Digital Toolkit: A Guide to Cancer Screenings in Indian Country

This toolkit is the result of a partnership between the Centers for Disease Control and Prevention (CDC) and the National Indian Heath Board (NIHB) through funding titled, “Health systems improvements to cancer screening through Tribal health systems.” With its mission of advocating for the rights of all federally recognized AI/AN Tribes through the fulfillment of the trust responsibility to deliver health and public health services, NIHB is committed to improving health and promoting health equity within Tribal communities. This includes improving access to cancer screening in Indian Country by building the capacity of Tribal health systems. It is anticipated that supporting Tribal communities to build effective and efficient health system practices will result in improved screening for cancer, specifically breast, cervical, and colorectal cancers.

The CDC’s Division of Cancer Prevention and Control, Program Services Branch directly funds 13 Tribal awardees to implement health systems enhancements through cooperative agreements. This includes the National Breast and Cervical Cancer Early Detection Program (NBCCEDP) and the Colorectal Cancer Control Program (CRCCP). These initiatives aim to institutionalize priority evidencebased interventions (EBIs) found in the Guide to Community Preventive Services (The Community Guide). These EBIs are well-researched, proven strategies to increase quality cancer screening. Further information on The Community Guide can be found at https://www.thecommunityguide.org/topic/cancer.

 

Contents

This toolkit has been developed to share the best practices for programs as they implement the evidence-based interventions (EBIs) and strategies found in The Guide to Community Preventive Services (The Community Guide). This action guide is designed specifically for Tribal health systems interested in increasing high-quality, population-based breast, cervical, and colorectal cancer screenings. It has been piloted with nine Tribal sites to assess overall effectiveness in implementing cancer screening EBIs.

This toolkit is composed of six primary sections: Cancer 101, Overview of the National Breast and Cervical Cancer Early Detection Program (NBCCEDP) and the Colorectal Cancer Control Program (CRCCP), Overview of The Community Guide strategies, In-depth guide to implementing the EBIs in your Tribal health system, Additional lessons learned from the current NBCCEDP and CRCCP Tribal programs, and Summary — An action plan to implementing the EBIs.

Section 1: The Community Guide

This section provides an overview of The Community Guide for breast, cervical, and colorectal cancers based on existing research and evidence in 2017.

Section 2: Implementing Evidence-Based Interventions in Your Clinic

This section builds on the previous one by providing an in-depth guide to implementing evidence-based strategies in your Tribal setting. It includes key steps for using the strategies in addition to resources that might be needed to ensure successful implementation. Furthermore, this section highlights the successful implementation of these strategies using “Tribal Highlights” from the current NBCCEDP and CRCCP Tribal awardees.

Section 3: Additional Lessons Learned from Tribal Programs

This section provides additional lessons learned from the Tribal awardees.

Section 4: An Action Plan for Implementing the Strategies

This section provides an overview of how to develop your Tribal program or clinic’s action plan to implement evidence-based strategies for cancer screening.

Section 5: All Resources and Templates

This section provides download links to all resources and templates referenced in other sections of the toolkit.

Section 6: Additional Information

This section contains the following: an overview of the cancer burden in Indian Country; a primer on cancer screening tests and guidelines; an overview of the CDC’s National Breast and Cervical Cancer Early Detection Program and Colorectal Cancer Control Program; a link to the American Indian Cancer Foundation’s toolkit on colorectal cancer screening; and small media examples from NIHB-funded Tribal programs.

The Community Guide provides strategies to improve health outcomes by providing evidence-based interventions (EBIs) for breast, cervical, and colorectal cancer screenings. Issued by the Community Preventive Services Task Force (CPSTF), these interventions are recommended on the basis of systematic reviews of effectiveness and economic evidence of what works to increase cancer screening rates. The recommended EBIs for increasing cancer screening rates are directed at both clinical providers (i.e. those referring, ordering, or administering the screening test) and clients (i.e. patients in need of screening tests). Figure 2 provides an overview of the priority strategies (provider reminders, provider assessment and feedback, client reminders, and reducing structural barriers).

A brief description of each EBI is below, including the screening guidelines for each strategy (summarized in Table 4). Not all the screening guidelines are listed for each strategy. This means there is not enough evidence to determine whether the intervention strategy is effective. This does not mean the intervention strategy does not work; there is not enough research available or the results are too inconsistent to make a firm conclusion about the intervention strategy’s effectiveness. Programs can use interventions with insufficient evidence if they can rigorously evaluate them and publish the findings. To stay up to date on the current recommendations found in The Community Guide, visit https://www.thecommunityguide.org/.

Click to download a one-page “at a glance” guide containing all of the EBIs.

 

 

Brief Descriptions of the Evidence-Based Interventions (EBIs):

Provider Reminders

Provider reminders inform health care providers it is time for a client’s cancer screening test (called a “reminder”) or that the client is overdue for screening (called a “recall”). The reminders can be provided in different ways, either electronically using an electronic health record (EHR) system or manually in a patient’s chart.

Provider reminders are recommended for: breast cancer (mammography), cervical cancer (Pap test), and colorectal cancer (FOBT and flexible sigmoidoscopy only)

Provider assessment and feedback

Provider assessment and feedback interventions:

• Evaluate provider performance in delivering or offering screening to clients.
• Give providers information about their performance of screening services.

Provider assessment and feedback is recommended for: breast cancer (mammography), cervical cancer (Pap test), and colorectal cancer (FOBT only).

Client reminders

A client reminder can either be a written or telephone message advising an individual that they are due for a screening test.

Client reminders are recommended for: breast cancer (mammography), cervical cancer (Pap test), and colorectal cancer (FOBT only).

Reducing structural barriers

Structural barriers are burdens or obstacles that make it difficult for people to access cancer screening. This strategy implements interventions designed to reduce these barriers and facilitate access to cancer screening services.

Reducing structural barriers is recommended for: breast cancer (mammography) and colorectal cancer (FOBT only). Evidence is insufficient to determine the effectiveness of the intervention in increasing screening for cervical cancer (Pap test).

Supporting Strategy: Client Education

Client education delivers information with the goal of informing, encouraging, and motivating to seek recommended screening. Client education can be delivered through the use of small media including videos and printed materials such as letters, brochures, and newsletters. Client education can occur in a one-on-one or group setting.

One-on-one education is recommended for: breast cancer (mammography), cervical cancer (Pap test), and colorectal cancer (FOBT only).

