The articles in this supplement were commissioned based on participation in evaluating the Centers for Disease Control and Prevention-funded Colorectal Cancer Screening Demonstration Program.
The opinions or views expressed in this supplement are those of the authors and do not necessarily reflect the opinions or recommendations of the journal editors, the American Cancer Society, John Wiley & Sons, Inc., or the Centers for Disease Control and Prevention.
At the time of this project, Dr. Cavanagh was at the Department of Preventive Medicine, Stony Brook University Medical Center, Stony Brook, NY, and Dr. Anderson, was at the Department of Gastroenterology and Hepatology, Stony Brook University Medical Center, Stony Brook, NY.
We thank all of the collaborators of the Stony Brook University Medical Center SCOPE Project, who are listed elsewhere in this supplement.
One of 5 nationally funded Centers for Disease Control and Prevention Colorectal Cancer (CRC) Screening Demonstration Programs, Project SCOPE, was conducted at an academic medical center and provided colonoscopy screening at no cost to underserved minority patients from local community health centers.
Established barriers to CRC screening (eg, financial, language, transportation) among the target population were addressed through clinical coordination of care by key project staff. The use of a clinician with a patient navigator allowed for the performance of precolonoscopy “telephone visits” instead of office visits to the gastroenterologist in virtually all patients. The clinician elicited information relevant to making screening decisions (eg, past medical and surgical history, focused review of systems, medication/supplement use, CRC screening history). The patient navigator reduced barriers, including, but not limited to, scheduling, transportation, and physical navigation of the medical center on the day of colonoscopy.
Preprogram preparation was vital in laying groundwork for the project, yet enhancements to the program were ongoing throughout the screening period. Detailed referral forms from primary care physicians, coupled with information obtained during telephone interviews, facilitated high colonoscopy completion rates and excellent patient satisfaction. Similarly valuable was the employment of a bilingual patient navigator, who provided practical and emotional patient support.
An academic medical center provided an optimal setting as one of the five sites for the Centers for Disease Control and Prevention's (CDC's) Colorectal Cancer Screening Demonstration Program. Stony Brook University Medical Center's Department of Preventive Medicine, in partnership with the Division of Gastroenterology, supplied the team for the Suffolk County Preventive Endoscopy Project (Project SCOPE), which provided colonoscopy screening at no cost to eligible patients in the Suffolk County Department of Health Services community health centers. Considerable prior experience of the project staff with barriers to cancer screening, and CRC screening in particular, among disadvantaged populations[1, 2] provided the groundwork for the described demonstration. In particular, this prior research identified existing disparities in the use of colonoscopy as a primary screening method among the disadvantaged that were largely because of the lack of availability of colonoscopy resources for the uninsured or under-insured within their local community. Collaboration of an academic medical center and a network of community health centers provided a unique model in which to describe the lessons learned with regard to reducing barriers to colonoscopy screening for an underserved suburban population (Table 1).
Table 1. Distribution of Project SCOPE Patient Characteristics: Sex and Ethnicity
No. of Patients (%)
Abbreviations: SCOPE indicates Suffolk County Preventive Endoscopy.
Non-Hispanic other/Hispanic unknown
Conventional provision of screening colonoscopy is generally preceded by a preprocedure consultation with an endoscopist. A newer model of a direct endoscopic referral system, or direct-access colonoscopy, is the practice whereby patients are referred directly from the primary care provider (PCP) to the endoscopist without the precolonoscopy office consultation. This practice, first described in 1979, has increasingly gained popularity, and it has been demonstrated that direct-access colonoscopy decreases wait times, thereby increasing adherence to screening recommendations.[3-5] The National Colorectal Cancer Roundtable defines a high-quality, open-access program as one that optimizes scheduling, referrals, preparation instruction, reporting, follow-up, and, finally, a method for addressing “special situations.” It has been reported that patient navigation is a vital patient advocacy tool in executing an effective, high-quality, open-access system for colonoscopy, especially in disadvantaged populations.[6-9] Patient navigation also increases access to timely, quality care by reducing barriers and providing culturally sensitive “logistic and emotional support.” Admittedly, one of the most significant challenges the National Colorectal Cancer Roundtable recognizes to direct-access colonoscopy is the identification of which patients are at risk for procedural complications and, thus, would benefit from a precolonoscopy office visit. Project SCOPE uniquely addresses the gap between preprocedure office consultation and PCP direct endoscopic referral system by implementing clinician care coordination to evaluate the suitability of direct endoscopic referral and combining it with patient navigation to reduce patient, physician, and facility barriers.
