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Review of draft standards provides insightful feedback

The completion of the first draftjillsarahnov13 rectal cancer treatment standards in February 2013 marked a significant milestone in the development of clinical standards of care.

Since then, Cancer Care Nova Scotia (CCNS) staff has developed comprehensive processes for sharing the draft standards with health professionals, rectal cancer survivors, and their families to ask for their feedback.

An electronic survey was sent to health professionals in February 2013 and by the first week in April there were 42 responses, which is representative of both individual health professionals and teams from all nine health districts and all disciplines.

Overall, health professionals were supportive of the content in the draft document, but they had a number of suggestions for improvement and clarification including the need for a reference to palliative care.

While health professionals were being surveyed, a committee was established to develop a process for patient, survivor and family feedback. The committee, including two cancer survivors and CCNS staff were tasked with how to inform Nova Scotians affected by rectal cancer of the opportunity to review the draft standards, determine the best tools to use to gain their feedback (electronic surveys, focus groups, telephone interviews, etc..), and the questions that should be asked to help focus the response.

“Reaching out to health professionals through the district health authority structure is relatively easy,” said Robin McGee, a rectal cancer survivor and a member of the patient engagement committee. “Reaching out to rectal cancer patients to invite them to comment on a clinical document is more difficult. As a committee we decided on an approach we hoped would work, and agreed we would learn from this first experience and tweak it as necessary for the next patient review of standards.”

In an effort to reach as many rectal cancer patients as possible, a news release was issued to all media outlets in Nova Scotia, information was posted on the CCNS website, and promoted through Facebook and Twitter. It was also shared with membership of CCNS’s Cancer Patient Family Network and with the Nova Scotia chapters of Ostomy Canada. In addition, letters were sent to rectal cancer surgeons and cancer patient navigators informing them of CCNS’s need for patient feedback on the draft standards, and asking them to inform rectal cancer patients of the opportunity. Many people learned of the opportunity through word-of-mouth and support groups.

Interested rectal cancer patients, survivors, and family members were invited to read the draft standards on the CCNS website and complete the online survey and/or participate in one of two focus groups being held in Halifax and Sydney. Anyone unable to provide feedback in this way was invited to contact the Sarah MacDonald, Patient Engagement Coordinator using CCNS’s toll-free number, and provide their feedback over the telephone.

The multi-pronged approach for reaching out to rectal cancer patients and their families worked fairly well, as did the committee’s decision to frame questions around three areas: timelines for treatment, supportive care and follow-up. Although patients were free to comment on all sections of the draft standards, committee members believed these would be the areas patients would be most interested in.

Ten individuals participated in the two focus group and 18 people completed the electronic survey. Their feedback was insightful. This feedback for strengthening the standards included: developing a timeline for supportive care that mirrors the timeline for the standard to include key moments in treatment and supportive care, and highlight patient and provider decision points. They emphasized the specific and unique need for support at the time of ostomy and ostomy reversal. They also identified topics such as referral to genetics services, which had not been addressed in the draft standards. Their comments also highlighted areas where improved patient education is needed.

In addition to issues specific to rectal cancer, patients and families also mentioned concerns that pertain to all cancer patients regardless of diagnosis, such as education tools for people who are visually impaired, improved communication between health professionals, and the importance of psychosocial health services including financial support and help with insurance issues. These issues will be forwarded on to others for consideration and resolution.

“We truly appreciate the time that health professionals, rectal cancer patients and their families took to review the draft standards and provide feedback,” said Dr. Carman Giacomantonio, Chief Medical Director, Cancer Care Nova Scotia. “In asking for and implementing (where appropriate and possible) health provider and patient feedback, we are ensuring the final clinical standard for the management of rectal cancer is reasonable, achievable and meets the needs of the health professionals who will follow it and the patients and families who will benefit from this standardized approach to care, based on the latest evidence and best practice.”

Now that the health professional and patient reviews are complete, the Rectal Cancer Standards Treatment Working Group will meet this Fall to review and consider all feedback. Where appropriate, feedback will be incorporated into the draft standard. A patient education working group, established in the spring, is reviewing existing education materials to ensure the content is in line with the standard. This group will also determine the need for additional educational resources to support implementation of the standard.

In the meantime, work is also continuing on standards for the diagnosis and referral of patients clinically suspicious for colorectal cancer and psychosocial health services for patients affected by cancer and their families.

It is likely that CCNS will be ready to invite patient and health professional feedback on these standards later this fall. Colorectal cancer patients and their families who are interested in participating in this review are invited to contact Sarah MacDonald at by email at cdha.nshealth.ca or toll-free, by phone, at 1-866-599-2267.

Watch the CCNS newsletter for regular updates on clinical standard development.

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