Making Decisions About Cancer Screening When the Guidelines Are Unclear or Conflicting

Every year physicians and patients receive hundreds of messages about guidelines for cancer screening. Ideally, physicians will adopt and adhere to the evidence-based clinical practice guidelines. By doing so, there is maximum application of a proven technology to those who can most benefit, and valuable resources are not wasted in examinations that are not based on good or fair evidence. However, many physicians are not adhering to cancer screening guidelines backed by good evidence.^1,2 Also, many are performing cancer screening procedures that are not recommended (either because of a lack of evidence or because they have been shown to be ineffective).³

Most of the literature on physician cancer screening has dealt with facilitators or barriers to the adoption of commonly recommended guidelines. These studies did not address the factors that affect physician practice when the guidelines are unclear or conflicting, or when they clearly recommend against the procedure. We defined an “unclear” guideline as a “C” recommendation (insufficient evidence to recommend the maneuver) from the Canadian Task Force on the Periodic Health Examination (CTFPHE).⁴ Guidelines were “conflicting” when at least 2 organizations gave different recommendations for the same cancer screening examination.

Despite the CTFPHE guidelines,⁴ inconsistencies in practice remain. Although the CTFPHE recommends that breast cancer screening begin at age 50 years, 59% of women aged 40 to 49 years reported having mammograms in 1994,⁵ a rate nearly equivalent to those aged 50 to 59 in Ontario.⁶ It is clear that family physicians—the major cancer screeners in many countries—are frequently not following guidelines. The use of ineffective procedures or those for which the evidence is unclear can waste scarce health resources and lead to harm for those whose test results are false positive. The objective of our study⁷ was to determine the factors involved in the cancer screening decisions of family physicians in situations where the clinical practice guidelines were unclear or conflicting (prostate-specific antigen testing, mammography for ages 40 to 49 years, colorectal tests) as opposed to when they were clear and uncontroversial.

Methods

Ten focus groups⁷ were conducted with 1 urban group and 1 rural group in each of 5 Canadian provinces: British Columbia (BC), Alberta (AB), Ontario (ON), Quebec (QC), and Prince Edward Island (PEI). Ethical approval was obtained from all participating institutions. We focused on family physicians because they are the main preventive health care providers in Canada, and physician recommendation is the most important predictor of whether an individual obtains a particular screening test.⁸ Eight focus groups were conducted face to face, and 2 were done by teleconference because of the geographic remoteness of 2 rural areas. Each focus group was co-facilitated by a local research assistant and 1 of the investigators. The focus group moderators participated in a 2-hour training session to ensure standardization across sites. The group sessions lasted approximately 60 to 90 minutes; all were audiotaped and transcribed verbatim.*Table w1

Recruitment and Sampling

We used maximum variation sampling to ensure heterogeneity within the groups and to recruit physicians who would serve as information-rich participants with a wide range for age, practice type, location, and education.^9,10 Recruitment involved a 2-step process:¹¹ First, urban and rural family physicians were randomly selected from lists provided by each local area’s licensing body; and second, physician recruiters (“leader figures”) from each local area identified physicians who they believed would provide an adequate variance of opinions.

Data Collection and Analysis

Data collection and analysis occurred iteratively.^12-14 After every focus group 3 investigators reviewed transcripts independently to identify the central issues that emerged. Over several meetings they compared and combined their independent analyses. Emerging themes were explored and expanded in subsequent focus groups. Although saturation¹⁵ had been achieved by the 8th focus group, we completed the final 2 groups to ensure regional representation. The second step in the analysis involved determining the similarities, differences, and potential connections among key words, phrases, and concepts within and among each focus group transcript. Finally, the themes and subcategories of all focus groups were compared and contrasted, and the quotes that most accurately illustrated the themes were identified.

Trustworthiness and Validation

All groups were audiotaped and transcribed verbatim, and extensive field notes were made during the focus groups and throughout the analysis. Validation of the data was achieved by conducting member-checking interviews¹⁶ with 15 information-rich participants from the focus groups after completion of the initial analysis. We then refined the themes.

Results

The physicians’ demographics Table 1 reflect the Canadian family physician population.¹⁷ Three major themes emerged from the analysis as determinants of cancer screening with unclear or controversial guidelines: patient factors, physician factors, and physician-patient relationship factors Table 2.

