Background: An integrated cancer care network experienced rapid growth that ultimately led to the addition of nonclinically licensed patient navigators to the navigation team. This change prompted an evaluation of the barrier assessment being used and led to the finding that there were barriers not being identified. A new standardized barrier assessment based on the Supportive Care Framework for Cancer Care was developed to resolve gaps in barrier identification and provide a more holistic focus.
Objectives: To expand navigation barrier assessment to include elements beyond those of physical and practical care by incorporating the domains of the Supportive Care Framework for Cancer Care and comparing the number of barriers identified by the navigators using the existing tool with the number of identified barriers using the new barrier assessment.
Methods: A randomized, quantitative data collection was performed totaling the number of barriers identified per navigator in 2017 and again in 2018.
Results: Implementing the new barrier assessment tool using the Supportive Care Framework for Cancer Care resulted in a dramatic increase in the identification of barriers from 0.85 barriers per patient in 2017 to 3.3 barriers per patient in 2018.
Conclusions: Incorporating the validated Supportive Care Framework for Cancer Care into a standardized barrier assessment tool has provided the navigation team with an enhanced method to identify barriers that deter or prevent patients from receiving care. The increase in the numbers of identified barriers demonstrates the need for a standardized barrier assessment with a more holistic focus. It has also led to enhanced assessment skills of the navigators.
Patient navigation was initially proposed as a way to address known barriers to care.1 Barriers to care are those obstacles that prevent a cancer patient from accessing care, services, resources, and/or support. Addressing barriers to care has been noted to be a primary attribute of patient navigation from the earliest definition of patient navigation by C-Change in 2005, which in part defined it as “individualized assistance offered to patients, families, and caregivers to help overcome healthcare system barriers…”2 to one of the most recent in 2016, by the American College of Surgeons Commission on Cancer (CoC), “specialized assistance for the community, patients, families, and caregivers to assist in overcoming barriers to receiving care.…”3 In addition, the proposed DRAFT Revised Standards from the CoC released in May 2019 would put particular emphasis on barrier identification in Standard 8.1, “A navigation team is established to identify barriers to care in patients with cancer and implement a process to overcome the identified barrier.”4
The question for oncology patient navigation then becomes, how do we identify and determine barriers to care for the oncology patient? Freeman and Rodriguez, in their early work in patient navigation, identified 5 common barriers to care for patients who are uninsured or underinsured that included: (1) financial, (2) communication, (3) medical system, (4) transportation, and (5) emotional difficulties.5 Later, the literature frequently separated barriers into either system barriers (ie, those that exist at the healthcare system level) or personal/social barriers (ie, those found at the individual patient level).6,7 In a presentation at the Academy of Oncology Nurse & Patient Navigators Midyear Conference 2019, Bellomo, Johnston, and Latash cite the National Comprehensive Cancer Network (NCCN) classification of patient barriers found in the NCCN Distress Thermometer and Problem List for Patients. This classification of patient barriers includes: (1) practical, (2) family, (3) physical, (4) emotional, and (5) spiritual religious concerns.8,9 Although it is widely accepted that patient navigation, and particularly the oncology nurse navigator (ONN), looks at the whole person and conducts a holistic assessment,7 many barrier assessments seem to put a primary focus on certain categories of barriers, primarily practical needs or physical needs. The focus of this project was 1 oncology patient navigation program and the perceived need to expand its current barrier assessment to include a more holistic focus, and to do so in a standardized format utilizing a conceptual framework for supportive cancer care.
The cancer program at a large metropolitan hospital system experienced a period of tremendous growth after an affiliation with 2 large medical oncology groups. This affiliation led to the formation of an integrated cancer care network with over 30 medical oncology offices and 3 hospitals located throughout the state in which the system is located. This growth, while including not only a significant increase in patient numbers and geographic areas served, also led to a greater diversity in the patients seen and a noted increase in their psychosocial needs. To more effectively and completely meet the needs and barriers to care that were found, the oncology navigation team was expanded from ONNs to also include nonclinically licensed oncology patient navigators known as cancer care liaisons (CCLs). The primary focus of the CCLs was determined to be the practical barriers that oncology patients faced, including a survey of their practical barriers and connecting them to system and community resources that could assist them in overcoming these practical barriers. With the addition of the CCLs, an evaluation of current workflow and processes was conducted to ensure that there was clear role delineation. One area that was evaluated during that time was the current navigation barrier assessment being used. This barrier assessment had been developed from best practices and examples that were available to leadership at the program inception in 2010, along with what was believed to be the most prevalent needs of patients. The barrier assessment being used included 21 items (Addendum 1). It should be noted that over time, the “Other Barriers” category was used more and more frequently to capture needs not listed in the tool. Each of the above areas also had a “free text” area that allowed the ONNs at that time to enter additional information on the barriers to care.
