Abstract
We describe an iterative three-phase approach used to develop a cancer survivorship health-coaching intervention to guide self-management and follow-up care for post-treatment breast, colorectal and prostate cancer survivors. Informed by theory (e.g., Cognitive-Social Health Information Processing Model (C-SHIP)), relevant literature and clinical guidelines, we engaged in a user-centered design process. In phase I, we conducted depth interviews with survivors of breast (n=34), prostate (n=4), and colorectal (n=6) cancers to develop a health coaching prototype. In phase II, we utilized user-testing interviews (n=9) to test and refine the health coaching prototype. For both phases, we used a template analysis independently coding each interview. In Phase I, majority (n=34, 81%) of survivors were positive about the utility of health coaching. Among these survivors (n=34), the top areas of identified need were: emotional support (44%), general health information (35.3%), changes in diet and exercise (29.3%), accountability and motivation (23.5%), and information about treatment effects (17.7%). The prototype was developed and user-tested and refined in Phase III to address the following concerns: (1) the amount of time for calls, (2) density of reading materials, (3) clarity about health coaches’ role; and, (4) customization. Collectively, this resulted in the development of the Extended Cancer Educational for Long-Term Cancer Survivors health coaching program (EXCELSHC), which represents the first cancer survivorship follow-up program to support follow-up care designed-for-dissemination in primary care sehings. EXCELSHC is being tested in a clinical efficacy trial. Future research will focus on program refinement and testing for effectiveness in primary care.
Keywords: breast cancer survivors, cancer, cancer survivorship, colorectal survivors, health-coaching, prostate cancer survivors, self-management, colorectal cancer survivors, primary care
BACKGROUND
One-third of the 16.9 million cancer survivors alive in the U.S. have survived breast, colorectal or prostate cancers.[1] Survivors of these cancers are at increased risk for and experience a myriad of treatment and cancer-related effects, including: pain, fatigue, distress, cardiovascular risks, bone loss, cancer recurrence, and secondary cancers.[2] Cancer treatment effects require management for the duration of a cancer survivor’s life. This has led to the adoption of chronic disease models to guide long-term cancer survivorship care. Chronic care models emphasize the need for empowered patients who are supported to engage in productive discussions and goal setting with a variety of health care providers to identify and manage new challenges as they arise.[3]
Cancer survivors need information and supports to develop post-treatment goals and facilitate productive partnerships with their healthcare teams to optimize their post-treatment wellness. [4] Self-management is the ability to manage the symptoms and consequences of living with a chronic condition, and includes navigating the physical, social and lifestyle changes required to optimize well-being.[5] Core self-management skills include problem-solving, decision-making, identifying and utilizing information, behavior change, and collaborating with care providers.[3, 6] Cancer survivors’ self-management tasks are those that support effective communication exchanges between the multiple healthcare providers to manage symptoms, make health-related decisions, and support behavior change.[3, 7] A recent systematic review of cancer survivor self-management interventions concluded that interventions that focus on the daily wellness activities of post-treatment cancer survivors are needed.[8]
Health-coaching is a patient-centered educational strategy that uses a relational approach to promote sense making of health information and facilitate goal setting to support behavioral change (e.g., risk management, behavioral modification, etc.).[9] Health-coaching has emerged as an essential part of "lifestyle" medicine in primary care, shown to be effective in the prevention and treatment of conditions impacted by modifiable behavioral risk factors.[10] A recent review suggests that health-coaching approaches in cancer survivors improves quality of life, mood and physical activity, but have not improved self-efficacy. [11] In primary care, health-coaching applications are utilized to foster self-management capabilities related to chronic illnesses needs.Medical assistants or community health workers are often primary care health-coaches, these individuals are trained on-the-job and typically have limited (e.g., medical assistance training) or no formal clinical training [12, 13], Health coaches in primary careact as bridge between the clinician and the patient, facilitate the navigation of the health care system, provide emotional support, and serve as a consistent point of care continuity.[14, 15] Promising survivorship self-management interventions that utilize in-person or telephone-based support have demonstrated improvements in overall quality of life and self-efficacy; however, these interventions tend to focus on recently post-acute survivors still attached to an oncology setting. [16, 8] The potential of health-coaching to support cancer survivorship follow-up and improve patient self-efficacy after transitioning from post-acute cancer care remains understudied.[11]
Presently, there are limited health-coaching interventions available to guide cancer survivors’ self-management activities that are disseminable in the primary care context. Therefore, we developed the Extended Cancer Education for Longer-term Survivors (EXCELS) health-coaching intervention (EXCELSHC) This study describes the development and usability testing of EXCELSHC, that is currently being compared to other self-management strategies (e.g., e-Health intervention called e-EXCELS) in an ongoing randomized controlled trial.[17, 18]
METHODS
Overview of procedures
The development of EXCELSHC used an iterative, three-phase approach (See Figure 1. Overview of the EXCELSHC Development Process). In Phase I, we conducted a rapid literature review focused on health-coaching models in primary care and reviewed the American Cancer Society Primary Care Cancer Survivorship guidelines [19–21] to develop patient-facing worksheets. These worksheets were designed to inventory: (1) cancer surveillance adherence; (2) general follow-up care adherence; and, (3) cancer-related symptoms specific to each cancer type. Based on the health-coaching literature review, we designed an interview schedule to elicit feedback on the utility of health-coaching for survivors, and the preferred structure, process, and tailoring needs for the EXCELSHC intervention. For phase II, based on initial user input, we refined the worksheets to develop the EXCELSHC manual prototypes and conducted user/usability testing interviews. In the Phase III, user-testing refinements were made and the production of the EXCELSHC manuals and program were completed.