The disparity responsible for the under use of screening colonoscopy by minority populations, compared with insured individuals, is largely attributable to known barriers among low-income populations, such as financial barriers,[11, 12] lack of information,[11, 12] transportation barriers, need for scheduling assistance, institutional challenges, need for emotional support, physician-patient communication barriers,[11, 13] and language barriers.[11, 12] The literature reveals that a lower level of perceived barriers to CRC screening among minority populations correlates with greater adherence to screening completion. Many of the above cited barriers were identified by the project staff in a prior grant studying the same population targeted for Project SCOPE. All of the above listed barriers were addressed in the SCOPE protocol through clinical coordination of care by the lead public health clinician (LPCH) and the patient navigator (PN), coupled with the patients' PCPs and Project SCOPE's lead endoscopist. The use of precolonoscopy telephone visits with the LPHC provided a unique method for removing many screening obstacles and addressing the need to conserve endoscopist manpower to free up time for screening colonoscopy.
Thorough preparation before the program was vital and began with: hiring patient navigators; education of health center staff regarding project protocols; form and database development; determining personnel contacts in all departments relevant to CRC screening, diagnosis, and treatment at Stony Brook University Medical Center; and pharmacy contractual agreements. Given the nature of this program as a demonstration, program enhancements were ongoing throughout the 40 months of screening.
MATERIALS AND METHODS
The first 8 months of the project were dedicated to: 1) design and development of protocols and forms, 2) formation of community and medical advisory boards, 3) identifying contacts in all clinical departments (ie, pathology, endoscopy, radiology) at Stony Brook University Medical Center that would be accessed for patient results, 4) the development of pharmacy agreements for reduced cost fulfillment of colonoscopy bowel preparation prescriptions, and 5) multiple visits to each of the health centers. The innovative approach to facilitate screening among patients enrolled in Project SCOPE used a combination of a bilingual PN overseen by a LPHC who, together with the gastroenterology staff and PCPs, implemented a colonoscopy referral system. The required qualifications of the PN included a bachelor's degree, fluency in English and Spanish, excellent communication and organizational skills, and facility with word processing programs. Preferred qualifications were a Bachelor's degree in a health-related field and prior experience working with disadvantaged populations. We were able to recruit PNs who met both the required and preferred qualifications. The LPHC, who was already named in the application for funding, was board certified in General Preventive Medicine and Public Health, based in the Department of Preventive Medicine, with significant interest and experience in cancer prevention, specifically CRC screening.
In developing the initial proposal to the CDC, we recognized the need to remove barriers to completion of screening by underprivileged populations. Solutions to obstacles, such as transportation, difficulty making more than one appointment, lack of knowledge about CRC and screening, are discussed in detail below (see Results). The project team decided that detailed referrals (Fig. 1), would be faxed from PCPs and would include some demographic information in addition to relevant past medical and surgical history and current medications. Patients who were referred to Project SCOPE followed an algorithm (Fig. 2). All uninsured or under-insured Suffolk County residents aged ≥50 years who were asymptomatic, at average risk, and due for CRC screening were eligible to participate in Project SCOPE. High-risk patients with a family history of adenomatous polyps and/or CRC were eligible as an exception. Project SCOPE protocols and algorithms were reviewed, revised, and approved by a medical advisory board comprised of physician representation from all disciplines involved in CRC screening, diagnosis, and treatment, including but not limited to gastroenterology, pathology, radiology, medical oncology, family medicine, and surgery.
Referred patients were initially contacted by the PN by telephone, as indicated in the patient pathway (Fig. 3). During that call, the SCOPE program, and specifically colonoscopy, were described in detail. Demographic information and screening history also were obtained during this first telephone contact. At the end of the preliminary call, a telephone appointment for a second Project SCOPE call with the LPHC was scheduled to reinforce the importance of CRC screening, answer questions about screening colonoscopy, discuss procedure risks and benefits, obtain a detailed medical/surgical history, and document prescription and over-the-counter medications and supplements. This second call averaged 15 minutes. Patients who only spoke Spanish were scheduled at a mutually convenient time for the patient, the LPHC and the PN, so that the latter could translate. For patients who did not speak English or Spanish, family members or the Stony Brook University Medical Center “Language Line” provided translational services. Telephone visits conducted in languages other than English averaged 30 to 60 minutes.