Patient Factors

Patient factors included expectations, anxieties, family history, peers, and media influences. Many of the physician participants commented that patient expectations and demands for screening were major determinants of their decision to screen when guidelines were unclear. Although they expressed discomfort with this behavior, physicians acknowledged being frequently swayed by patient demands. One said, “I think that if the patient comes into my office and he wants something, that influences me a hell of a lot.” (QC rural)

The physicians also suggested that patients’ anxieties about cancer were important. The higher the perceived anxiety, the more likely they were to order the relevant cancer screening test, even if the recommendations were unclear. A participant said, “If a patient came in with a particular anxiety and would be allayed by [screening]…I would go ahead and recommend it.” (BC rural)

The presence of any positive family history appeared to influence the physicians’ screening decisions, even if it was not a recognized risk factor in the cancer screening guideline. Physicians also felt that the media is an important influence on patients’ requests for screening. One of the physicians said, “I think the media really influences a lot of patients, and unfortunately it doesn’t always give them the correct information.” (ON urban)

Physician Factors

Physician factors included the perception of guidelines, clinical practice experience, the influence of colleagues, the distinction between the screening styles of specialists and family physicians, and the time and financial costs involved in performing the screening maneuver. The 2 most important determinants appeared to be the physicians’ perceptions of guidelines and their clinical experience.

The physicians’ perception of guidelines had 5 components Table 2. First, many physicians saw guidelines as just guidelines and not as directives. This was most evident when the guideline was viewed as unclear or conflicting. Second, many indicated that unclear guidelines are not guidelines at all and that their task was to individualize the screening decisions to patients and their situations. A participant said, “If they’re unclear, then you have to use your judgment in terms of the patient, your patient population, their follow-up ability, what their risk factors, age, etcetera, are.” (AB rural)

The third perception of guidelines was confusion due to the multiplicity and changing nature of guidelines. One physician said, “As far as breast cancer goes, it appears…things are still…in flux…changing all the time.” (ON urban)

The physicians’ degree of trust in the source of the guideline was the fourth component. A participant said, “If you get a guideline from a consensus group where…a group of specialists get together…including some family docs…certainly I would take that with more…clout.” (AB rural)

The fifth component was the perceived effectiveness of a particular screening maneuver. One physician said, “In the…years that we’ve been [screening] we have found cancers at the stage A and B…that have been easily looked after…. We have not had 1 patient pass away.” (AB rural)

Physicians viewed their clinical experience as influencing their cancer screening decisions, and many felt that they were much more likely to order screening tests early in their careers. A participant said, “In terms of screening there’s a tendency, especially when you’re young and keen and scared, that you’re gonna miss something.” (AB urban)

Physicians were concerned about missing a diagnosis of cancer. If they actually had such an experience, it subsequently lowered their threshold for cancer screening for some time afterward. One physician said, “Suppose you missed a case of colorectal cancer, and someone else finds it; then you tend to run gun shy for a long time and perhaps overinvestigate and over-refer for a time.” (BC rural)

Colleagues could positively or negatively influence screening decisions. A participant said, “Some guidelines come out, and somebody will say, ‘Oh that’s trash. I’m not going to do that.’ And then it’s a little hard for the rest of us to easily incorporate that.” (BC rural)

Family physicians also felt that they had a unique screening style compared with specialists, stemming from their continuing long-term relationships with their patients. One physician said, “The specialists will tend to jump on the blood test wagon a lot faster than I think we will, because again they don’t know the patients.” (AB urban)

Time and financial costs were also identified as important practice factors in the decision-making process. A participant said, “Economics also plays a part…because it can take…half an hour to explain to a patient why you don’t want to do something. It can take 2 minutes to do it.” (ON rural)

The Physician-Patient Relationship

Decisions about cancer screening took place within an interactive relationship between the patient and physician. Physicians characterized the relationship as one of varying intensity and depth, and there appeared to be 3 key points about the relationship in terms of cancer screening. First, the stronger and more positive the relationship, the more likely that the physician would feel free to engage the patient in a discussion about not performing a test that is based on an unclear or negative guideline. One physician said, “If you’ve known somebody for a long time and they come to you with something that you don’t think is right, it’s a little bit easier to talk to them.” (PEI rural)

Conversely, if the relationship was new or tenuous, physicians felt “The lack of a good relationship has an impact…they tend not to go along with your recommendations.” (AB rural)

The second point regarding the physician-patient relationship was that when a guideline was unclear, it often called for a different interaction than when the guideline was clear. It involved more information giving, presented in a manner that assisted the patient. One physician said, “I try to give the patient as much information as I have, in words that they will understand, so that they can come to an informed decision. That’s what I do when the guidelines are unclear.” (ON urban)

The process of information-giving promoted finding common ground, particularly when patients were requesting a screening maneuver not backed by clear evidence. One participant said:[For] patients who want tests that we don’t necessarily think are indicated, I follow the evidence, and that’s a negotiation. …an explanation of the evidence and then almost throw it back at the patient...it’s not medical-legal. It’s not economic. It’s between me and my patient. (QC urban)

Finally, many physician participants observed that even when the guidelines are clear, many cancer screening decisions are not. As a result, they noted that this often necessitated a process of finding common ground by engaging patients in mutual decision making.

