We conducted six focus groups with 46 participants between October 8, 2015 and January 28, 2016. There were 4 to 11 participants in each focus group. PCPs (n = 16; 50% male) participated in one of two focus groups; gastroenterologists (n = 15 including 4 residents; 100% male) in another one of two groups, and surgeons (n = 15; 86.7% male) in the remaining two focus groups. The participating gastroenterologists and surgeons were all endoscopists and, hence, when referring to both the groups together, we refer to “endoscopists.” PCPs had less than 1 to 33 years of practice (n = 14; median = 17) and endoscopists, not including residents, had 2 to 38 years of practice (n = 21; median = 15). Data for years of practice were missing for two PCPs and five endoscopists.
Participants asserted that continuity of care across PCPs and endoscopists was very important to provide high quality care to patients. The complexity of the system, particularly regarding patterns of communication, and collaboration through the distribution of responsibility among the patient, PCP, and endoscopist could work well in many instances but also presented numerous challenges for promoting safe and efficient referral and follow-up. A central intake service that included the potential for an increase in patients attending “direct to scope” could streamline services and, at the same time, create new challenges for communication, understanding of distribution of responsibility, and, ultimately, the efficiency and quality of care.
The findings from this study are reported below in themes of a) communication for continuity of care b) understanding the distribution of responsibility and c) the perceived benefits and challenges of a central intake system for colonoscopies. When differences among the three types of provider were evident in the matrix analysis, we report the ways in which perceptions differed.
Communication for continuity of care
Figure 1 illustrates the information that each group requires and the potential lines of communication for information. Participants in the focus groups described these lines of communication along with inconsistencies in communication processes across practitioners. Communication challenges included insufficient information, inconsistent information, difficulties in interpreting important information, and breakdowns in the communication channels. These challenges were evident both pre- and post-colonoscopy.
Pre-procedure communication
Pre-procedure communication from the PCPs could go directly to the endoscopist. However, with the development of a central intake system, the information was increasingly passed through that system, creating an intermediary step along the path.
Endoscopists’ perspectives
The endoscopist groups discussed inconsistencies in the amount and type of information they received from PCPs at the time of referral. One surgeon noted, “Most (of my consults) have appropriate amounts of information on them. But it really depends on whoever the referring doctor is and how much interest they have in that particular disease process.” The challenge related to these inconsistencies was summarized in one surgeon focus group as, “we don’t have a standard of information that should be present on all (patients) prior to the… consult being sent.” Both surgeons and gastroenterologists noted that referrals often lacked details of medical and family history, and blood work reports. This was problematic particularly in some direct to scope situations when the endoscopist considered that there was insufficient information to ensure a safe procedure or to limit unnecessary procedures. Therefore, many endoscopists preferred to see the patient prior to the procedure to obtain necessary information. One gastroenterologist said, “I wouldn’t feel comfortable with (a patient) who I’ve never met because… a good percentage of the time, (patients) don’t need another colonoscopy… They have already had it done. It’s just not put in their referral history.” Another noted that he sometimes will “get a sense (from the referral that the) patient doesn’t need a scope” but will make that determination after seeing the patient himself. Another said, “I have this concern that many people, a large number of people, are getting colonoscopies unnecessarily, and the main reason is that no one’s ever sat down and talked to them.”
One endoscopist noted that “a lot of the family physicians are doing an excellent job educating their patients,” but went on to say that some patients arrived with insufficient information about why they were being referred for a colonoscopy. In other cases, insufficient patient understanding of the reason for the colonoscopy could result in patients not arriving for the procedure after being scheduled. Some endoscopists reported that a pre-clinic appointment was helpful for sharing information about the procedure, particularly with patients who had little knowledge about the purpose or process. This conversation also could allow patients to decline the procedure once they learned more about the procedure and potential associated benefits and risks. One surgeon said, “I also talk a lot to my patients about the risks and benefits (of the colonoscopy), and I would say, not uncommonly, I have patients decline a colonoscopy right there.” In contrast, some endoscopists reported that some patients were very well informed about the procedure and viewed the pre-procedure appointment as a waste of time. This was also true of people who were worried about a potential cancer diagnosis. One surgeon said, “There are patients who worry about cancer, (instead of waiting) to be seen by somebody to explain it, (they prefer) going directly for their scope and getting it done as quickly as possible and getting their problem dealt with.”