Group education is recommended for: breast cancer (mammography). Evidence is insufficient to determine the effectiveness of the intervention in increasing screening for cervical cancer (Pap test) and colorectal cancer (FOBT, flexible sigmoidoscopy, and colonoscopy).

The use of small media is recommended for: breast cancer (mammography), cervical cancer (Pap test), and colorectal cancer (FOBT only).

Each section below provides an in-depth look at how to use the EBIs within your Tribal clinic or program. Each section includes the following:

• Key steps for implementing this evidence-based approach — This is step-by-step guidance for how to use each strategy to enhance your cancer screening program.
• Key staff for intervention implementation — This section provides staffing recommendations for a quality screening program.
• Resource needs — This section outlines resources needed to successfully implement EBIs within your Tribal clinic or program.
• Key considerations within a Tribal community — This section highlights key considerations for implementing EBIs in a Tribal setting.
• Highlights from funded Tribal programs — Using information gathered from the experience of NBCCEDP and CRCCP Tribal recipients site visits, this section highlights some of the successful EBIs implementations occurring across Indian Country.
• Resources/templates – Links to download relevant resources and templates to assist with implementation of the EBIs.

 

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Provider Reminders

Provider reminder and recall systems are evidence-based interventions to increase screening for breast cancer (mammography), cervical cancer (Pap test), and colorectal cancer (FOBT and flexible sigmoidoscopy). Reminders inform health care providers it is time for a client’s cancer screening test (called a “reminder”) or that the client is overdue for screening (called a “recall”). The goal of provider reminders is to increase delivery of appropriate cancer screening services by healthcare providers.

• Provider reminders generally work for a broad range of client populations, including clients who have never been screened or who have seldom been screened.
• This intervention is best for clients accessing health care, at least occasionally. It may not be the best approach to use in communities with limited access to health care or among groups who underuse healthcare services.

Key steps for implementing this evidence-based approach

• Decide which type of provider reminder will be used (e.g. electronic versus manual) and how this will be generated.
• Identify patients due for screening test.
• Alert providers of patients identified that need a screening test. This can be done by:
  • Manually flagging patient charts by:
    • Placing a sticker in the chart
    • Attaching to or placing a laminated reminder in chart or on the door
  • Ensuring electronic reminder in EHR system is programmed to alert provider during the visit of needed screening tests
  • Attaching a checklist to patient chart at time of appointment
  • Giving patient a wallet-size card with guidelines for screening tests; patient shows provider the card each visit as a reminder to order tests according to guidelines
• Include complete list of screening tests offered at your site and what tests need to be referred elsewhere
• Include condensed screening recommendations
• Monitor provider performance on their response to provider reminders
  • After each visit, determine whether a screening test was completed or a provider referral made. Why or why not?
    • Reassess workflows
    • Adjust for what works in each clinic/health system

Key staff for intervention implementation

• Staff to identify patients eligible for screening
  • Data manager, nurse case manager, outreach specialist
• Administrative support
  • Front desk receptionist, file clerk
• Staff to develop provider reminder system (manual or electronic)
  • Data manager, nurse case manager
• Providers who see patients
  • Physician’s assistant, nurse practitioner, general practice physician

Resource needs

• Registry or database of eligible patients
• Laptops or tablets for provider use during patient appointments, if using electronic reminders
• Partnerships
  • Internal – across and within clinics, such as billing or claims areas, radiology, information technology departments
  • External – to access registries or other external databases of patients; laboratories
• Educational materials related to screenings ready to provide to patients
• Physical chart indicators of need for screening
  • Stickers
  • Laminated bookmarks
  • Checklists
• Ways to capture number of tests ordered and performed by provider
  • Tracked within EHR
  • Tracked using triplicate forms
• Training for staff on use of reminders

Key considerations within a Tribal community

• Administrative burden and lack of information technology infrastructure are potential barriers to provider reminder use.
  • If EHR systems are unavailable or unreliable, manual provider reminders are a suitable and evidence-based method for alerting providers to screening tests that may be due for patients.
• In addition to tracking ordered and completed tests, Tribal clinics may find it useful to track missed appointments.
• Staffing requirements may be a barrier to provider reminders.
  • If provider or staff turnover is an issue, training on use of provider reminders should be included in mandatory orientation for new providers and staff.
• Cross train staff to perform multiple functions.

Highlights from funded Tribal programs

• The Native American Rehabilitation Association (NARA) Breast and Cervical Cancer Program (BCCP) uses manual reminders to notify providers of patients who are due for cancer screenings. This involves staff conducting daily chart audits of scheduled patient appointments and subsequently placing laminated pink bookmarks in patients’ chart for women due for a mammogram or women’s exam (PAP). The provider then knows to place an order or referral for cervical or breast cancer screening, which is tracked using triplicate forms.
• An important part of implementing Provider Reminders is tracking the number of orders and referrals for cancer screening tests. The Hopi Tribe Breast and Cervical Early Detection Program (BCCEDP) does this by generating reports on a monthly basis to audit the number of orders/referrals scheduled for screening tests and how many screening tests were actually completed.
• At Arctic Slope NBCCEDP, the traveling nurse practitioner is responsible for performing all Pap tests performed in the surrounding villages outside Barrow, AK. Since internet connectivity is not always reliable in the remote areas of the Arctic Slope region, a Microsoft Excel spreadsheet allows for tracking women due and completed Pap tests in the surrounding villages.

Resources/Templates

• CDC Screen Out Cancer Page EBI Guide: Provider Reminders
• Provider Reminder Examples: Hopi Tribe Breast and Cervical Early Detection Program — Tracking Documents
• Provider Reminders Policy Template

 

 

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Provider Assessment and Feedback

Provider assessment and feedback interventions are evidence-based strategies to increase screening for breast cancer (mammography), cervical cancer (Pap test), and colorectal cancer (FOBT only). Provider assessment and feedback interventions do both of the following:

Assessment — This strategy involves evaluating provider performance in delivering or offering screening to clients.

Feedback — This strategy involves presenting providers with information about their performance in providing screening services. Feedback may be done on a group basis (e.g. average performance for a group of providers) or on an individual basis with a single provider. Both group and individual performance may be compared with a goal or standard.