Discussion

Many of the factors we identified have been described previously.^18-36 However, to the best of our knowledge they have not been combined into a comprehensive typology for cancer screening decision making that includes the physician-patient relationship and that deals with unclear and conflicting guidelines. One conceptual framework for the determinants of screening behavior²² is based on pediatric vaccinations and does not include unclear or controversial guidelines. Another more recent model is based on cancer care, not screening, but it does include some elements of communication between provider and patient.²³ Our proposed model of decision making regarding cancer screening Figure 1 is a modification of these frameworks based on our findings and is specific to decisions about cancer screening.

One unique feature of our model is that it is embedded in the physician-patient relationship. In particular, the quality of this relationship and the clarity of the recommendation appears to be most important. It involves an interactive process and mutual discussion with the patient. This ultimately includes finding agreement and culminates in a mutual agreement between the patient and the physician about the cancer screening maneuver.^37,38 Our findings are also in concordance with other literature on physician test-ordering. The concern about missing a diagnosis of cancer is similar to “chagrin bias” —when physicians are more likely to order inappropriate chest radiographs if they anticipated feeling regret if they missed a diagnosis of pneumonia.³⁹

Limitations

Although attempts were made to have regional representation from the entire country (Canada), the findings may not be transferable to other family medicine settings. Two of the 10 focus groups were conducted by teleconference, which may bias results, because it is a different data collection method. However, previous experience with telephone focus groups had been successful. (C.H., personal communication) The 2 teleconference groups did not provide markedly different data from those conducted in-person. Also, because of budget restraints, 5 different moderators were used. The investigators organized training sessions to standardize focus group moderation across sites; however, it is difficult to estimate the potential bias, given that moderators have their own styles. Finally, the data were based on the perspective of physicians and not patients.

Future Research

In the next phase of our study we will test the model’s factors quantitatively on a random sample of physicians and go through the same steps with a patient/consumer sample. Ultimately, we will use a modified model to design interventions to assist with the implementation of preventive services guidelines.

Conclusions

Our findings are of importance for those implementing preventive care guidelines. The focus group participants were clearly less happy with guidelines that were equivocal, and were less likely to follow them. Patient factors and the physician-patient relationship appear to be important in such cases. Although patient-oriented decision aids could help physicians in these situations, it is clearly more difficult to develop aids to guide patients in settings when the evidence is unclear, because the information required is more complex. The family physicians’ perceptions of the effectiveness of a particular screening test was very important, perhaps more important to the participants than the scientific evidence behind a guideline. Although personal experience is a weak and unscientific level of evidence subject to many biases, it is likely an important influence on cancer screening decision making in primary care, particularly when the evidence is uncertain. Future education efforts directed at primary care providers should address the influence of personal experience as well as the failure to attend to the level of evidence behind recommendations.

Acknowledgments

Our project was funded by a peer-reviewed grant from the Medical Research Council of Canada (grant number 14673) and by the Prince Edward Island Cancer Research Council. We wish to thank the staff of the Department of Family and Community Medicine, University of Toronto, for their tireless support of this project.

Every year physicians and patients receive hundreds of messages about guidelines for cancer screening. Ideally, physicians will adopt and adhere to the evidence-based clinical practice guidelines. By doing so, there is maximum application of a proven technology to those who can most benefit, and valuable resources are not wasted in examinations that are not based on good or fair evidence. However, many physicians are not adhering to cancer screening guidelines backed by good evidence.^1,2 Also, many are performing cancer screening procedures that are not recommended (either because of a lack of evidence or because they have been shown to be ineffective).³

Most of the literature on physician cancer screening has dealt with facilitators or barriers to the adoption of commonly recommended guidelines. These studies did not address the factors that affect physician practice when the guidelines are unclear or conflicting, or when they clearly recommend against the procedure. We defined an “unclear” guideline as a “C” recommendation (insufficient evidence to recommend the maneuver) from the Canadian Task Force on the Periodic Health Examination (CTFPHE).⁴ Guidelines were “conflicting” when at least 2 organizations gave different recommendations for the same cancer screening examination.

Despite the CTFPHE guidelines,⁴ inconsistencies in practice remain. Although the CTFPHE recommends that breast cancer screening begin at age 50 years, 59% of women aged 40 to 49 years reported having mammograms in 1994,⁵ a rate nearly equivalent to those aged 50 to 59 in Ontario.⁶ It is clear that family physicians—the major cancer screeners in many countries—are frequently not following guidelines. The use of ineffective procedures or those for which the evidence is unclear can waste scarce health resources and lead to harm for those whose test results are false positive. The objective of our study⁷ was to determine the factors involved in the cancer screening decisions of family physicians in situations where the clinical practice guidelines were unclear or conflicting (prostate-specific antigen testing, mammography for ages 40 to 49 years, colorectal tests) as opposed to when they were clear and uncontroversial.