The LPHC determined program eligibility based on the patient history and the referral form with provided relevant medical history, medication, and pertinent physical examination findings. In a few cases, the lead endoscopist was consulted by the LPHC to determine whether the patient required an actual office visit with the gastroenterologist before the colonoscopy, possibly because of multiple chronic comorbid conditions or complicated past medical/surgical history. Patients who were eligible for screening were scheduled immediately during the call by the LPHC and instructed regarding precolonoscopy preparation (prep), including suspension of medications and/or supplementations, as well as bowel prep directions. The PN sent patients a confirmation letter by mail that included a “prep” prescription with a voucher to pay for the prescription and a written diet and prep instructions for the days before the colonoscopy. In addition, travel arrangements were made and paid for by the project for cases in which transportation was a screening barrier. Eight days before the procedure, the PN called the patient to confirm receipt of the precolonoscopy mailing and to verify that the patient had transportation and an escort to accompany him/her home, which was a postsedation requirement of Project SCOPE and Stony Brook University Medical Center. One day before the procedure, patients were contacted a final time to review prep instructions, to confirm arrival time and the place to meet the PN, and to answer any final questions. This final call from the PN provided emotional support to the patient and reduced patient anxiety the day before the procedure. However, it should be noted that patients were encouraged to contact the PN and/or the LPHC at any time during the precolonoscopy period with questions or concerns.
On the day of the procedure, the PN met the patient at a designated time and place and “navigated” the patient through outpatient registration and to the endoscopy suite.
It is noteworthy that some patients were referred but were not reachable at the telephone number provided by their PCP. Patients who were unreachable after 2 calls on different days at different times during the day were sent a letter asking them to contact SCOPE if they wished to pursue the CRC screening for which their PCP had referred them.
The 4-year demonstration yielded 40 months of screening. The initial 6 months of screening comprised the steepest aspect of the learning curve secondary to several challenges, including but not limited to colonoscopy scheduling, unreachable patients, and PCP screening notification, as discussed in detail below. However, improvements to the project were dynamic and continued through the last year of screening. Below are descriptions of some of the “lessons learned” throughout the demonstration.
Health Center Visits
Several lessons were learned from the health center visits. The initial appointment at 8 health centers involved a meeting between the LPHC and medical directors and administrators before screening to discuss the opportunities to improve CRC screening in their patient population. Many barriers to CRC screening with colonoscopy that existed, including cost, access, transportation, lack of knowledge, fear/anxiety, and language, were addressed in the CDC demonstration to be implemented. At a second preproject health center visit, the LPHC instructed PCPs on the SCOPE protocol and referral process, answered questions, and addressed concerns. Subsequent meetings took place during the demonstration program and allowed an exchange of suggestions and a forum for questions. In addition, at these later meetings, PCPs were provided with “report cards” for their health center compared with the other health centers regarding the overall percentage of referrals to date, the percentage of appropriate referrals, and the percentage of patients referred who completed screening. This feedback approach, which was used at the end of screening years 1 and 2, was very useful in increasing the overall number of referrals by some health centers that had referred comparatively few patients. In addition to formal meetings with the PCPs, the LPHC was in regular telephone contact with health center physicians to discuss individual patient cases. A principle lesson learned was the significant value of enlisting the continuous input of the PCPs before and during the project. The time invested by both the LPHC and the PCPs was relatively small compared with the benefit and the overall length of the project.
The Precolonoscopy Visit by Telephone
One patient barrier that was identified before beginning Project SCOPE was the need for a precolonoscopy visit to the gastroenterologist before scheduling the colonoscopy. This presented an obstacle to patients for several reasons, such as lost work days, family care responsibilities, and transportation issues. The solution of an LPHC precolonoscopy call was agreed upon by the SCOPE team and the lead endoscopist. The protocol included a faxed referral form from the PCP that documented a focused history and physical, which was no more than 3 months old at the time of screening, as well as equally recent blood urea nitrogen and creatinine levels to guide bowel prep selection. After reviewing the referral form, the LPHC conducted a scheduled telephone interview, at the patient's convenience, to perform a review of systems and discuss medical history. This call was a valuable teaching opportunity for the LPHC to review with the patient the risks and benefits of colonoscopy, explain the details of the bowel prep, and provide an opportunity for the patient to ask questions.
One of the early SCOPE challenges was scheduling for colonoscopy. It was difficult to reach gastroenterology scheduling staff at the very moment the LPHC was speaking to a patient and was ready to schedule that patient. Calling the patient back with a date and time created the obstacle of actually reaching the patient again and potentially calling them with a date/time that was inconvenient, thereby necessitating that the scheduling process begin all over again. The solution that worked best was obtaining the same set appointments on the endoscopy schedule each week that were reserved for SCOPE patients only. This allowed the LPHC to identify with the patient the most convenient day and time for the colonoscopy during the telephone interview. This solution was tremendously helpful in reducing the amount of staff time spent identifying convenient appointments and contacting patients. The SCOPE appointments remained available or “frozen” for SCOPE patients only until 2 weeks before the date. At that point, any frozen appointment slots that were not used by SCOPE became available on a first-come-first-served basis for use by SCOPE or the gastrointestinal clinic staff.