Obtaining consent for the procedure was an important topic of discussion among focus group participants. Endoscopists thought it was important for patients to have information about the risks and benefits in advance of direct to scope procedures. They expressed concerns about getting consent on the day of the procedure, believing that it was difficult for a patient to decline once they had prepared for colonoscopy (including taking the required laxative) and come to the facility. One surgeon stated, “Are people going to say ‘no’ when they’ve done a full bowel prep? And certainly, at that point, people don’t.” Some felt that it was important for PCPs to communicate the information supporting an informed decision (benefits and risks) in advance, to provide patients the information and time to decide whether they wanted the procedure. One endoscopist talked about the process of sending a consent-related brochure to the patient in advance of the procedure and then being available to answer the patient’s or family member’s questions.
PCPs’ perspectives
In the focus groups, PCPs discussed their responsibility to inform patients about the reasons for the procedure and some acknowledged their responsibility to obtain consent for the referral, including discussing the potential risks and benefits of a colonoscopy. Some reported feeling comfortable sharing this information with patients, as long as they had easy access to accurate and current resources. One PCP said, “I’m comfortable with (providing information about the procedure to patients). It certainly helps to have resources to do it…. if that pamphlet was right there and you just printed it off right in front of you. It would be designed perfectly… so that it ensures that I say the right things and I give (information to the patient about) the right complications.”
One of the areas in which PCPs did not feel comfortable in providing information to patients was related to bowel preparation. They noted that different endoscopists had different preferences for bowel preparation and that it was not helpful for the PCP to provide information that may contradict information received later from the endoscopist. One PCP said, “My experience is that there isn’t really consistency in that (bowel preparation instructions). It switches and I don’t know what it will be switched to.”
Post-procedure communication
There was consensus across all six focus groups that a major challenge was communication after the colonoscopy to ensure that PCPs and patients understood the results and that recommendations were followed. There was wide variation in the ways that endoscopists communicated findings and follow-up recommendations to patients and PCPs.
Communication with patients
Endoscopists’ perspective
There was great diversity in approaches to communicating the results of the colonoscopy. Communication sometimes occurred verbally directly after the procedure between the endoscopist and the patient, the person accompanying them, or both. With the exception of times when the endoscopist felt that an immediate referral to, for example, an oncologist, was necessary, there was a widespread view that verbal discussion with the patient immediately after the procedure was ineffective. Most patients would be under the influence of the sedating medications which may impair memory. Some endoscopists reported that they provided patients a written summary of the findings that could include photographs of findings observed during colonoscopy. These reports were generated in facilities with the necessary computer software. In other cases, when the appropriate technology was not available, endoscopists provided hand-written notes. Some endoscopists called the patient back for a follow-up visit although this was more frequently done when there were pathological findings. However, one endoscopist who reported he saw “more patients in follow-up than maybe some other endoscopists,” indicated “I haven’t found it reliable over the years to trust the (PCP) to relate the specialist’s information and implication of (the findings).” This person also believed that follow-up with the endoscopist was “more satisfying for the patient.” Communication with patients requiring language interpretation presented additional challenges. One surgeon noted the need to have an interpreter available if there was a cancer diagnosis. He said, “I just don’t want to be going through the family (for discussing the presence of cancer).”
An area of concern was whether patients would remember when they should return for follow-up, particularly when the recommended follow-up colonoscopy was several years later. One surgeon indicated that it was important for patients to keep track of follow-up times in addition to having a flag in the medical record and informing the PCP. He said, “And I usually say, (to the patient), five years goes by a lot faster than you think, so what you should really do is get your calendar out and mark about four years on the calendar. And when four years rolls around, call my office again and we’ll get you back in to see me.”
PCPs’ perspectives
PCPs noted that patients sometimes turned to them with questions about the recommendations from the endoscopists. PCPs appreciated having the results before the patient returned to their office. Having timely and clear results and recommendations helped PCPs to interpret findings and reinforce recommendations. However, as noted in the next section, there were inconsistencies in the type and quality of information provided to PCPs.
Communication between the Endoscopist and PCP
There was consensus among all groups that it was important for the PCP to receive information about the results of the colonoscopy, along with recommendations for follow-up. However, as one endoscopist noted, “The big issue is communication after the scope.” Similar to communication with patients, there was great diversity of endoscopists’ approaches to this communication. The timeliness of the communication varied. One PCP noted that sometimes “I get a report back within a day or two of the colonoscopy or the day of the colonoscopy and that’s fantastic; other specialists, it’s three to six month later.” Some PCPs noted that, at times, the report and recommendations from the endoscopist didn’t come at the same time as the pathology report, which created some confusion. One endoscopist addressed the uneven timing of when the colonoscopy report was sent and when the pathology report was returned by writing a note on the pathology report if the pathology findings suggested a different recommendation than the earlier post-procedure report. However, others reported they had to pull the chart or the colonoscopy report to recall the initial recommendation if it was not available with the pathology report. Another challenge for PCPs was the variability in the clarity of the results and recommendations. This led one PCP to send consults for colonoscopies to those specialists who wrote clear reports.
