Of the 13 physicians participating in the study, seven were male and six were female; five practiced in a rural setting, the remainder in an urban setting. The majority (9/13) were in group practice. Approximately 5% of FPs contacted agreed to participate in the study. Overall, topics raised by urban and rural FPs were similar except with respect to guidelines on cancer treatment.
Guideline topics
Using lung, colorectal and cervical cancers as exemplars, FPs were asked for which topics along the cancer control continuum (i.e., prevention, screening, diagnosis, treatment, follow-up, or palliation) they most wanted guidelines. Screening was the topic most frequently mentioned, although reasons behind requests for screening guidelines differed for each disease site. For lung cancer, there are currently no evidence-based screening tools or maneuvers, and no screening guidelines. FPs were uncertain whether to routinely screen for lung cancer in their practices. For colorectal cancer, on the other hand, there are a number of screening tools and a number of recommendations made by different organizations. Conflicting guidelines resulted in FPs being uncertain about what to do in practice.
I'm certainly much less certain of the area of screening for colorectal cancer. I mean there's a lot of different guidelines out there, it depends on who you read and I regard that as an area very much in flux...I still remain a bit confused as to who should have what. (FP
6
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FPs also commented that a similar confusion was prevalent with regard to screening guidelines for cervical cancer.
After three normal [screens], every two years and discontinue at the age of 70, that's what it says. And then this other one says start at age 18, and after three normals then do it every three years except high risk patients should have annual smears...the American College of OB/GYN recommends its smears always continue annually. The American Cancer Society and the Canadian Task Force recommends screening until age 65 and 69 respectively. So, it's a dog's breakfast. (FP
5
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However, in comparison to colorectal cancer screening, there was much less ambiguity about what to do in practice. FPs readily adapted cervical cancer screening guidelines to suit individual patient situations or demands.
I would say I have people who I am willing to see every 3 years because I feel quite confident that they'll be back; they're good at keeping up and the ones that I'm more uncertain about in terms of their follow up, I'll make sure I do it more frequently just in case...For me it varies very much between 1 and 3 years and it is very much a decision of my own. (FP
11
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In discussing the issue of conflicting guidelines, FPs raised the point that where more than one guideline exists, the credibility of all come into question. For example, if there are multiple guidelines on a topic, can any be the 'right' one to use?
FPs were also very interested in treatment guidelines. Interest centered around two situations: decision making with patients, and dealing with side-effects of treatment. In the first, FPs wanted to know about treatment available to their patients diagnosed with cancer. They saw their role as helping patients and families make informed choices. As such, they wanted information on treatment goals, survival rates for different treatments, quality of life issues as well as risk of and dealing with potential side-effects.
A lot of the patients I have who go out to a cancer clinic come back and make sure I agree with what they're choosing and the problem is I don't have the information to be able to even aid them in making their decision....So if we had a little bit more information than those flow charts that are 'yes/no' to say [this] is the most recent information for survival rates...that kind of thing would be helpful. (FP
7
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The second area regarding treatment was raised by rural physicians who often saw cancer patients in emergency departments when, for example, patients were home between chemotherapy cycles. FPs mentioned the difficulty caring for patients when they knew little about their treatment plan.
Areas where we really need specific evidence-based guidelines are in treatment and follow-up. I mean, although the patient may disappear to the cancer clinic...they certainly do show up in emergency, and sometimes the husband or wife calls us as well and says, "Well you know they're getting this drug or they're getting this radiation, they're really sick and what do you think about this?" And if we don't even know what they're getting or what the potential side-effects are, it's really hard to be helpful. So, we need specific guidelines. (FP
5
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Rural physicians were also interested in guidelines for follow-up.
...we are going to be doing more and more of our own follow-up, that's the trend, that's the next century, so we need good guidelines. (FP
5
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Guidelines were seen by some FPs as a potential communication device between cancer centres and community-based FPs. They suggested that guidelines could be sent to the FP from the cancer centre and include notations by oncologists regarding individual patients. In this way, FPs would feel they had the tools to provide on-going support and care for patients in the treatment or follow-up stages.
Two themes were identified related to guideline format: format aspects and presentation. Regarding format, Table
1 presents FPs' 'definition' of what attributes comprise a good guideline. The outstanding features requested were a combination of brevity, and formatted in such a way that FPs were able to quickly identify relevant content.
Table 1
Components of a 'Good' Guideline
Dated |
Has a clearly defined, reputable source |
Involves FPs in the creation process to ensure its clinical practicality |
Not too text based (graphics, tables, flowcharts) |
Clear, non-ambiguous recommendations |
Well organized |
Clearly graded as to levels of evidence |
One guideline from one authorative body (to reduce confusion) |
Readable in a few minutes |
Designed so that FPs will use the guideline frequently and become familiar with it |
One to two pages long |
The most popular forms of presentation suggested by FPs were a binder that would be easy to update, and tear-off sheets that could be given to the patient but which also provided a review opportunity for the physician through the act of explaining the guideline to the patient. CD ROMs, posters or software packages (guidelines and a recall system for screening) were other suggestions.
I like [the] idea of the tear off sheet to use in discussion with patients. I think guidelines are only useful to the extent that we can go over them again and again and actually be familiar with them ourselves, rather than just having them tucked in a big binder with many other guidelines. So, something that can be used with the patient. (FP
3
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Computer-based dissemination was acknowledged as the best way of distributing material widely and addressing the difficulties and expense of updating material. Presentation by local leaders, CME, fax, small group meetings, and mail were other suggestions. While computers were mentioned most often, FPs emphasized that information needs to be widely disseminated to all physicians. For this reason, mail was still seen as the most viable form of dissemination.
Patient guidelines
All FPs agreed that guidelines written for patients would be useful, although there was concern that they should be written very clearly, only be available for topics for which there is good evidence, and not be conflicting. They felt patient guidelines would be useful in that they would act as an added voice, giving weight to the FP's recommendation. Guidelines were also seen as useful in countering misinformation brought in by patients (e.g., from the Internet) to the consultation. On the whole, FPs felt that the more information patients had, the better. Three FPs felt that guidelines would encourage patients to take responsibility for their own care; patients could remind their FP if they were due for screening.
So I think the biggest effort is to establish the proper guidelines that are accepted by a group of authorities in Canada and then that would make it easier for me to say, "Well, look, this is the actual guideline that is the result of a great deal of research and in fact you really don't need that mammogram at the age of 40"...I think there has to be an effort to make sure that patients are not given conflicting guidelines. (FP
8
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In terms of content, FPs felt the guideline should echo the FP message. In addition to the tear-off sheets mentioned earlier, ideas for presentation included an educational message played on the telephone when a patient calls, or video messages broadcast on office televisions.