Methods

Ten focus groups⁷ were conducted with 1 urban group and 1 rural group in each of 5 Canadian provinces: British Columbia (BC), Alberta (AB), Ontario (ON), Quebec (QC), and Prince Edward Island (PEI). Ethical approval was obtained from all participating institutions. We focused on family physicians because they are the main preventive health care providers in Canada, and physician recommendation is the most important predictor of whether an individual obtains a particular screening test.⁸ Eight focus groups were conducted face to face, and 2 were done by teleconference because of the geographic remoteness of 2 rural areas. Each focus group was co-facilitated by a local research assistant and 1 of the investigators. The focus group moderators participated in a 2-hour training session to ensure standardization across sites. The group sessions lasted approximately 60 to 90 minutes; all were audiotaped and transcribed verbatim.*Table w1

Recruitment and Sampling

We used maximum variation sampling to ensure heterogeneity within the groups and to recruit physicians who would serve as information-rich participants with a wide range for age, practice type, location, and education.^9,10 Recruitment involved a 2-step process:¹¹ First, urban and rural family physicians were randomly selected from lists provided by each local area’s licensing body; and second, physician recruiters (“leader figures”) from each local area identified physicians who they believed would provide an adequate variance of opinions.

Data Collection and Analysis

Data collection and analysis occurred iteratively.^12-14 After every focus group 3 investigators reviewed transcripts independently to identify the central issues that emerged. Over several meetings they compared and combined their independent analyses. Emerging themes were explored and expanded in subsequent focus groups. Although saturation¹⁵ had been achieved by the 8th focus group, we completed the final 2 groups to ensure regional representation. The second step in the analysis involved determining the similarities, differences, and potential connections among key words, phrases, and concepts within and among each focus group transcript. Finally, the themes and subcategories of all focus groups were compared and contrasted, and the quotes that most accurately illustrated the themes were identified.

Trustworthiness and Validation

All groups were audiotaped and transcribed verbatim, and extensive field notes were made during the focus groups and throughout the analysis. Validation of the data was achieved by conducting member-checking interviews¹⁶ with 15 information-rich participants from the focus groups after completion of the initial analysis. We then refined the themes.

Results

The physicians’ demographics Table 1 reflect the Canadian family physician population.¹⁷ Three major themes emerged from the analysis as determinants of cancer screening with unclear or controversial guidelines: patient factors, physician factors, and physician-patient relationship factors Table 2.

Patient Factors

Patient factors included expectations, anxieties, family history, peers, and media influences. Many of the physician participants commented that patient expectations and demands for screening were major determinants of their decision to screen when guidelines were unclear. Although they expressed discomfort with this behavior, physicians acknowledged being frequently swayed by patient demands. One said, “I think that if the patient comes into my office and he wants something, that influences me a hell of a lot.” (QC rural)

The physicians also suggested that patients’ anxieties about cancer were important. The higher the perceived anxiety, the more likely they were to order the relevant cancer screening test, even if the recommendations were unclear. A participant said, “If a patient came in with a particular anxiety and would be allayed by [screening]…I would go ahead and recommend it.” (BC rural)

The presence of any positive family history appeared to influence the physicians’ screening decisions, even if it was not a recognized risk factor in the cancer screening guideline. Physicians also felt that the media is an important influence on patients’ requests for screening. One of the physicians said, “I think the media really influences a lot of patients, and unfortunately it doesn’t always give them the correct information.” (ON urban)

Physician Factors

Physician factors included the perception of guidelines, clinical practice experience, the influence of colleagues, the distinction between the screening styles of specialists and family physicians, and the time and financial costs involved in performing the screening maneuver. The 2 most important determinants appeared to be the physicians’ perceptions of guidelines and their clinical experience.

