Development of a Cancer Patient Navigation Training Program for the Caribbean Context

July 2019 Vol 10, No 7

Categories:

Original Research
Kimberly Badal
Caribbean Cancer Research Initiative
San Fernando, Trinidad and Tobago
Elysse Marcellin
Mindwise Project
Diego Martin, Trinidad and Tobago
Kimlin Tam Ashing
Division of Health Equity
City of Hope Medical Center
Duarte, CA, USA

Available data report poor cancer patient outcomes in the Caribbean region attributable in part to challenges in coordination of timely and comprehensive treatment and management and lack of supportive services. We believe that an adapted model of patient navigation can have significant impact in addressing cancer treatment and management challenges across the Caribbean region. To our knowledge, no formal patient navigation programs currently exist. For the Caribbean context, we defined a cancer patient navigator (CPN) as one who is responsible for coordinating and streamlining care in a complex and resource-limited cancer care continuum; explaining diagnosis and treatment options specific to the setting; providing support in physical, practical, mental, and emotional challenges; educating and empowering patients in their journey; tracking patient medical records electronically; and addressing barriers to care. As a first step to introducing this role to the Caribbean, a comprehensive training program was developed. A multidisciplinary steering committee was formed to develop CPN core competencies, skill requirements, and training curriculum. Three competency domains were defined: patient navigation skills, research, and professional skills. A 5-day, 30-hour-contact patient navigation training program was conducted with 28 candidates from 4 Caribbean territories. Participants demonstrated significant improvement in knowledge acquisition (P <.001) between the pretest and posttest. All participants indicated that the CPN training will facilitate their patient care and that it was well administered. This inaugural CPN training program demonstrated utility for the Caribbean context. Future study is needed for monitoring and evaluation of the efficacy of the CPN role in the Caribbean setting.

Patient navigation was developed in response to feedback received from the National Hearings on Cancer in the Poor, spearheaded by the American Cancer Society in 1989.1,2 These hearings revealed that poor people experienced substantial barriers to accessing healthcare, including extreme personal sacrifices, and that existing educational programs were often culturally insensitive and irrelevant. Following these findings, the first patient navigation program was developed to focus on addressing barriers to care.2 Since then, patient navigation has been used across the healthcare industry around the world to address financial, transportation, emotional, communication, health system, and other barriers faced by patients requiring care.3-10

Currently, patient navigation focuses on offering support to patients in the areas of cancer prevention, detection, screening, diagnosis, treatment, and rehabilitation/survivorship.3,4,7,11-14 Navigators range from nonclinical laypersons to clinical oncology nurse navigators and are utilized across the healthcare continuum. Three main types of navigators include community health workers (CHWs), clinical patient navigators (such as registered nurses or social workers), and nonclinical lay navigators (eg, cancer survivor or caregiver).15,16 CHWs work within communities, specifically attempting to address barriers, facilitating communication, acting as liaisons, and providing education at a community level. They have been widely used to address several chronic conditions such as diabetes,17 asthma,18 HIV and AIDS,19 and cancer.20-23 Layperson or clinical (nurse) navigators offer support directly to patients within the healthcare system. They sometimes differ based on their expertise and their model of service delivery, with clinical navigators offering more in-depth analysis and translation of clinical information in easy-to-understand ways. Programs are delivered via multiple platforms, including telephone, in-person (at home and other), mail, and e-mail.24 Navigators offer support by aiding along the healthcare continuum, such as assisting with appointment scheduling, accompaniment, health literacy, language support, psychosocial support, among others. Regardless of the design, each iteration of navigation service delivery aims to improve screening, diagnosis, treatment, and overall patient satisfaction and quality of life.

In the Caribbean, cancer is one of the top 3 causes of death.25-27 Several factors contribute to this, including lack of access to comprehensive, timely, and affordable care; influence of pervasive myths and taboos in absconding from treatment; and late diagnosis.27,28 An adapted model of patient navigation can potentially have significant impact in addressing these factors and thereby improving cancer management, quality of life, and survival.

To our knowledge, there are only a few persons in the Caribbean who have received patient navigation training abroad and operate independently at private institutions as support staff. However, there is no formal, coordinated patient navigation programs in the Caribbean public healthcare sector or a training program. Nursing staff and doctors currently administer navigation functions as an accepted yet informal part of their duties.

Cancer Patient Navigation Defined for the Caribbean Setting

For the Caribbean setting, we envision that a cancer patient navigator (CPN) will be responsible for coordinating and streamlining care in a complex and resource-limited cancer care continuum; explaining diagnosis and treatment options specific to the setting; providing support in physical, mental, and emotional challenges; educating and empowering patients in their journey; tracking patient medical records electronically; and addressing barriers to care.

Consistent with other programs, we expect that there will be both clinical and lay navigators, but the exact program structure, administration, and roles of clinical and lay navigators will differ per hospital and territory as the role is introduced into the Caribbean. It was therefore important to develop a training program that is sufficiently broad to cover all anticipated CPN duties.

