now.

"The field of supportive care for cancer patients has been frustrated for many years by the lack of tools to find out how empowered patients feel when faced with the numerous challenges stemming from their cancer experience," said Richard Osborne, Professor of Public Health with Deakin's Population Health Strategic Research Centre and one of the study authors.

"Through these two studies we know that heiQ can fill this gap and we are now positioned to improve our understanding of program effects for millions of cancer patients around the world."

Professor Elizabeth Maunsell of the Université Laval (Canada) who led the studies said this research represents a very significant and important contribution in cancer research and practice.

"We looked extensively for potential measures in all kinds of fields, and found the heiQ had the key elements of empowerment from the cancer patient's perspective, including social integration, constructive attitudes and approaches, have good skills and techniques, and managing emotional distress," Professor Maunsell said.

With the growing number of cancer survivors, more responsibility is being placed on patients, their care-givers and community services. This makes empowering patients increasingly important and places more pressure on service providers to ensure their programs are effective.

The benefits of the tool in helping community-based cancer organisations understand and improve their programs was illustrated in the second of the studies published in the journal, Cancer.

"We found that many of the indicators already used by Cancer Council Victoria and by the Canadian Cancer Society to evaluate their community-based services do in fact tap into important aspects linked to patient empowerment – including feeling more in control over their illness, feeling more confident about seeking support and being able to navigate their way around the health care system," explained Professor Patricia Livingston from Deakin's Quality and Patient Safety Strategic Research Centre who developed the Cancer Council Victoria's indicators.

"Our results mean that these indicators can be used by community-based organisations to see if one of their important goals – that of empowering patients – is being achieved."

Cancer Council Victoria's head of Cancer Information and Support Services, Anna Boltong, said that while they knew anecdotally that their Helpline service was highly valued by people affected by cancer they had no objective way of demonstrating the value.

"We hear that the support provided makes people affected by cancer feel more informed and prepared for the physical and emotional effects of cancer and its treatment and our specialist oncology nurses receive messages of thanks from patients and carers on a daily basis," Dr Boltong said.

"However, until now we have had no objective or routine way of measuring this value or describing which elements of our information and support services make most difference to the people that use them.

"This new measure fills a global gap in the ability to demonstrate the health impact of cancer information and support services in a way that moves beyond assessment of customer satisfaction."

The papers, 'Health-related empowerment in cancer: Validity of scales from the health education impact questionnaire' and 'Indicators for evaluating cancer organizations' support services: Performance and associations with empowerment', are published in the journal Cancer. The studies involved researchers from the Université Laval, University of Waterloo and Deakin University and received funding from the Canadian Institutes of Health Research, Propel Centre for Population Health Impact and the Canadian Cancer Society Research Institute.

 

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