The physicians’ perception of guidelines had 5 components Table 2. First, many physicians saw guidelines as just guidelines and not as directives. This was most evident when the guideline was viewed as unclear or conflicting. Second, many indicated that unclear guidelines are not guidelines at all and that their task was to individualize the screening decisions to patients and their situations. A participant said, “If they’re unclear, then you have to use your judgment in terms of the patient, your patient population, their follow-up ability, what their risk factors, age, etcetera, are.” (AB rural)

The third perception of guidelines was confusion due to the multiplicity and changing nature of guidelines. One physician said, “As far as breast cancer goes, it appears…things are still…in flux…changing all the time.” (ON urban)

The physicians’ degree of trust in the source of the guideline was the fourth component. A participant said, “If you get a guideline from a consensus group where…a group of specialists get together…including some family docs…certainly I would take that with more…clout.” (AB rural)

The fifth component was the perceived effectiveness of a particular screening maneuver. One physician said, “In the…years that we’ve been [screening] we have found cancers at the stage A and B…that have been easily looked after…. We have not had 1 patient pass away.” (AB rural)

Physicians viewed their clinical experience as influencing their cancer screening decisions, and many felt that they were much more likely to order screening tests early in their careers. A participant said, “In terms of screening there’s a tendency, especially when you’re young and keen and scared, that you’re gonna miss something.” (AB urban)

Physicians were concerned about missing a diagnosis of cancer. If they actually had such an experience, it subsequently lowered their threshold for cancer screening for some time afterward. One physician said, “Suppose you missed a case of colorectal cancer, and someone else finds it; then you tend to run gun shy for a long time and perhaps overinvestigate and over-refer for a time.” (BC rural)

Colleagues could positively or negatively influence screening decisions. A participant said, “Some guidelines come out, and somebody will say, ‘Oh that’s trash. I’m not going to do that.’ And then it’s a little hard for the rest of us to easily incorporate that.” (BC rural)

Family physicians also felt that they had a unique screening style compared with specialists, stemming from their continuing long-term relationships with their patients. One physician said, “The specialists will tend to jump on the blood test wagon a lot faster than I think we will, because again they don’t know the patients.” (AB urban)

Time and financial costs were also identified as important practice factors in the decision-making process. A participant said, “Economics also plays a part…because it can take…half an hour to explain to a patient why you don’t want to do something. It can take 2 minutes to do it.” (ON rural)

The Physician-Patient Relationship

Decisions about cancer screening took place within an interactive relationship between the patient and physician. Physicians characterized the relationship as one of varying intensity and depth, and there appeared to be 3 key points about the relationship in terms of cancer screening. First, the stronger and more positive the relationship, the more likely that the physician would feel free to engage the patient in a discussion about not performing a test that is based on an unclear or negative guideline. One physician said, “If you’ve known somebody for a long time and they come to you with something that you don’t think is right, it’s a little bit easier to talk to them.” (PEI rural)

Conversely, if the relationship was new or tenuous, physicians felt “The lack of a good relationship has an impact…they tend not to go along with your recommendations.” (AB rural)

The second point regarding the physician-patient relationship was that when a guideline was unclear, it often called for a different interaction than when the guideline was clear. It involved more information giving, presented in a manner that assisted the patient. One physician said, “I try to give the patient as much information as I have, in words that they will understand, so that they can come to an informed decision. That’s what I do when the guidelines are unclear.” (ON urban)

The process of information-giving promoted finding common ground, particularly when patients were requesting a screening maneuver not backed by clear evidence. One participant said:[For] patients who want tests that we don’t necessarily think are indicated, I follow the evidence, and that’s a negotiation. …an explanation of the evidence and then almost throw it back at the patient...it’s not medical-legal. It’s not economic. It’s between me and my patient. (QC urban)

Finally, many physician participants observed that even when the guidelines are clear, many cancer screening decisions are not. As a result, they noted that this often necessitated a process of finding common ground by engaging patients in mutual decision making.

Discussion

Many of the factors we identified have been described previously.^18-36 However, to the best of our knowledge they have not been combined into a comprehensive typology for cancer screening decision making that includes the physician-patient relationship and that deals with unclear and conflicting guidelines. One conceptual framework for the determinants of screening behavior²² is based on pediatric vaccinations and does not include unclear or controversial guidelines. Another more recent model is based on cancer care, not screening, but it does include some elements of communication between provider and patient.²³ Our proposed model of decision making regarding cancer screening Figure 1 is a modification of these frameworks based on our findings and is specific to decisions about cancer screening.

One unique feature of our model is that it is embedded in the physician-patient relationship. In particular, the quality of this relationship and the clarity of the recommendation appears to be most important. It involves an interactive process and mutual discussion with the patient. This ultimately includes finding agreement and culminates in a mutual agreement between the patient and the physician about the cancer screening maneuver.^37,38 Our findings are also in concordance with other literature on physician test-ordering. The concern about missing a diagnosis of cancer is similar to “chagrin bias” —when physicians are more likely to order inappropriate chest radiographs if they anticipated feeling regret if they missed a diagnosis of pneumonia.³⁹

Limitations

Although attempts were made to have regional representation from the entire country (Canada), the findings may not be transferable to other family medicine settings. Two of the 10 focus groups were conducted by teleconference, which may bias results, because it is a different data collection method. However, previous experience with telephone focus groups had been successful. (C.H., personal communication) The 2 teleconference groups did not provide markedly different data from those conducted in-person. Also, because of budget restraints, 5 different moderators were used. The investigators organized training sessions to standardize focus group moderation across sites; however, it is difficult to estimate the potential bias, given that moderators have their own styles. Finally, the data were based on the perspective of physicians and not patients.