Training Program Objective

As a first step toward introducing patient navigation to the Caribbean, the Caribbean Cancer Research Initiative (CCRI) developed a cancer navigator training program. This program was modeled after the National Cancer Institute and American Cancer Society patient navigation training program in the United States.29 This program was chosen as a model due to the extensive reporting that exists. The training program was designed to locally train clinical and lay navigators, to contribute to the continuing education for current navigators in the future, and to build overall capacity among medical providers and laypersons in the Caribbean region.

Training Program Development

Steering Committee

A multidisciplinary steering committee consisting of a behavioral scientist, 2 oncology registered nurses and educators, a clinical psychologist, 5 cancer survivors, a cancer researcher, a physician, and an experienced oncology nurse navigator was formed in Trinidad and Tobago. The expertise of this committee was chosen to reflect the specialties and perspectives needed to inform patient navigation. The steering committee had the following objectives, which were achieved over the course of four 2-hour meetings:

  1. To develop a comprehensive list of CPN core competencies
  2. To determine CPN skill requirements
  3. To develop a training program and curriculum that met the core competencies developed

Patient Navigator Skill Requirements and Participant Selection

The minimum skill requirements for a lay and clinical navigator are shown in Table 1.

developmentofacancerpatient_table1.png

All participants who met the skill requirements were required to fill out a form-based application with 4 short essay-type questions (Table 2) and provide a curriculum vitae. Participants who gave complete responses and adequately conveyed interest in the program at this stage were then invited to a 30-minute scenario-based interview.

developmentofacancerpatient_table2.png

Core Competencies

Eight core competencies in 3 domains were developed with consideration of the general scope of work for clinical and lay CPNs and the most pressing health system challenges for local cancer care. To develop these competencies, the steering committee first listed the anticipated duties of a CPN for the Caribbean setting and the skills required for each. These duties were translated into competencies and grouped into skill domains according to similarity. As seen in Table 3, the competency domains were patient navigation skills, research, and professional skills similar to the domains presented elsewhere.30

developmentofacancerpatient_table3.png

developmentofacancerpatient_table3-2.png

The patient navigation skills domain included 4 competencies: patient advocacy and empowerment; education and guidance; support; and knowledge and resource mapping. Patient advocacy and empowerment involves encouraging patients to keep track of and ask pertinent questions related to their care. It also involves empowering patients to be aware of their rights and the legal avenues that can be pursued in cases of malpractice or infringement on their rights. Education and guidance focus on education about the diagnosis, what to expect, resources available, and guidance through the public and private healthcare systems. Support involves using specific tools to coach patients and family through difficult moments and maintaining a disposition that makes patients comfortable to be open and share. Knowledge and resource mapping involve being able to seek out resources to address patient needs and being knowledgeable of how to access current best-practice treatment and management guidelines.

The research domain is important as the CPN has a significant role in encouraging patients to participate in research that evaluates program efficacy and other studies related to cancer epidemiology, behavioral science, etc. They also play a critical role in tracking accurate data to inform these studies. The latter role is important as there currently is no comprehensive national health information system in any Caribbean territory, making data collection a laborious process.

The professional skills domain included 3 competencies: professionalism and collaboration, communication, and self-care. The professionalism and collaboration competency emphasizes the importance of collaboration between the CPN and the multidisciplinary patient care team; adherence to ethical principles of privacy, autonomy, and confidentiality in patient navigation; and how to effectively deal with professional conflict. The communication competency involves gaining tools to effectively facilitate communication among patients, caregivers, family, medical staff, and the CPN. Personal care competency emphasizes the need for self-awareness and having tools to deal with common challenges among healthcare professionals such as depression, compassion fatigue, coping with loss of a patient, and personal conflicts.

Curriculum Topics and Learning Objectives

A 5-day training program was developed with the 11 curriculum topics and corresponding learning objectives shown in Table 4. Expert lecturers were required to tailor the lecture for the lay navigator (ie, by creating content that was easy for a person with no clinical experience in cancer to understand). This applied particularly to lectures on local cancer care pathways, clinical resource mapping, cancer biology, treatment, and management algorithms. Lecturers were also required to address the core competencies assigned to the curriculum topic and to use interactive tools such as group work, case studies, role playing, and scenarios in teaching.

developmentofacancerpatient_table4.png

Training Program Evaluation

Participant Demographics

In the first edition of this program, CCRI trained 26 persons from 4 Caribbean territories (Trinidad and Tobago, Jamaica, St. Lucia, and Antigua). Participant demographics are shown in Table 5. Most participants were female (92.9%), possessed a medical background (78%) (registered nurses, social work, clinical psychology, and radiation therapy), were currently employed full- or part-time (85.7%), had at least an undergraduate degree (67.9%), and had a family or personal history of cancer (78.6%). Only 1 participant was a cancer survivor.

developmentofacancerpatient_table5.png

Knowledge Acquisition

The efficacy of the program was evaluated through a pretest and a posttest. Each lecturer was asked to submit 3 to 5 questions, which resulted in a 45-question multiple-choice test. The test asked demographic questions such as sex, medical background, current employment, education, and family/personal cancer history. Each multiple-choice question had 4 answer options. The majority of questions assessed the largest domain of navigation skills (75.6%) followed by the professional (15.6%) and research (8.9%) skills (Table 6).