Key steps for implementing this evidence-based approach

• Identify patients who are due or overdue for a screening test
• Hold an orientation or introductory training session for providers involved in recommending or delivering screening tests
• Track provider performance for all providers involved in offering or delivering mammograms, Pap tests, and FOBT
  • This includes cross-referencing patients coming in who are due for these screenings and whether or not they were offered or received the screenings
  • Develop reports for individual providers used in individual feedback sessions
• Develop comparison sheet of individual with groups (anonymous)
• Develop aggregate group reports of important screening tests, past performance, and targeted performance
• Deliver feedback
  • Describe the performance of an individual provider or a group of providers (e.g. average performance for a practice)
  • Compare the performance of individual providers within or between practices. Only the individual provider sees their own performance
  • In person, in print, or both generated by computer or manually
  • To individuals, group, or both
  • For 30-120 minutes depending on context for delivery; including lunch or snacks is recommended for group sessions
  • Once or on a regular basis over period of evaluation
• Provide technical assistance
  • Periodic discussions of individual results and print comparison of individual with group
  • Training

Key staff for intervention implementation

• Staff to identify patients eligible for screening
  • Data manager, nurse case manager, outreach specialist
• Administrative staff who audit physician actions and prepare summaries
  • Front desk receptionist, file clerk, IT staff, billing or records department
• Providers who see patients
  • Physician’s assistant, nurse practitioner, general practice physician
• Staff to deliver orientation for providers on assessment and feedback system
  • Clinic director, office manager
• Staff to deliver feedback
  • Medical director, clinic director

Resource needs

• Electronic health records
• A job aid with practice guidelines, choices for action
• Chart prompts and stickers (See Provider Reminders)

Key considerations within a Tribal community

• If EHR systems are unavailable or unreliable, manual systems for tracking may be developed using triplicate forms and/or Microsoft Excel spreadsheets.
• Competition and publishing competitor screening rates may not be considered culturally appropriate in all Tribal clinics. In this case, provider performance may be assessed overall and delivered as a group to providers.

Highlights from funded Tribal programs

• To assist in provider feedback, the Hopi BCCEDP conduct staff debriefings after every mobile mammography and specialty Pap tests clinic.
• The South Puget Intertribal Planning Agency (SPIPA) Native Women’s Wellness Program holds quarterly provider roundtable meetings within each of their five IHS-direct service clinics. These roundtable meetings involve the clinic director, providers, and SPIPA staff, allowing for an opportunity to give providers feedback in addition to assessing their satisfaction with offering and delivering cancer screening services.
• At Kaw Nation’s Women’s Health Program, patients are given patient satisfaction surveys after every breast and cervical screening test. In addition to providing valuable feedback on providers’ services, the survey also asks what prompted the patient to schedule an appointment (for example through a client reminder or from client education outreach, or because a provider recommended it).

Resources/Templates

• CDC Screen Out Cancer Page EBI Guide: Provider Assessment
• Provider Assessment & Feedback: South Puget Intertribal Planning Agency (SPIPA) Native Women’s Wellness Program Patient Survey  and Hopi Patient Survey

 

 

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Client Reminders

Sending client reminders to patients is an evidence-based strategy to increase screening rates for breast cancer (mammography), cervical cancer (Pap test), and colorectal cancer (FOBT only). A client reminder can either be a written or telephone message advising an individual that they are due for a screening test. Client reminders may include:

• Written messages such as letter, postcard, or email
• Telephone messages left by a person or automated service

Initial client reminders may be enhanced by a follow-up reminder in print or by telephone, which may have one or more of the following:

• No additional information
• Additional information about indications for, benefits of, and ways to overcome barriers to screening
• Assistance in scheduling appointments

In addition, the initial or follow-up reminder can be untailored or tailored.

• Untailored reminders are developed for the overall target population
• Tailored reminders are related to the outcome of interest but developed for one specific person, based on characteristics unique to that person derived from an individual assessment

Key steps for implementing this evidence-based approach

• Identify patients who are due or overdue for a screening test
• Decide which type of client reminders will be used (written, telephone, or both)
• Remind patient they are in need of a screening test
  • Invite client to be screened through postcard or letter
    • (COLORECTAL ONLY) Possibly include an FOBT/FIT kit with instructions
  • Invite client to be screened by using an automated call system or calling in-person
• (OPTIONAL) Remind patient again after a specific time period, for example at 3 days, 7-10 days, 2 weeks, 1 month, 90 days, one year, or a combination thereof after the first reminder.
• (OPTIONAL) For print follow-up reminders, include:
  • A brochure, leaflet, pamphlet, booklet, or screening guideline fact sheet, even sticker reminders for client to use
  • A phone number for person who can schedule appointment
  • (COLORECTAL ONLY) Another FOBT/FIT kit
• (OPTIONAL) For telephone reminders, include:
  • Invitation to schedule a personal counseling session on barriers to making an appointment
  • Personal counseling session on barriers to making an appointment; if first notice was done by letter, the counseling session matched the text of the letter
  • Survey to determine stage of decision-making to have a test
  • A phone number to schedule Pap and mammogram without physician referral. An offer to make appointment for client
• Offer client reminders in combination with other intervention approaches, such as:
  • Reducing structural barriers by sending FOBT/ FIT kits, scheduling appointments, or offering mobile mammography unit
  • One-on-one education in person counseling on barriers
  • Provider reminders, such as a letter in chart, until test is ordered by provider

Who does this intervention work best for?

• For women who have not been screened previously, motivational interviewing may be useful in identifying barriers and facilitators to obtaining screening. These results can be used to plan follow-up reminders.