Future Research

In the next phase of our study we will test the model’s factors quantitatively on a random sample of physicians and go through the same steps with a patient/consumer sample. Ultimately, we will use a modified model to design interventions to assist with the implementation of preventive services guidelines.

Conclusions

Our findings are of importance for those implementing preventive care guidelines. The focus group participants were clearly less happy with guidelines that were equivocal, and were less likely to follow them. Patient factors and the physician-patient relationship appear to be important in such cases. Although patient-oriented decision aids could help physicians in these situations, it is clearly more difficult to develop aids to guide patients in settings when the evidence is unclear, because the information required is more complex. The family physicians’ perceptions of the effectiveness of a particular screening test was very important, perhaps more important to the participants than the scientific evidence behind a guideline. Although personal experience is a weak and unscientific level of evidence subject to many biases, it is likely an important influence on cancer screening decision making in primary care, particularly when the evidence is uncertain. Future education efforts directed at primary care providers should address the influence of personal experience as well as the failure to attend to the level of evidence behind recommendations.

Acknowledgments

Our project was funded by a peer-reviewed grant from the Medical Research Council of Canada (grant number 14673) and by the Prince Edward Island Cancer Research Council. We wish to thank the staff of the Department of Family and Community Medicine, University of Toronto, for their tireless support of this project.

Every year physicians and patients receive hundreds of messages about guidelines for cancer screening. Ideally, physicians will adopt and adhere to the evidence-based clinical practice guidelines. By doing so, there is maximum application of a proven technology to those who can most benefit, and valuable resources are not wasted in examinations that are not based on good or fair evidence. However, many physicians are not adhering to cancer screening guidelines backed by good evidence.^1,2 Also, many are performing cancer screening procedures that are not recommended (either because of a lack of evidence or because they have been shown to be ineffective).³

Most of the literature on physician cancer screening has dealt with facilitators or barriers to the adoption of commonly recommended guidelines. These studies did not address the factors that affect physician practice when the guidelines are unclear or conflicting, or when they clearly recommend against the procedure. We defined an “unclear” guideline as a “C” recommendation (insufficient evidence to recommend the maneuver) from the Canadian Task Force on the Periodic Health Examination (CTFPHE).⁴ Guidelines were “conflicting” when at least 2 organizations gave different recommendations for the same cancer screening examination.

Despite the CTFPHE guidelines,⁴ inconsistencies in practice remain. Although the CTFPHE recommends that breast cancer screening begin at age 50 years, 59% of women aged 40 to 49 years reported having mammograms in 1994,⁵ a rate nearly equivalent to those aged 50 to 59 in Ontario.⁶ It is clear that family physicians—the major cancer screeners in many countries—are frequently not following guidelines. The use of ineffective procedures or those for which the evidence is unclear can waste scarce health resources and lead to harm for those whose test results are false positive. The objective of our study⁷ was to determine the factors involved in the cancer screening decisions of family physicians in situations where the clinical practice guidelines were unclear or conflicting (prostate-specific antigen testing, mammography for ages 40 to 49 years, colorectal tests) as opposed to when they were clear and uncontroversial.

Methods

Ten focus groups⁷ were conducted with 1 urban group and 1 rural group in each of 5 Canadian provinces: British Columbia (BC), Alberta (AB), Ontario (ON), Quebec (QC), and Prince Edward Island (PEI). Ethical approval was obtained from all participating institutions. We focused on family physicians because they are the main preventive health care providers in Canada, and physician recommendation is the most important predictor of whether an individual obtains a particular screening test.⁸ Eight focus groups were conducted face to face, and 2 were done by teleconference because of the geographic remoteness of 2 rural areas. Each focus group was co-facilitated by a local research assistant and 1 of the investigators. The focus group moderators participated in a 2-hour training session to ensure standardization across sites. The group sessions lasted approximately 60 to 90 minutes; all were audiotaped and transcribed verbatim.*Table w1

Recruitment and Sampling

We used maximum variation sampling to ensure heterogeneity within the groups and to recruit physicians who would serve as information-rich participants with a wide range for age, practice type, location, and education.^9,10 Recruitment involved a 2-step process:¹¹ First, urban and rural family physicians were randomly selected from lists provided by each local area’s licensing body; and second, physician recruiters (“leader figures”) from each local area identified physicians who they believed would provide an adequate variance of opinions.