A significant challenge faced by Project SCOPE was patients who were unreachable after many attempts. Many staff hours were expended initially attempting to contact referred patients to the project, often to no avail. The alternative protocol developed was to call each patient 2 times, on different days and at different times of the day. If, after both calls, the patient was unreachable or failed to return a call after a message was left, then a letter was mailed informing the patient that SCOPE was following up on a referral by their PCP, who was named in the letter. The project was briefly described, and the patient was requested to contact SCOPE if (s)he was interested in learning more and/or scheduling a screening colonoscopy appointment. This method proved very beneficial, resulting in a 21% conversion rate of patients from “unreachable” to “screened.” In addition to the patient, the PCP received a copy of the letter, so that (s)he could address the referral at the next office visit.
Primary Care Provider Screening Notification
A challenge that was offered by PCPs during the preproject meetings at the health centers was that they did not receive reports from the endoscopists with regularity. Providers suggested that, once they sent referrals to gastroenterologists, they did not know whether or when their patients were scheduled or screened. To address this issue, a notification protocol was instituted as part of Project SCOPE. Every 2 weeks, faxed notifications were sent out to PCPs who had patients that were scheduled for upcoming colonoscopies along with the appointment date; and, if patients needed to reschedule, then their physicians were notified of the new appointment date. At the end of each of month, colonoscopy reports and, when appropriate, pathology reports were mailed to PCPs after being reviewed by the LPHC. This resolved the frequent issue of missing colonoscopy reports.
Lack of Escort Leading to Colonoscopy Cancellation
A small but consistent sample of referred patients needed to cancel colonoscopy appointments because of the last-minute unavailability of their required escort, often the day of the screening. This led to frustration on the part of the patient, who had already undergone the bowel prep on the previous day, and on the part of the gastroenterologists, who not only could have screened someone else but, now, had an unwanted gap in his or her procedure schedule. The solution instituted was to ask the patient to identify a back-up escort in addition to the primary escort and for the patient to confirm availability with both individuals. Thus, as part of the 8-day and 1-day calls before screening made by the PN, the availability of both escorts was confirmed with the patient. This method was successful in reducing the “no show because of no escort” rate to 1% of program-eligible, referred patients.
High Colonoscopy Completion Rate
Of the 1950 patients who were referred to SCOPE, 886 (54%) were determined to be program eligible. Of those patients, 90% proceeded to colonoscopy completion. The low rates of cancellation (5%), no show (3%), patients who were undecided about pursuing colonoscopy (1%), and no show because of no escort (1%) may be attributed to: 1) accessibility of both the LPHC and PN to the patient for all questions and concerns, 2) telephone education provided by both the LPHC and the PN, 3) precolonoscopy mailing, and 4) 8-day and 1-day reminder calls before screening. Details about the colonoscopy findings are described elsewhere in this supplement.
High Patient Satisfaction
Between 30 days and 60 days after colonoscopy, patients were contacted on the telephone by SCOPE staff to determine their satisfaction with the program. The overwhelming majority (>99%) were positive and included comments that were staff-specific, program-specific, or a combination of both, as indicated in Table 2. The few less positive comments focused on dislike of the bowel prep.
Table 2. Sample Patient Satisfaction Quotes
Abbreviations: SCOPE indicates Suffolk County Preventive Endoscopy.
“It's a fabulous program. I recently read something about (the program director) and other research. I felt great because I knew who she was and I could put a face to the name, she really impressed me!”
“The whole process was fantastic, the staff was very helpful. The doctor was exceptional and the nurses were very helpful.”
“Wonderful experience all the way through. I felt that I was treated very professionally. My daughter also felt that she was treated with respect, and thought very highly of the project.”
“Yes, please continue project for people who can't afford it. Everyone at Project SCOPE was phenomenal at explaining and answering questions.”
“The staff was fantastic; everybody was very nice and informative. It was wonderful how they treated me.”
“Very good. I felt that I had been treated better by Project SCOPE than most medical professionals. Was treated better than if I would have been treated in the private sector.”
“(PN) did a great job explaining to me the procedure and made me and my husband feel very comfortable. The service was really good, everyone did a great job! I was skeptical at first but now I can say that I would recommend it to everyone.”