It has been noted in the literature as important, and it was the intent of the patient navigation program at inception that the nurse navigators conduct a holistic, comprehensive patient assessment.7 However, after several years of use, there was concern that the barrier assessment in place was not effective for assessing or surveying the patients in a holistic manner and, in particular, did not effectively assess for all practical barriers, which is what the CCLs would be focusing on. This concern, along with feedback from the ONNs on the perceived gaps in the current barrier assessment, led to a decision that a modified or new barrier assessment was needed.
A review of the literature conducted by the leadership team of the oncology patient navigation program was not successful in finding a standardized navigation barrier assessment tool. During this search, the conceptual framework by Margaret Fitch, the Supportive Care Framework for Cancer Care, was identified.10 This framework was determined by the leadership team to be a strong foundation for not only the oncology patient navigation program but also for developing a holistic standardized barrier assessment tool that would assist in resolving the gaps found in barrier identification during the evaluation of the older tool. The Supportive Care Framework for Cancer Care categorizes patients’ needs into 7 domains. These domains are:
- Physical
- Informational
- Emotional
- Psychological
- Social
- Spiritual
- Practical
The use of the conceptual framework and these domains within the oncology patient navigation program is supported by the assertion that conceptual frameworks can help guide the navigation process and improve the effectiveness of programs.11
Objectives
The objectives of this project were twofold. The first objective was to modify and expand the navigation barrier assessment to include barriers to care that addressed patients’ needs in a more holistic manner by incorporating the 7 domains of the Supportive Care Framework for Cancer Care, thereby promoting an individualized approach to patient assessment. The second objective was to determine the effectiveness of the new Supportive Care Navigation Barrier Assessment by comparing the number of identified barriers utilizing the original barrier assessment against the number of identified barriers utilizing the newer barrier assessment.
The new Supportive Care Navigation Barrier Assessment was developed utilizing the 7 domains from the Supportive Care Framework for Cancer Care and placing current barriers into each of these domains. Oncology patient navigation leadership also took on the painstaking process of manually searching through the “Other Barriers” field on the original barrier assessments that were captured for a 3-month period and noting the barriers identified. These additional identified barriers were then placed into the most appropriate domains by navigation leadership and sent to the oncology patient navigation team for consensus as to whether they should be included in the new Supportive Care Navigation Barrier Survey. The oncology patient navigation team consisted of all team members, including 10 ONNs, 10 CCLs, and 2 additional members from the leadership team. Those with an overwhelming response rate (greater than 75%) from the team were then added to the new barrier assessment. In addition, oncology patient navigation team members were invited to submit any barriers that they thought had been missed. Although no additional barriers were noted by the team at this time, an additional practical barrier of physiological needs (food, clothing) was added within 2 months.
A randomized, quantitative data collection was performed by the oncology navigation program leadership. Random charts were chosen from 50 adult oncology patients who were new to the oncology patient navigation program in both 2017 and 2018 and who had been assigned to 1 of 5 ONNs. These 5 ONNs were chosen because they had all utilized the original barrier assessment in 2017 and had documented these identified barriers to care in the previous software system, and they had also administered the new Supportive Care Navigation Barrier Assessment in 2018 and documented those identified barriers to care within the newer software system. Although CCLs were in place in 2017, ONNs only were used for this comparison secondary to the experience they had with performing barrier assessments and the more complete nature of the barrier assessment that they do with the patient, which includes the physical and psychological aspects.
Results
In 2017, the average number of identified barriers found utilizing the original barrier assessment was 0.85 per patient. In 2018, the average number of identified barriers utilizing the new Supportive Care Navigation Barrier Assessment was 3.3. There was a marked increase of 2.45 barriers to care identified per patient.
Discussion
Incorporating the validated Supportive Care Framework for Cancer Care into a standardized barrier assessment tool has provided the oncology patient navigation team with an enhanced method with which to identify barriers that deter or prevent patients from receiving needed care. The resultant increase in identified barriers with the use of the Supportive Care Navigation Barrier Assessment demonstrates its success, as well as the need for a standardized barrier assessment with a holistic focus.
Two additional findings came from this project. The first finding was in the area of assessment skills. Prior to implementation of the new Supportive Care Navigation Barrier Assessment, training was conducted with both the ONNs and the nonclinically licensed navigators on motivational interviewing and the use of open-ended questions in conducting the barrier assessment. Each member of the oncology patient navigation team was provided with a laminated sheet (Addendum 2) to keep with them that provided the domains, the actual/potential barriers to care, and sample questions, words, or phrases that could be used to elicit information from the patient. It was important to the oncology patient navigation leadership team that there was an understanding that the Supportive Care Navigation Barrier Assessment was to be used in a conversational way with the patient, rather than as just another form that needed to be completed. The oncology patient navigation team reported that they felt that through the training conducted prior to the use of the new Supportive Care Navigation Barrier Assessment (Addendum 3) and the actual use of the tool, that their assessment skills had been enhanced and that they were able to more completely identify barriers that prevented their patients from receiving or continuing care.