Data Collection and Analysis

Data collection and analysis occurred iteratively.^12-14 After every focus group 3 investigators reviewed transcripts independently to identify the central issues that emerged. Over several meetings they compared and combined their independent analyses. Emerging themes were explored and expanded in subsequent focus groups. Although saturation¹⁵ had been achieved by the 8th focus group, we completed the final 2 groups to ensure regional representation. The second step in the analysis involved determining the similarities, differences, and potential connections among key words, phrases, and concepts within and among each focus group transcript. Finally, the themes and subcategories of all focus groups were compared and contrasted, and the quotes that most accurately illustrated the themes were identified.

Trustworthiness and Validation

All groups were audiotaped and transcribed verbatim, and extensive field notes were made during the focus groups and throughout the analysis. Validation of the data was achieved by conducting member-checking interviews¹⁶ with 15 information-rich participants from the focus groups after completion of the initial analysis. We then refined the themes.

Results

The physicians’ demographics Table 1 reflect the Canadian family physician population.¹⁷ Three major themes emerged from the analysis as determinants of cancer screening with unclear or controversial guidelines: patient factors, physician factors, and physician-patient relationship factors Table 2.

Patient Factors

Patient factors included expectations, anxieties, family history, peers, and media influences. Many of the physician participants commented that patient expectations and demands for screening were major determinants of their decision to screen when guidelines were unclear. Although they expressed discomfort with this behavior, physicians acknowledged being frequently swayed by patient demands. One said, “I think that if the patient comes into my office and he wants something, that influences me a hell of a lot.” (QC rural)

The physicians also suggested that patients’ anxieties about cancer were important. The higher the perceived anxiety, the more likely they were to order the relevant cancer screening test, even if the recommendations were unclear. A participant said, “If a patient came in with a particular anxiety and would be allayed by [screening]…I would go ahead and recommend it.” (BC rural)

The presence of any positive family history appeared to influence the physicians’ screening decisions, even if it was not a recognized risk factor in the cancer screening guideline. Physicians also felt that the media is an important influence on patients’ requests for screening. One of the physicians said, “I think the media really influences a lot of patients, and unfortunately it doesn’t always give them the correct information.” (ON urban)

Physician Factors

Physician factors included the perception of guidelines, clinical practice experience, the influence of colleagues, the distinction between the screening styles of specialists and family physicians, and the time and financial costs involved in performing the screening maneuver. The 2 most important determinants appeared to be the physicians’ perceptions of guidelines and their clinical experience.

The physicians’ perception of guidelines had 5 components Table 2. First, many physicians saw guidelines as just guidelines and not as directives. This was most evident when the guideline was viewed as unclear or conflicting. Second, many indicated that unclear guidelines are not guidelines at all and that their task was to individualize the screening decisions to patients and their situations. A participant said, “If they’re unclear, then you have to use your judgment in terms of the patient, your patient population, their follow-up ability, what their risk factors, age, etcetera, are.” (AB rural)

The third perception of guidelines was confusion due to the multiplicity and changing nature of guidelines. One physician said, “As far as breast cancer goes, it appears…things are still…in flux…changing all the time.” (ON urban)

The physicians’ degree of trust in the source of the guideline was the fourth component. A participant said, “If you get a guideline from a consensus group where…a group of specialists get together…including some family docs…certainly I would take that with more…clout.” (AB rural)

The fifth component was the perceived effectiveness of a particular screening maneuver. One physician said, “In the…years that we’ve been [screening] we have found cancers at the stage A and B…that have been easily looked after…. We have not had 1 patient pass away.” (AB rural)

Physicians viewed their clinical experience as influencing their cancer screening decisions, and many felt that they were much more likely to order screening tests early in their careers. A participant said, “In terms of screening there’s a tendency, especially when you’re young and keen and scared, that you’re gonna miss something.” (AB urban)

Physicians were concerned about missing a diagnosis of cancer. If they actually had such an experience, it subsequently lowered their threshold for cancer screening for some time afterward. One physician said, “Suppose you missed a case of colorectal cancer, and someone else finds it; then you tend to run gun shy for a long time and perhaps overinvestigate and over-refer for a time.” (BC rural)

Colleagues could positively or negatively influence screening decisions. A participant said, “Some guidelines come out, and somebody will say, ‘Oh that’s trash. I’m not going to do that.’ And then it’s a little hard for the rest of us to easily incorporate that.” (BC rural)

Family physicians also felt that they had a unique screening style compared with specialists, stemming from their continuing long-term relationships with their patients. One physician said, “The specialists will tend to jump on the blood test wagon a lot faster than I think we will, because again they don’t know the patients.” (AB urban)

Time and financial costs were also identified as important practice factors in the decision-making process. A participant said, “Economics also plays a part…because it can take…half an hour to explain to a patient why you don’t want to do something. It can take 2 minutes to do it.” (ON rural)