Key staff for intervention implementation

• Staff to run reports generating the reminder list
  • Data manager, nurse case manager, public health nurse, lab director
• Staff to draft and mail out letters
  • Clinic scheduling department, outreach specialist, case manager
• Staff to draft telephone scripts and conduct phone reminders
  • Outreach specialist, case manager
• Administrative staff to assist in scheduling patient appointments
  • Front desk receptionist, file clerk

Resource needs

• Partnerships
  • Internal — Across and within clinics, such as billing or claims departments, radiology department, and Information Technology departments
  • External — to access registries or other external database for eligible women; laboratories; community health representatives (CHRs)/ community health aide practitioners (CHAPs), volunteers, academic partners
• Letters and/or postcards (written reminders)
• Postage to mail written reminders
• Brochures, leaflets, pamphlets, booklets, or screening guideline fact sheets to mail with written reminders

Key considerations within a Tribal community

• Basic infrastructure, staffing, and computer support is needed to identify patients due for screening and deliver reminders efficiently. Access to computerized tracking and databases may be needed.
• For smaller Tribal communities, ‘house visit’ reminders may be a useful way to update patient phone numbers and addresses.
• Telephone reminders may be useful leading up to a mobile mammography clinic, for new patients, the day before a patient’s scheduled appointment, or if there is limited funding for postage.
• Client reminder letters may be tailored to the Tribal community. Variations include:
  • Providing contact information for patient to call and schedule the screening appointment
  • Setting a pre-scheduled screening appointment for patient
  • Including a “when is the best time to call” option for patients to fill out and mail in, allowing case managers to follow up in scheduling screening appointments
  • Having the reminder letter signed by the provider (or Medical Director) to help encourage patients to set up an appointment
• To measure the effectiveness of reminder letters, Tribal clinics may choose to provide a form for patients at the screening appointment asking “how did you hear about us?” to assess why the patient came in.
• For some Tribal communities, patient phone numbers may not be up to date due to the use of ‘pay as you go’ phones.
• Clinics may serve populations comprised of people who speak different languages. Written and telephone reminders as well as any accompanying materials must take that into consideration.

Highlights from funded Tribal programs

• One month prior to their mobile mammography clinics, The Navajo Nation Breast and Cervical Cancer Program (BCCP) sends out client reminder letters notifying women they are due for a mammogram and that they have an opportunity to schedule an appointment for the upcoming clinic. Follow up letters are then sent two weeks later. Courtesy reminder calls are also conducted the week before the mobile mammography clinic and are offered in the Native Diné language, if needed.
• While some programs track responses to client reminders, the Cherokee Nation Breast and Cervical Early Detection Program finds it equally important to track no show rates for breast and cervical cancer screening appointments. Missed appointments present a challenge for many of the programs. In addition to sending a reminder letter for scheduled screening test appointments, the Cheyenne River Sioux Tribe (CRST) Women’s Health Program calls patients the day before and morning of screening appointments. Other programs with high ‘no show’ rates have found it beneficial to offer ‘opportunistic’ or same day screening tests for patients visiting the clinic for unrelated appointments.
• The Southcentral Foundation (SCF) Breast and Cervical Health Program has found that patients respond more positively (and schedule screening appointments) to client reminder letters when they are signed by a provider

Resources/Templates

• CDC Screen Out Cancer Page EBI Guide: Client Reminders
• Client Reminder Materials (letter and postcards) from Southcentral Foundation (SCF) Breast and Cervical Health Program, Great Plains Tribal Chairmen’s Health Board (GPTCHB), Kaw Nation Women’s Health Program
• Client Reminders Policy Template
• Client Reminder Email Templates

 

 

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Reducing Structural Barriers

Reducing structural barriers is an evidence-based strategy to increase screening for breast cancer (mammography) and colorectal cancer (FOBT only). Evidence is insufficient to determine the effectiveness of the intervention in increasing screening for cervical cancer (Pap test). Structural barriers are non-economic burdens or obstacles that make it difficult for people to access cancer screening. Interventions designed to reduce these barriers may facilitate access to cancer screening services by:

• Reducing time or distance between service delivery settings and target populations
• Modifying hours of service to meet client needs
• Offering services in alternative or non-clinical settings (e.g. mobile mammography vans at worksites or in residential communities)
• Eliminating or simplifying administrative procedures and other obstacles (e.g. scheduling assistance, patient navigators, transportation, dependent care, translation services, limiting the number of clinic visits)

Key steps for implementing this evidence-based approach

• Structural barriers are unique to each Tribal clinic population. Decide which ones are necessary to improve patient access to cancer screening tests. Patient surveys can be administered to determine structural barriers to accessing screening tests.
  • Clinic hours — Extending appointment hours for screening tests. This can either be accomplished by offering evening appointments or holding a clinic on a Saturday. Extended hours may be weekly, monthly, or quarterly depending upon need.
  • Transportation — Providing transportation via van or taxi for individuals needing screening.
  • Availability of screening tests in non-clinical settings — Providing an alternate place for screening such as a mobile mammography unit. This may be especially helpful in Tribal clinics with no mammography machine onsite.
  • Patient assistance — Revising a clinical protocol and computer system to require fewer steps from initial appointment to screening appointment. This can be accomplished by providing patient navigators who:
    • Assist appointment making by phone, letter, or in-person.
    • Inform and educate about what would happen during the test, where it would be held, and what the individual needed to do to prepare for having the test.
  • (COLORECTAL ONLY) Mailing FOBT kit and return envelope with postage paid to those who needed the test.
  • Dependent care — Providing staff onsite to care for young children during screening tests.
• Establish a protocol for offering each type of assistance
• Educate staff (e.g. administrative, providers, nurses, navigators)
• Inform those who are due for screening of the services available
  • Include this information in client reminders

Key staff for intervention implementation

• Staff to identify eligible individuals for screening
  • Data manager, nurse case manager, public health nurse, lab director
• Clinical staff to provide screening tests during extended hours (e.g. evenings or Saturdays)
  • Nurse practitioner, physician assistant, family physician
• Staff to assist patients in scheduling appointments, providing patient education
  • Health educators, outreach specialists, case managers, patient navigators
• Staff to provide transportation, childcare, or other assistance for patients
  • Patient navigators, CHRs/CHAPs

Resource needs

• Partnerships
  • Internal — Across and within clinics, with providers (primary care and specialists) to hold extended hour appointments; with IT departments, billing departments, medical directors, office managers, and front desk staff to reduce scheduling burden
  • External — With mobile mammography contractor; transportation services within community, e.g. senior vans and Tribal drivers; CHRs/CHAPs, patient navigators (if not employed by Tribal clinic); community-based organizations to get the word out
• Paper and postage for letters inviting individual to screening appointment; letter may refer to patient navigator or other person that can help schedule appointment, or contain a prescheduled appointment
• Available, accessible, and audience-relevant educational materials about the test and its role in early detection of cancer.
• Mobile mammography units or transportation to screening site.

Key considerations within a Tribal community

• Holding extended hour appointments (evenings and Saturdays) may be difficult for IHS-direct clinics due to provider payment systems.
• Patient navigators can help address individual patient apprehension towards screening tests through one-on-one education.
• Materials and other communications may be needed in multiple languages.