“Project SCOPE staff were very helpful. I felt like they held my hand throughout the process from beginning until end.”
“It was very easy. They were very courteous. They couldn't make it any easier—they did very well, they were very pleasant and it was painless.”
“Happy for what Project SCOPE did for me.”
“I appreciated it. It was a life saver for me.”
“Preventive programs like yours save lives every day.”
“Was a really good experience. I did not know much about screening colonoscopy, but now I do. Keep up the good work.”
“More people should do it. I highly recommend the procedure.”
“Very pleased, and very beneficial, and things went well.”
Staff-related and program-related quotes
“Wonderful project. Very grateful for the project. Hope that the project continues. People should embrace it and have the procedure done. I learned that it was important to get a colonoscopy screening. I felt educated by the staff asking questions. I gained a lot from the project, and I believe that it will save lives. I also felt that I was treated with professionalism. My doctor friend was also very impressed by the care that I received by the Project SCOPE staff.”
“Keep up the good work! I was treated wonderfully, everything was set to ease. I was very nervous at first, but everyone was wonderful. I recommend it to everybody because it's really not a ‘nonpleasant experience'.”
Less positive comments
“Everything was good except the drinking part!”
“The worst part was your prep and quite frankly as I explain it to my friends… I'm sure you've felt worse after a night of ‘drinking.' Project SCOPE was great!”
“Everyone was great and informative; the worst part was taking the prep.”
Project SCOPE, a successful collaboration between an academic medical center and a county health center network, elucidated several potential means to increase CRC screening with colonoscopy among uninsured or under-insured patients. CRC screening typically is underused by this group. Notably, the Department of Preventive Medicine, integrated with the Division of Gastroenterology at Stony Brook, developed and implemented an innovative screening protocol that alleviated the need, in practically all cases, for a precolonoscopy visit to the gastroenterologist for average-risk, asymptomatic patients by providing clinical care coordination to evaluate the suitability of each patient for colonoscopy. Health center-referring PCPs and SCOPE's LPHC provided sufficient physical examination and medical history data to bridge the gap between preprocedure office consultation and provider direct endoscopy referral. This also eliminated the significant barrier of an extra office visit to screening among the indigent. The individualized patient-specific case management by the LPHC and the PN provided patients with information, such as education about CRC screening and risks/benefits, necessary to decide whether or not to pursue screening with colonoscopy as well as tools, such as mailed and telephone reminders, necessary to facilitate screening once the decision to screen had been made. In addition, the accessibility of the LPHC and the availability of the PN reduced patient anxiety and likely contributed to the low number of “no shows” and a high adherence rate. Direct-access colonoscopy,[3, 17] in which patients are referred directly by the PCP for colonoscopy, as described above, is an alternative to our methodology. However, that approach requires some oversight of the PN by a clinician, such as a gastroenterologist, or the selection of a more clinically trained individual, such as a GI nurse. The purpose of the latter is to ensure, for example, proper answers to clinical precolonoscopy questions, such as those involving the cessation of particular medications preprocedure or bowel prep inquiries.
The 4-year demonstration project provided many examples of successes and challenges of a CRC colonoscopy screening program among county health center patients. Given the project's length, we were able to identify and overcome several obstacles and to determine better practices. Difficulty with patient scheduling and inability to reach patients by telephone were two of the greatest challenges in the program, and both were overcome by program protocol changes. For example, scheduling was changed from an endoscopy department-dependent function to a SCOPE responsibility. Patients who were difficult to reach were addressed through a revised telephone procedure.
Academic medical centers have the benefit of housing many disciplines of medicine under one “roof” and experience in interspecialty collaborations. Ready access to patient information (ie, endoscopy reports, pathology reports, radiology results) is only a click away on any hospital computer for an individual in the position of LPHC or PN. All of these “givens” in an academic setting are not necessarily realities in other health care settings, which may limit the generalizability of the results. Nonetheless, a subset of the patient base of many academic health centers is often comprised of uninsured or under-insured patients. With funding through the Accountable Care Act, CDC funding through state programs, or expanded funding through other sources, academic medical centers can make use of Project SCOPE as a model for expanding their CRC screening activities and for establishing community linkages with the goal of improving CRC screening among disadvantaged populations.
The Colorectal Cancer Screening Demonstration Program evaluated in this supplement was funded by the Centers for Disease Control and Prevention (CDC) Funding Opportunity Number RFA AA030. The authors of this report were supported by CDC cooperative agreement U55/CCU22501701.