The Physician-Patient Relationship

Decisions about cancer screening took place within an interactive relationship between the patient and physician. Physicians characterized the relationship as one of varying intensity and depth, and there appeared to be 3 key points about the relationship in terms of cancer screening. First, the stronger and more positive the relationship, the more likely that the physician would feel free to engage the patient in a discussion about not performing a test that is based on an unclear or negative guideline. One physician said, “If you’ve known somebody for a long time and they come to you with something that you don’t think is right, it’s a little bit easier to talk to them.” (PEI rural)

Conversely, if the relationship was new or tenuous, physicians felt “The lack of a good relationship has an impact…they tend not to go along with your recommendations.” (AB rural)

The second point regarding the physician-patient relationship was that when a guideline was unclear, it often called for a different interaction than when the guideline was clear. It involved more information giving, presented in a manner that assisted the patient. One physician said, “I try to give the patient as much information as I have, in words that they will understand, so that they can come to an informed decision. That’s what I do when the guidelines are unclear.” (ON urban)

The process of information-giving promoted finding common ground, particularly when patients were requesting a screening maneuver not backed by clear evidence. One participant said:[For] patients who want tests that we don’t necessarily think are indicated, I follow the evidence, and that’s a negotiation. …an explanation of the evidence and then almost throw it back at the patient...it’s not medical-legal. It’s not economic. It’s between me and my patient. (QC urban)

Finally, many physician participants observed that even when the guidelines are clear, many cancer screening decisions are not. As a result, they noted that this often necessitated a process of finding common ground by engaging patients in mutual decision making.

Discussion

Many of the factors we identified have been described previously.^18-36 However, to the best of our knowledge they have not been combined into a comprehensive typology for cancer screening decision making that includes the physician-patient relationship and that deals with unclear and conflicting guidelines. One conceptual framework for the determinants of screening behavior²² is based on pediatric vaccinations and does not include unclear or controversial guidelines. Another more recent model is based on cancer care, not screening, but it does include some elements of communication between provider and patient.²³ Our proposed model of decision making regarding cancer screening Figure 1 is a modification of these frameworks based on our findings and is specific to decisions about cancer screening.

One unique feature of our model is that it is embedded in the physician-patient relationship. In particular, the quality of this relationship and the clarity of the recommendation appears to be most important. It involves an interactive process and mutual discussion with the patient. This ultimately includes finding agreement and culminates in a mutual agreement between the patient and the physician about the cancer screening maneuver.^37,38 Our findings are also in concordance with other literature on physician test-ordering. The concern about missing a diagnosis of cancer is similar to “chagrin bias” —when physicians are more likely to order inappropriate chest radiographs if they anticipated feeling regret if they missed a diagnosis of pneumonia.³⁹

Limitations

Although attempts were made to have regional representation from the entire country (Canada), the findings may not be transferable to other family medicine settings. Two of the 10 focus groups were conducted by teleconference, which may bias results, because it is a different data collection method. However, previous experience with telephone focus groups had been successful. (C.H., personal communication) The 2 teleconference groups did not provide markedly different data from those conducted in-person. Also, because of budget restraints, 5 different moderators were used. The investigators organized training sessions to standardize focus group moderation across sites; however, it is difficult to estimate the potential bias, given that moderators have their own styles. Finally, the data were based on the perspective of physicians and not patients.

Future Research

In the next phase of our study we will test the model’s factors quantitatively on a random sample of physicians and go through the same steps with a patient/consumer sample. Ultimately, we will use a modified model to design interventions to assist with the implementation of preventive services guidelines.

Conclusions

Our findings are of importance for those implementing preventive care guidelines. The focus group participants were clearly less happy with guidelines that were equivocal, and were less likely to follow them. Patient factors and the physician-patient relationship appear to be important in such cases. Although patient-oriented decision aids could help physicians in these situations, it is clearly more difficult to develop aids to guide patients in settings when the evidence is unclear, because the information required is more complex. The family physicians’ perceptions of the effectiveness of a particular screening test was very important, perhaps more important to the participants than the scientific evidence behind a guideline. Although personal experience is a weak and unscientific level of evidence subject to many biases, it is likely an important influence on cancer screening decision making in primary care, particularly when the evidence is uncertain. Future education efforts directed at primary care providers should address the influence of personal experience as well as the failure to attend to the level of evidence behind recommendations.

Acknowledgments

Our project was funded by a peer-reviewed grant from the Medical Research Council of Canada (grant number 14673) and by the Prince Edward Island Cancer Research Council. We wish to thank the staff of the Department of Family and Community Medicine, University of Toronto, for their tireless support of this project.