Highlights from funded Tribal programs

• Mobile mammography clinics have been a crucial component of both the Southeast Alaska Regional Health Consortium (SEARHC) and Yukon Kuskokwim Health Corporation (YKHC) breast and cervical cancer programs due to their extremely remote and rural communities in Alaska. Since the Tribal villages are not accessible by road, the mobile mammography units have to travel by alternative means. In the case of SEARHC, the mobile mammography unit travels using the ferry system in southeastern Alaska and requires extensive planning ahead of time to sign women up for appointments and to coordinate with the ferry schedule. In the case of YKHC, Tribal villages are not accessible by road or ferry, so the mobile mammography unit must be air freighted in. This also requires extensive pre-planning and outreach to ensure as many women as possible take advantage of the mobile mammography visit.
• The NARA BCCP offers quarterly Saturday breast and cervical cancer screening clinics with the hours of 7:30am to 5:00pm. This is done in coordination with other chronic disease programs, such as the NARA Diabetes Treatment & Prevention Program. Patients gather in the lobby of the health clinic for health education, talking, sharing and a craft activity. They complete a pap smear, complete breast exam and a mammogram. NARA also offers evening screening appointments (until 7:30 pm) three times a week, taking the additional step of making sure a female provider is available to conduct the screenings.
• Offering evening screening appointments does not have to be done on a weekly basis. Instead, the women’s wellness clinic at Cheyenne River Sioux Tribe (CRST) is open until 8:00 pm every 3rd Wednesday.

Resources/Templates

• CDC Screen Out Cancer Page EBI Guide: Reducing Structural Barriers
• SEARHC’s Mobile Mammography Flyer

 

 

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Client Education Using Small Media (supporting strategy only)

One-on-one education is an evidence-based strategy to increase screening for breast cancer (mammography), cervical cancer (Pap test), and colorectal cancer (FOBT only). One-on-one education delivers information to individuals about indications for, benefits of, and ways to overcome barriers to cancer screening with the goal of informing, encouraging, and motivating them to seek recommended screening. Group education is an evidence-based strategy to increase screening for breast cancer (mammography) only.

Group education conveys information consistent with that shared during one-on-one education but is usually conducted by health professionals or by trained lay people who use presentations or other teaching aids in a lecture or interactive format. This type of education often incorporates role modeling or other methods. Group education can be given to a variety of groups, in different settings, and by different types of educators with different backgrounds and styles including healthcare workers or other health professionals, lay health advisors, or volunteers. The education sessions can be conducted by telephone or in person in medical, community, worksite, or household settings.

The use of small media is an evidence-based strategy to increase screening rates for breast cancer (mammography), cervical cancer (Pap test), and colorectal cancer (FOBT only). Small media include videos and printed materials such as letters, brochures, and newsletters. These materials can be used to inform and motivate people to be screened for cancer. They can provide information tailored to specific individuals or targeted to general audiences.

Key steps for implementing this evidence-based approach

• Determine what materials are already available that can be modified to meet the needs of your patients and program.
• Create additional culturally-tailored materials as needed for your patient population.
  • Appendices 5 and 6 contain examples of printed materials and blank templates that are available for use.
• Make sure materials are free, available in print, accessible at an appropriate reading level and are translated into any Native languages written in the community (if necessary). Guidance on creating easy-to-understand materials can be found at https://www.cdc.gov/healthliteracy/pdf/Simply_Put.pdf.
• Decide where to disseminate printed material. Suggested methods include:
  • Clinic waiting rooms
  • Mailing with client reminders for screening tests
  • Have key staff hand out to patients when conducting one-on-one and group education on screening tests
    • One-on-one education may occur during patient appointments, patient navigator appointments, or when scheduling screening test appointments.
    • Group education settings may include during mobile clinics or community events such as pow-wows or health fairs (see Section 5.1 for more information on health fairs)
• Review printed materials on a regular basis (e.g. every six months or annually). This helps to ensure materials remain appropriate for patient population and that cancer screening guidelines are up to date.

Key staff for intervention implementation

• Staff to draft, create, and review appropriateness of printed material
  • Health educators, outreach specialists, marketing staff, case managers
• Staff to disseminate printed material
  • Health educators, outreach specialists, case managers, clinical providers, patient navigators, administrative staff mailing client reminders
• Staff to deliver one-on-one and group education
  • Providers, patient navigators, CHRs/CHAPs, health educators, and outreach specialists

Resource needs

• Partnerships
  • Internal — Across and within clinics to display materials within clinic waiting rooms and to ensure provider dissemination during patient appointments, with marketing/PR department to develop materials, if needed.
  • External — With CHRs/CHAPs to help in disseminating material, other Tribal organizations to share culturally relevant printed materials. This intervention requires creating or obtaining brochures, leaflets, pamphlets, booklets, or screening guideline fact sheets.
• Printing costs will be directly associated with dissemination of the material.
• Postage may be required if mailing materials directly to patients.

Key considerations within a Tribal community

• It is important to provide printed material that is culturally appropriate to the Tribal community. This includes ensuring all printed materials are translated into any written languages used within the community.
• Internal marketing departments within the Tribal clinic and/or Tribal health department can help in creating culturally relevant and tailored materials for your community. For clinics with no internal marketing department, please see Appendix 5 for examples of culturally appropriate materials that can be tailored to your population.

Highlights from funded Tribal programs

• The SCF Breast and Cervical Health Program relies on the help of the Alaska Native Tribal Health Consortium (ANTHC) Marketing and Communications Department to create culturally relevant materials for their AN population.
• During each Well Women’s clinic, the Hopi Tribe BCCEDP provides each patient a document that they can read and learn about breast and cervical health. This is followed up with a short five-question quiz to assess how much they have learned from the document. In addition, the Health Educator attends both the Well Women’s and mobile mammography clinics to gives educational presentations on breast and cervical health to women in the waiting room. Hopi program staff also utilize these clinics to target another strategy, Provider Feedback and Assessment, by administering a patient satisfaction survey. This provides information on how to improve services in addition to giving feedback to providers about their service.

Resources/Templates

• Small Media Examples: infographics on breast and cervical cancer; brochures from the South Puget Intertribal Planning Agency (SPIPA); a mobile mammography flyer from SEARHC; and a flyer for a social support group from the Southcentral Foundation. 

 

This section highlights NBCCEDP Tribal Awardees that share their best practices for the holistic integration of other prevention programs that benefit their patients. A case study for one CRCCP tribal program is also included.

