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Improving the cancer system – with feedback from patients

survey 2010No one experiences the cancer system like a person going through that system. That’s why, since 2004, Cancer Care Nova Scotia has been surveying patients for their insight and their suggestions. “It is important for us to understand what is working well in the cancer system and what needs to be improved,” says CCNS Quality Manager Jill Petrella.

“Ultimately,” she adds, “the goal is to improve patient outcomes.”

The CCNS survey, which is now conducted every two years, is part of a national initiative to enhance cancer care. Patients who have had active treatment in the six months, prior to the survey, are randomly selected. In 2009, the most recent survey year, more than 1400 Nova Scotians were invited to participate. Sixty per cent – a high response rate – said yes.

“The questionnaire,” notes Jill, “ is Canadian. Because all provinces are using it, we can compare how Nova Scotia is doing against a national average and we are doing extremely well.”

Indeed, Nova Scotia generally has higher rates of patient satisfaction than the national average, and the Cape Breton Cancer Centre, in particular, is frequently the top scorer in the country.

But there is still much to learn – and improve upon. The survey, which CCNS conducts in partnership with the Cape Breton District Health Authority and Capital Health, highlights areas for change that participants in the cancer system can address together and individually.  

Take, for example, the issue of pain management. The first survey, conducted in 2004, found that only 67% of individuals said their pain was effectively controlled. Two years later, 80% of respondents indicated their pain was effectively managed. Again in  2009, individuals reported a high level of satisfaction with the manner in which their pain was controlled.

“The system has improved significantly in this area,” says Jill. She notes that a number of initiatives have been put in place since this inaugural survey. Among these are the production of CCNS’s management guidelines for pain, released in 2005, and the launch of its continuing education programs, including a three-day palliative care program for frontline health workers on this topic.

“The survey highlights areas where we could be doing better,” notes Jill. “We share the results with districts at our regular cancer meetings and look for ways going forward to address the issues.” 

One of the issues that has been identified by patients is emotional support. “This is an area that needs work in all provinces across the country,” says Jill. “We’d like to change that.”

Change is imminent. CCNS is working with the Canadian Partnership Against Cancer (CPAC) and health districts across the province to roll out a new program to screen for distress among patients as a first step in providing help. The program is being introduced  by Cancer Patient Navigators in early adopter districts including: Annapolis Valley Health, Pictou County, South West, and Guysborough Antigonish Strait . As well, it is being trialled by the Head and Neck Cancer Site Team and the Thoracic Cancer Site Teams at Capital Health. The Cape Breton Cancer Centre is also planning to begin screening for distress this fall. Work is underway to make this standard of care available to patients provincewide.

“This is an issue we have grappled with – and patients have told us is important,” says Jill. “This new screening tool will be an important tool in helping patients and their families. We will be watching the responses to the Patient Satisfaction surveys over the next few years. We hope and expect to see improvments in questions related  to emotional support as use of this new tool becomes routine across the province.”

This important tool was shaped, in part, by feedback from patients.