The second finding was that with the identification of an increased number of barriers to care, there was a need for the oncology patient navigation team to further research, identify, and incorporate additional resources into the existing resource database to use in assisting patients. An example of some of the additional resources were things such as a pest control company willing to address infestations, a local cleaning company assisting with housecleaning, and another local nonprofit offering small grants for oncology patients to pay for things outside of treatments and medication.
One area that the oncology patient navigation leadership team felt strongly about after the Supportive Care Navigation Barrier Assessment was implemented was the need to change the term “assessment” to “survey” as it was being used by ONNs and CCLs. Although both the 2017 Oncology Nurse Navigator Core Competencies by the Oncology Nursing Society and the Core Competencies for Non-Clinically Licensed Patient Navigators from The George Washington University Cancer Institute both discuss assessment of patients, the oncology patient navigation leadership team felt that patient assessment is really within the scope of the ONN’s role, whereas the CCL is responsible for identification of needs.12,13 To this end, the CCLs are able to note physical and psychological symptoms that are mentioned by the patient in conversation but would not assess the patients any further regarding this. Any finding in either of these areas would then be handed off to the ONN for advanced exploration with the patient.
Additional plans of the oncology leadership team include: (1) adding training for new ONNs and nonclinically licensed oncology patient navigators in each of the 7 domains of the Supportive Care Framework for Cancer Care to further standardize survey administration; (2) further incorporate the Supportive Care Framework for all navigation functions, including onboarding, orientation, and annual competencies; and (3) further partner with additional outside organizations to leverage resources for identified barriers.
Limitations of the Study
One limitation of the study was the small sample size, which was secondary to the difficulty the oncology patient navigation leadership team had in accessing data from the earlier software and comparing them with data from the newer software where the Supportive Care Navigation Barrier Assessment is currently being recorded.
Another limitation of this study was the inclusion of only ONNs and not ONNs and CCLs. This was due in part to the longer length of time that the ONNs had been administering the barrier assessments, and also to use those employees who could be matched up within the older software and the newer software.
Conclusion
Assessment of barriers is an integral part of navigation and one of its primary attributes.1,3 As such, there is a demonstrated need for standardization in barrier assessment and the use of a framework to guide the navigation process and improve the effectiveness of the program.11 The Supportive Care Navigation Barrier Assessment provides both standardization and use of a conceptual framework. It is also ideally suited to allow for individualization within the domains by individual navigation programs.
References
- Wells KJ, Battaglia TA, Dudley DJ, et al. Patient navigation: state of the art or is it science? Cancer. 2008;113:1999-2010.
- Rosenthal ET. Why patient navigation needs a process and not necessarily a navigator. Oncology Times. 2012;34(8):24-25.
- American College of Surgeons. Commission on Cancer. Cancer Program Standards: Ensuring Patient-Centered Care. 2016 Edition. www.facs.org/-/media/files/quality-programs/cancer/coc/2016-coc-standards-manual_interactive-pdf.ashx. 2016.
- American College of Surgeons. Commission on Cancer. DRAFT Revised Standards. www.facs.org/~/media/files/quality%20programs/cancer/coc/draft_coc_revised_standards_may2019.ashx. 2019.
- Freeman HP, Rodriguez RL. The history and principles of patient navigation. Cancer. 2011;117(suppl):3539-3542.
- Vargas RB, Ryan GW, Jackson CA, et al. Characteristics of the original patient navigation programs to reduce disparities in the diagnosis and treatment of breast cancer. Cancer. 2008;113:426-433.
- Blaseg K, Daugherty P, Gamblin K. Oncology Nurse Navigation: Delivering Patient-Centered Care Across the Continuum. Pittsburgh, PA: Oncology Nursing Society; 2014.
- Bellomo C, Johnston D, Latash W. Unlocking Navigation Acuity. Academy of Oncology Nurse & Patient Navigators Midyear Conference 2019. May 2019.
- Vitek L, Rosenzweig MQ, Stollings S. Distress in patients with cancer: definition, assessment, and suggested interventions. Clin J Oncol Nurs. 2007;11:413-418.
- Fitch MI. Supportive care framework. Can Oncol Nurs J. 2008;18:6-14.
- McMullen L. Oncology nurse navigators and the continuum of cancer care. Semin Oncol Nurs. 2013;29:105-117.
- Oncology Nursing Society. 2017 Oncology Nurse Navigator Core Competencies. Pittsburgh, PA: Oncology Nursing Society; 2017.
- Pratt-Chapman ML, Willis LA, Masselink L. Core Competencies for Non-Clinically Licensed Patient Navigators. Washington, DC: The George Washington University Cancer Institute Center for the Advancement of Cancer Survivorship, Navigation and Policy; 2014.