 

Program Integration

The Southeast Alaska Regional Health Consortium (SEARHC) BCCEDP has made linkages with two additional programs at SEARHC, the CDC-funded WISEWOMAN (Well-Integrated Screening and Evaluation for WOMen Across the Nation) program and IHS-funded Special Diabetes Program for Indians (SDPI). The WISEWOMAN program works with low-income, uninsured and underinsured women, a population shared with the BCCEDP. SEARHC has made an effort to take a holistic approach wherein recipients of the programs experience them as integrated, preventive programs. For example, this may mean that BCCEDP pays to fly women into clinics for cancer screening, but then utilizes SDPI funding for diabetes and pre-diabetes services. They also promote integration during mobile mammography clinics with WISEWOMAN/Women’s Health staff by holding WISEWOMAN events during evening hours (community fitness walks, community education talk on stress control, etc.) as well as enrolling/coaching/following up with WISEWOMAN participants when they present for mobile mammography. Furthermore, there is cross-referral between programs and patient navigators are also paid 50/50 by WISEWOMAN and NBCCEDP.

 

Dealing with Provider Turnover

High provider turnover is an issue facing many Tribal clinics and can pose a barrier to successful cancer screening program implementation. To help alleviate the effects of provider turnover, Kaw Nation BCCEDP has a pink, laminated card placed at clinics’ reception so that staff, regardless of how new they may be, are aware of the key Breast and Cervical Cancer Screening Program requirements. This helps to inform staff who may have not yet had a formal introduction to the program.

 

Dealing with Missed Screening Appointments

Another common issue facing many Tribal clinics is the incidence of missed screening appointments or high “no-show” rates. Missed screening appointments can be a financial burden to the clinic and potentially affect patient care as staff time is not used efficiently. They also have a damaging effect on efforts to improve cancer screening rates. To ameliorate the effects missed screening appointments may have on screening rates, CRST BCCEDP practices opportunistic screenings. This means that if a patient is in the clinic for a particular reason, program staff assess to see if the patient is due and, while they are there, the patient is offered additional screening tests that are due. Opportunistic screenings can bypass scheduling appointments, minimizing the risk for missed appointments.

 

Health Fairs

Health fairs are community events where organizations come together to disseminate health information with the public and/or to provide health screenings. These community events often offer education on various health topics and are hosted by both health professionals and lay people. While they are a popular method for conducting community-based health promotion activities and offering health education, the evidence base behind them is limited. However, health fairs can be an evidence-based activity when screening tests are performed onsite or onsite scheduling of screening test appointments occur. Encounters which result in screening should be documented.

For Tribal communities, health fairs can be a critical community engagement opportunity to implement EBIs such as one-on-one education or touchpoints to coordinate group education. This includes building capacity for communities to provide education engagement with hard to reach populations. In addition to providing women with educational materials, health fairs can be an opportunity to publicize available services through culturally relevant methods. For example, Southcentral Foundation NBCCED frequently holds ‘beading circles’ at various health fairs. These beading circles are an opportunity for women to work on a beading project while also learning information about breast cancer and mammograms, typically from a breast cancer survivor. The goal is to create a welcoming environment so that women want to learn more about mammograms and have a safe place for asking questions.

 

Colorectal Cancer Case Study

Case Study: Great Plains Tribal Chairman’s Health Board and Patient Education

The Great Plains Tribal Chairman’s Health Board (GPTCHB) serves 20 facilities and 17 Tribes in South Dakota, North Dakota, Nebraska, and Iowa. Their cancer screening work focused on colorectal cancer, however they were notified during summer 2017 that they were awarded NBCCEDP funding to expand breast and cervical cancer screening initiatives.

Patient education is an excellent example of the Community Guide work occurring at GPTCHB. Most patient education occurs on a one-on-one basis at GPTCHB and is typically presented by CHRs, patient navigators, subawardees including public health nursing providers, and even community champions (patients). However, they are exploring expanding their group education by using health educators and webinars and have already partnered with state health departments and with the American Cancer Society.

Health fairs are used as opportunities to provide onsite screenings and schedule screening appointments. For onsite screenings, GPTCHB uses “poop on demand” testing to obtain and analyze stool samples. Their FluFIT program also provides Fecal Immunochemical Test (FIT) lab work to eligible patients who are receiving influenza vaccines. These tests can be used at home and mailed back for testing. The Rollin Colon, pictured below, is an inflatable, walk-through colon also used at health fairs to educate patients in a hands-on way, attract interest and curiosity, and reduce squeamishness about the topic.

GPTCHB provides pre- and post-tests for patients participating in Rollin Colon activities to evaluate the effectiveness of this form of patient education.

To teach patients about colon cancer and the importance of cancer screening, GPTCHB also distributes small media including fact sheets, posters, brochures, infographics, and social media posts. Some materials are mailed to facilities for distribution, and radio ads and videos on Good Health TV are played on televisions in waiting rooms at IHS facilities. To ensure that materials are up to date, GPTCHB reviews the materials annually and revises as needed. They also work with their communications department to ensure that materials are culturally and linguistically appropriate.

 

 

Although breast, cervical, and colorectal cancers pose a threat to many Tribal communities, the burden of cancer mortality can be lessened through routine, high quality screening. The EBIs found in the Community Guide are recommended on the basis of systematic reviews of effectiveness and economic evidence to reveal what works to increase cancer screening rates. This toolkit provides an in-depth guide to develop an action plan and assist your program or clinic in implementing the EBIs. Use the steps below to help your program or clinic develop its action plan to implement the EBIs.

 

• Identify a goal. Work with the key decision makers within your program or clinic to set a goal. For example, the goal may be to increase the clinic’s screening rates by a certain percentage. Or it could be to fully implement a reminder system for all health care providers.

 

• Choose one to two EBIs to implement. This should be a collaborative decision amongst program/clinic staff involved in cancer screening.

 

• For implementation, identify existing methods, policies, protocols, processes, and programs to build on. This is a key element for success, as building on existing efforts requires fewer resources and you are more likely to succeed than if you try to create something from scratch. For example, if a patient reminder system is in place for other cancer screening tests (e.g. for colonoscopy), can a mammogram reminder be added?

 

• Determine a plan for tracking progress. This includes deciding what data will be collected, how these data will be collected, how often, what reporting methods you will use, and who will receive the resulting information.