Clarifying responsibility
Participants noted that inconsistency of communication approaches meant that there was often lack of clarity concerning responsibility for arranging required follow-up after a colonoscopy. When the procedure indicated a high risk diagnosis, (e.g., cancer or Lynch syndrome), endoscopists in the focus group were most likely to take immediate action by calling the PCP, making a referral to an oncologist, and/or booking the patient for a follow-up appointment or colonoscopy. One endoscopist stated, “If I suspect that they have Lynch syndrome … as soon as they have (the colonoscopy) they are rebooked in a year for another colonoscopy. If they (have familial adenomatous polyposis), it’s the same.” This specialist felt that it was important for patients with these conditions to form a relationship with a consistent endoscopist and took responsibility for follow-up.
In contrast, the responsibility was more ambiguous when patients had colorectal polyps that were not likely to be cancerous, or had negative colonoscopy findings. In those cases, there were inconsistencies in approaches and participants voiced concern about two problems. First, some patients were being referred for colonoscopies too frequently. One endoscopist stated, “I get letters from docs saying, you know, this person has been getting scopes every year because they have polyps, and then I’ll go over their scopes and reports and realize they’re getting scoped way too often.” The other concern was for patients not having follow-up at intervals recommended by guidelines. Ensuring that the PCP had clear information from the endoscopist about the recommended follow-up was an approach used by some endoscopists. However, it was not always clear who would take responsibility for keeping track of and scheduling the recommended follow-up. One PCP stated, “There has to be a very clear understanding of whose role it is to do what.” In addition, participants acknowledged that some patients lived in communities in which there was a frequent turnover of PCPs and were concerned that a lengthy timeframe for the patient’s follow-up appointment would not be adequately monitored. Many endoscopists did not book follow-up colonoscopies and were concerned that patients would not be referred for the recommended follow-up. One approach by endoscopists focused on ensuring redundancy in communication of recommendations that could include a note on the medical record and informing both the PCP and the patient. One endoscopist said, “I think the more checks that you have in place, the less likely someone is going to fall through the cracks.”
Benefits and risks of a central intake system for colonoscopy services
At the time of the study, a central intake (CI) system was being implemented in the region on a stepwise basis. Some participants had experience with CI while others did not. However, many participants had opinions about the risks and benefits of the system.
Concerns from PCPs included not being able to choose to refer to specific endoscopists whom they felt met a high standard. One PCP said, “(I need) to be comforted by knowing that, whoever is in charge of (central intake) knows each one of these endoscopists and would vouch for them, would be willing to have their own colonoscopy by each one of these people.”
PCPs were also concerned that CI would not allow them to identify patients who need more continuity or special attention from the endoscopist. This concern was shared by endoscopists who believed that lack of attention to engaging patients, or their support networks, could result in patients not arriving for the procedure or arriving with poor preparation. This issue was particularly salient for patients who had limited ability to speak or read English, who lived in remote communities, or who had limited access to a private toilet. One endoscopist commented, “I think central intake works very well for the population who has access to resources but for the people who don’t, it’s difficult.”
Participants also noted the benefits of CI in terms of efficiency as well as standardization of processes. A standardized referral form was viewed as a potential way to ensure that all PCPs provided the necessary referral information. Standardization of follow-up was also viewed as a benefit. One endoscopist said, “One of the biggest advantages of this central intake system would be the ability to standardize some of these things: a standardized follow-up.”
Summary of member checking responses
Respondents agreed with the content of the focus group summary and most offered suggestions for improving the system. Several called for development of a comprehensive quality improvement plan that would identify priority issues and address them. Respondents identified several strategies for improving communication amongst the patient, PCP and endoscopist, with CI often having an intermediary role. Strategies included the development of brochure(s) provided to patients well in advance of the procedure, with easy to understand information about the procedure, the benefits and risks, and consent. Education of PCPs about colonoscopies with clear indicators for referral was also identified as an important strategy that could also include a feedback loop to PCPs to inform them about referrals that did not meet the criteria for colonoscopy. Several respondents also noted the importance of routinely including both the PCP and the patient in correspondence outlining follow-up plans and recommendations. One respondent advocated for the development of a “robust referral management system” that was accessible to patients to view. In the context of these suggested strategies, several respondents highlighted the need for flexibility in the system, in particular, for patients with low literacy, who live in rural or remote communities, or have limited resources.