Table 5 shows that there was a significant improvement (P <.001) in knowledge acquisition between the pretest and posttest overall and across all groupings by medical background, employment, education, and personal/family history of cancer. There was also improvement among females, but not males. Males had a pretest score similar to that of females, but lower posttest scores (Table 5). Both males (n = 2) had a medical background (social worker and oncology nurse). We posit that this lack of improvement among males could be because the program format or evaluation method did not facilitate their learning style. However, this is difficult to confirm due to the small sample size.

developmentofacancerpatient_table5.png

Also, there was significant improvement in knowledge acquisition for the navigator skills and professional skills domains (P <.001) but not in research skills (P = .08) (Table 6). The lack of improvement in the research skills domain is explained either by the cohort having a high level of preliminary understanding for the research principles taught (indicated by the high pretest score [3.5/4]) or by the number (n = 4) or type of questions being insufficient to adequately test this competency. We also investigated whether age, sex, medical background, employment status, education, or family/personal history of cancer was a predictor of pretest and posttest scores and the difference between these scores in a regression model. None were found to be predictors (not shown).

developmentofacancerpatient_table6.png

Program Evaluation

Quantitative

At the end of the program, a 16-question survey with a 5-point Likert scale from strongly agree to strongly disagree was administered. Approximately 100% of participants either agreed or strongly agreed with the following:

  1. Program objectives were clear and met
  2. The content was relevant, organized, easy to follow, with appropriate teaching methods used and adequate interaction
  3. Facilitators were knowledgeable and answered questions well

Qualitative

Two open-ended questions were included in the program evaluation. Feedback on the facilitators was that they were well chosen, knowledgeable, and interactive. Two facilitators received feedback for improvement. General program feedback was that it was well organized and excellent overal. Points for improvement include extending the program length to 2 weeks, thereby increasing the time for lectures, and to include other topics such as customer service training and more navigation simulations.

Training Program Qualification

Participants were required to have a 75% attendance and a 70% pass rate on the posttest to receive a certificate of successful completion. Of the 28 persons trained, 26 qualified.

Discussion

Cancer patient navigation is new to the Caribbean region and has significant potential to address several local cancer treatment and management challenges and barriers to care. To build local sustainable capacity, a training program was needed to educate persons to address the specific challenges and nuances involved in working in cancer management in the region.

The cancer treatment and management modules of this inaugural program were focused on breast and pancreatic cancer because these would be the first 2 cancer types to be navigated for the CCRI Cancer Navigator Program, based on funding. Also, we thought that selecting cancer types as a point of focus for the treatment and management modules of each program would allow for deeper learning and understanding to facilitate the CPN’s role in providing education on diagnosis, treatment, and next steps. However, participant feedback indicated that these lectures were highly technical and content heavy even for persons with medical background, although they were tailored to the lay navigator. To address this, we will include a basic general oncology overview lecture prior to the disease-specific modules, or remove disease-specific modules from the in-person training program but maintain it as continuous online training modules.

It is unlikely that CPNs specific to 1 disease would develop in the Caribbean due to resource constraints, but in some of the larger islands it may be feasible to have CPNs focus on navigating 3 or 4 cancer types to allow for a degree of specialization. As such, each future training program may continue to highlight different cancer types, and associated online modules will be created for continuous access by all navigators.

We anticipate that the need for CPNs will grow as the utility of their function is realized by public and private sectors, and as patients are impacted positively through the one-on-one support, education, and guidance provided. We hope that this training program will become the standard for training CPNs in the Caribbean region, thereby ensuring standard core competencies for all CPNs. As a next step, the efficacy of implemented cancer patient navigation programs will be evaluated.

Future Considerations

The following will be considered as improvements for the next training installment: (1) providing basic general oncology lectures prior to the disease-specific lectures, (2) extension of program length to facilitate more time for lectures, and (3) extension of the pretest and posttest length to include more questions assessing the research skills domain.

Conclusion

A cancer patient navigation training program for the Caribbean context was successfully developed. The inaugural training demonstrated acceptability and utility. The core competencies, curriculum, and learning objectives were designed to address the limitations and differences in cancer care between Caribbean territories. This training will be used to train new CPNs and as yearly continuing education for new CPNs to be complemented by other training modules.

Funding

This program was funded by the Union for International Cancer Control SPARC Metastatic Breast Cancer Challenge.

Acknowledgments

We would like to thank the members of our steering committee, specifically Dr Oscar Ocho, Ms Valerie Sealey-Tobias, Ms Vilma Gordon, and Dr Gerard Antoine, for their contributions to developing this training program. We would also like to thank the University of the West Indies School of Nursing, St. Augustine, Trinidad and Tobago, for hosting the program.

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Last modified: September 5, 2019

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