 

• Implement the action plan. Use this Plan Template to identify the specific tasks needed, resource needs, and allocation of responsibilities to implement the strategy chosen. This includes implementing a policy/protocol for the chosen strategy, if one does not exist. Appendix 6 contains policy templates that can be adapted as needed. In addition, create a timeline to determine when tasks should be completed by. A key part of the action plan’s success is to communicate often with your key stakeholders and program staff. Communicate individual responsibilities in addition to the project timeline.

 

• Use this Assess Your Progress Worksheet to track your activities. All projects should have assessment components built in to assess progress and make changes if needed.

 

For more information and the latest updates on the CDC’s federal programs for cancer prevention and control, visit https:/www.cdc.gov/cancer/dcpc/about/index.htm.

This section contains download links to resources and templates found within the toolkit.

This section contains the following: an overview of the cancer burden in Indian Country; a primer on cancer screening tests and guidelines; an overview of the CDC’s National Breast and Cervical Cancer Early Detection Program and Colorectal Cancer Control Program; a link to the American Indian Cancer Foundation’s toolkit on colorectal cancer screening; and small media examples from NIHB-funded Tribal programs.

Cancer 101

Below is an overview of breast, cervical, and colorectal cancers by describing the cancer burden in Indian Country along with screening tests and recommended guidelines for routine testing issued by the United States Preventive Services Task Force (USPSTF).

Cancer in Indian Country

Breast cancer is the most frequently diagnosed cancer and the leading cause of death among American Indian/ Alaska Native (AI/AN) women (CDC 2017). Although AI/AN women have a lower breast cancer incidence rate compared to White women, AI/AN women are more likely to be diagnosed at a younger age and after their cancer has progressed to more advanced stages. Rates of breast cancer are not uniform across Indian Country, but vary by region. For example, mortality rates among AI/AN women in the Pacific Coast, Southwest and Eastern regions seem to be lower than rates for White women. However, a closer look at mortality rates stratified by age groups reveals that AI/AN women aged 40-49 years in the Alaska region and women aged 65 years or older in the Southern Plains experienced higher breast cancer mortality rates than White women in the same age group (White, A., Richardson, L. C., Li, C., Ekwueme, D. U., & Kaur, J. S. 2014). Many of these deaths could be prevented with routine cancer screening, particularly since overall breast cancer screening rates among AI/ AN women are lower (71.6%) than the screening rates for White women (76.7%) (Ibid). Similar to rates for breast cancer screening also varies by region. According to data estimates from the 2000 to 2010 Behavioral Risk Factor Surveillance System, the Southwest region had the lowest screening rates (61.1%) while the Southern Plains region had the highest screening rates (73.6%), which is still lower than the national average screening rate for White women (CDC 2012).

Cervical cancer, once known as the most common causes of cancer deaths for American women, has decreased by 50% in the past 40 years due to the increased use of the Pap test for cancer screening (American Cancer Society 2016). Although rates for cervical cancer have decreased dramatically nationally, health disparities are affecting AI/AN women in significant ways. The cervical cancer mortality rate for AI/AN women in Indian Health Service (IHS) Contract Health Service Delivery Area (CHSDA) counties is almost twice the rate in White women (4.2 per 100,000, compared to 2.0 per 100,000) (Watson, M., Benard, V., Thomas, C., Brayboy, A., Paisano, R., & Becker, T. 2014). Despite existing screening efforts, AI/AN women experienced a higher incidence rate and diagnosis at more advanced stages of cervical cancer (Ibid).

Colorectal cancer is another treatable cancer with preventive screening tests and ranks in the top five most common cancers diagnosed in the United States. Overall, colorectal cancer mortality rates have declined due to the use of screening measures such as colonoscopies, fecal immunochemical tests (FIT), and fecal occult blood testing (FOBT). Unfortunately, AI/AN people still face colorectal cancer disparities in many regions throughout the United States. For example, colorectal cancer incidence and mortality among AI/ANs have been found to be 21% and 39%, respectively, higher than White populations. Once again, these rates vary by region, with the highest incidence rates and mortality rates among AI/AN populations in Alaska and the Northern and Southern Plains regions. Additionally, indigenous people are diagnosed with colorectal cancer at younger ages and at more advanced stages of cancer, leading to a greater burden of disease. These disparities are evident in the Eastern region as well, where AI/AN women had significantly higher colorectal mortality rates than White women.

By increasing cancer screening rates per national guidelines, many cancer deaths could be avoided. Routine patient cancer screening, such as mammograms, Pap tests, and colonoscopies, are particularly effective as they can frequently prevent or detect these cancers before a person develops any symptoms.13 Identifying abnormal tissues before disease develops or discovering cancer during early stages may make it easier for the cancer to be prevented, treated, or cured, reducing morbidity and mortality and the overall burden of disease. Cancer screening is low-risk and typically causes patients only minor discomfort or inconvenience while providing valuable results.

As we work to increase cancer screening, it’s important to identify barriers such as lack of reliable access to healthcare, cultural differences, and other social determinants of health.

Cancer Screening Tests and Guidelines

Cancer screening, which is checking for cancer or abnormal tissues before symptoms develop, is an effective way to prevent cancer or ensure early detection increasing the likelihood that a patient can be treated effectively. Cancer screening is especially important for breast, cervical, and colorectal cancers.  The United States Preventive Services Task Force (USPSTF) has national recommended guidelines for screening, which are included below and summarized in Table 1.

 

Table 1: USPSTF Screening Tests Recommendations for Breast, Cervical, and Colorectal Cancers for People of Average Risk

Source

 

For additional reference, the American Cancer Society’s (ACS) screening tests recommendations for breast, cervical, and colorectal cancers for people of average risk can be found in Table 2:

Table 2: American Cancer Society (ACS) Screening Tests Recommendations for Breast, Cervical, and Colorectal Cancers for People of Average Risk

Screening guidelines for breast cancer

A mammogram is used to screen women for breast cancer using X-ray images of the breast. To have a mammogram, a woman stands in front of a machine that compresses her breast while an image is taken. Mammograms may feel uncomfortable or even painful. After the test is complete, radiologists read the mammograms to determine if they are normal or abnormal. Abnormal mammograms do not necessarily indicate cancer, but rather highlight the need for additional testing to look for cancer.

As of 2018, the USPSTF recommends breast cancer screening biennially for women age 50 to 74, with no specific recommendations for women age 75 and over. Women age 40 to 49 should make an individual decision to screen. There are additional recommendations for women with high risk of breast cancer, including breast MRI. Also, women should discuss family history of breast cancer and genetic testing with their provider. If screening women 40 to 49 years of age, your program must consider weighing the risks and benefits. For NBCCEDP grantees, the CDC minimum data elements (MDEs) permit a small percentage of women to be screened outside of the ages 50-74.

Screening guidelines for cervical cancer

Two tests can be used for cervical cancer prevention. The Pap test, or Pap smear, is an exam used to check for changes to the cells of the cervix that can become cancerous if not treated. The HPV (human papillomavirus) test can look for the virus that may cause changes to cervical cells. To have a Pap test, a woman will recline on a table while a healthcare provider uses a speculum tool to widen the vagina. The provider will examine the woman’s body and will collect samples from on and around the cervix. Some people may also have the HPV test in addition to the Pap test. For these patients, cells from the same sample will be tested for HPV in a lab.

As of 2018, the USPSTF recommends screening women for cervical cancer every three years beginning at the age of 21 years and continuing to age 65. Women age 21 to 29 should have Pap testing every three years. HPV co-testing is not recommended for women under 30. The USPSTF recommends Pap testing every three years, co-testing every five years, or primary HPV testing every 5 years for women ages 30 to 65. They also generally recommend ending testing at 65 years for women with an adequate screening history (i.e. three consecutive negative cytology results or two consecutive negative co-testing results within 10 years, with the most recent test occurring within 5 years before stopping screening). Testing may be advised depending on the woman’s screening history and health status. Women with a high risk of cervical cancer may need to be screened more often and should follow their providers recommendations. Women within the age range of 21 to 65 should get regular Pap tests even if they are not sexually active.

Screening guidelines for colorectal cancer

Colorectal cancer normally develops from polyp growths within the colon or rectum. There are several types of screening tests that can be used to detect polyps or cancer. Stool tests include the guaiac-based fecal occult blood test (FOBT), the fecal immunochemical test (FIT), and the FIT-DNA test that are used to look for blood or cancer cells in the stool.22 A sigmoidoscopy test involves a health provider inserting a small tube into the rectum that can check for polyps or cancer in the rectum and lower colon. A colonoscopy is a similar exam, but is able to examine the entire colon and may also be able to remove polyps and cancer. A computed tomography (CT) colonography, or virtual colonoscopy, uses radiologic images and technology to display images of the colon.

As of 2016, the USPSTF recommends beginning colorectal cancer screening at age 50 and continuing through age 75.24 From ages 76 through 85, individual decisions should be made based on the patient’s health status and screening history. The FOBT, FIT, and FIT-DNA tests are recommended annually, although FIT-DNA can also be offered every three years. Colonoscopies are recommended every ten years, with CT colonoscopies and sigmoidoscopies recommended every five years. Alternatively, sigmoidoscopies can be recommended every ten years with FIT testing completed annually.

Staying up-to-date on screening guidelines

Cancer screening guidelines may change as new evidence emerges regarding the tests’ effectiveness for detection and preventing cancer mortality. For the USPSTF guidelines, programs and clinical providers can use the Electronic Preventive Services Selector (ePSS) to stay up to date. This application can be used online or downloaded to a mobile device so that USPSTF recommendations are easily accessible.

 

Overview of the National Breast and Cervical Cancer Early Detection Program (NBCCEDP) & Colorectal Cancer Control Program (CRCCP)

CDC is currently working with 13 Tribal awardees to improve access to cancer screening in Tribal communities through the National Breast and Cervical Cancer Early Detection Program (NBCCEDP) and the Colorectal Cancer Control Program (CRCCP) within the Division of Cancer Prevention and Control. An overview of these programs follows.

National Breast and Cervical Cancer Early Detection Program (NBCCEDP)

Through passage of the Breast and Cervical Cancer Mortality Prevention Act of 1990, CDC created the National Breast and Cervical Cancer Early Detection Program (NBCCEDP), a program providing low-income, uninsured, and underserved women access to timely breast and cervical cancer screening and diagnostic services. Currently, the NBCCEDP funds all 50 states, the District of Columbia, six U.S. territories, and 13 AI/ AN Tribal programs to provide screening services for breast and cervical cancer.

Following the passage of the Breast and Cervical Cancer Prevention and Treatment Act in 2000, states can offer women who are diagnosed with cancer in the NBCCEDP access to treatment through Medicaid. The following year, passage of the Native American Breast and Cervical Cancer Treatment Technical Amendment Act clarified that this option also applies to AIs/ANs who are eligible for health services provided by the Indian Health Service or by a Tribal organization.

Colorectal Cancer Control Program (CRCCP)

The CDC’s Colorectal Cancer Control Program (CRCCP) aims to increase colorectal cancer screening rates among people between 50 and 75 years of age by:

• Implementing EBIs described in The Community Guide and other supporting strategies in partnership with health systems
• Providing screening and follow-up services for a limited number of eligible people.

The CRCC initially started as a demonstration program providing colorectal cancer screening from 2005 to 2009 to low-income, uninsured or underinsured men and women. CRCCP currently funds 23 states, six universities, and one Tribal organization.

Tribal Awardees

This toolkit was developed in partnership with the current NBCCEDP and CRCCP Tribal awardees (listed in Table 3 below) to improve implementation of The Community Guide strategies to improve cancer outcomes in Indian Country. Site visits were conducted to those awardees between June and September 2017 to assess implementation of the Community Guide Strategies. These programs provided crucial insight into how the strategies are used in a diverse array of Tribal settings across the US (see Figure 1 below for a map of Tribal awardee locations) including rural communities, urban communities, IHS-direct service clinics, and 638 contracted clinics.

Key takeaways from these site visits are captured in the “Tribal Highlights” found in the next section, as well as in Section 6 on “Additional Lessons Learned from Tribal Programs.”

 

 

Additional Toolkit: Advancing Health Systems: Colorectal Cancer Screening within American Indian and Alaska Native Communities

Click here to download the American Indian Cancer Foundation’s toolkit, developed in partnership with NIHB, on colorectal cancer screening.

 

Small Media Examples from NIHB-funded Tribal Programs

• Winslow Indian Health Care Center Breast Cancer Survivor Video
• Red Cliff Community Health Center Screening Video
• Red Cliff Community Health Center Share the Care Video
• Sault Tribe Health Division Colon Cancer Screening Video