Figure 1.

Overview of the EXCELSHC development process
Guiding theory
The content and design of EXCELSHC was guided by the Cognitive-Social Health Information Processing Model (C-SHIP), which emphasizes how individuals process information about cancer threats and prevention options based on their perceived vulnerability, disease characteristics, and self-efficacy expectations, goal/values, and, coping strategies[22, 23], EXCELSHC uses a relational approach to support the processing of tailored cancer survivorship information that is relevant to each cancer survivor’s experience, symptoms, and personalized health related goals. The EXCELSHC intervention aims to: (1) promote accurate processing of recurrence risk and other post-treatment health related risks; (2) identify emergent or ongoing treatment symptoms; (3) align beliefs and expectations about need for risk-based preventive care and management of existing sequelae based on current guidelines and evidence; and (4) identify action steps to encourage guideline concordant follow-up care.
Phase I:
Rapid Literature Review
The research team’s initial step was to conduct a rapid review of the literature relevant to health-coaching interventions in primary care.[15, 24] A recent synthesis of telephone-based health-coaching interventions in primary care reported that ‘intermediate risk’ patients who received health-coaching interventions primarily focus on secondary prevention and lifestyle risk factor management and tend to be unscripted.[15] Further, in populations characterized as “people with chronic conditions where the focus of the intervention is mainly secondary prevention,” telephone health-coaching most often included: self-management skills, assistance with motivation and goal setting, and standard information and monitoring.[15] We then mined the primary care health-coaching literature for operational aspects of these interventions (e.g., number of telephone calls, length of calls, intervals between calls and type of interventionist who served as health-coaches) and used this to develop the interview schedule for phase I interviews to inform EXCELSHC design.
Patient Facing Worksheets
Based on the relevant literature (e.g., self-management for post-acute treatment cancer survivors), [3] cancer survivorship and preventive health services guidelines [19, 21, 20] and C-SHIP constructs, a content map was developed. Content map domains included: (1) follow up care procedures; (2) communicating with healthcare teams; (3) emotional concerns; (4) healthy lifestyle; and (5) skills and resources. Based on the content map, patient facing worksheets focused on: (1) cancer surveillance adherence, (2) general follow-up adherence; and, (3) cancer related symptom trackers and were presented to survivors for Phase I during the interview process.
Target User Information Needs and Design Preferences
Phase I interviews focused on target user input (e.g., survivors) about structure and delivery process decisions and to elicit feedback about the content (e.g., patient-facing worksheets). Phase II interviews focused on feedback about the design and content of the health-coaching workbooks and the preliminary structure and process for the health-coaching intervention. The study was approved by the IRB at Rutgers Biomedical and Health Sciences (Protocol number 2013003309).
Phase I Participants
Between November 2014-April 2015 a purposive sample of early stage (I-III) breast, colorectal and prostate cancer survivors were recruited through community-based survivorship organizations, local oncology and primary care practices, and the Rutgers University Faculty and Staff on-line bulletin. Survivors were eligible to participate if they: (1) were post-treatment (except maintenance therapy); (2) had breast, colorectal, or prostate cancer; (3) could read and speak English; and (4) were able to provide informed consent. Interested participants who called the research office received a study description and were screened for eligibility.
Data Collection—Phase I—Health-Coaching Needs, Preferences and Design
Phase I patient interviews were semi-structured, lasted approximately 70 minutes, and were conducted in-person in the research office or in community settings (e.g., libraries, etc.). Graduate-level trained researchers obtained signed written consent and conducted the interviews. Interviews were audio-recorded and transcribed verbatim. Participants received a $20 gift card. A description of what a health coach was provided (See Text Box 1) and survivors were asked about: (1) their willingness to use a health coach; (2) aspects they would find useful; (3) what topics they would want a health coach to discuss; and, (4) what would not find useful or helpful. Domains of interest included: self-management of cancer care follow-up, information seeking and preferences, reactions to the concept of health-coaching to guide follow-up care, EXCELSHC patient-facing worksheets and program preferences (e.g., time on phone, intervals between calls, etc.). Interviewers probed about supports and informational needs and explored how (and if) these needs changed over time.
Text Box 1. Description of Health Coach.
A health coach is a person trained to help survivors set and achieve goals related to their care and wellness. Health coaches have expertise in helping people set goals and then develop a plan to take action. Health coaches are not experts in cancer care with a lot of specialized cancer knowledge.
Phase II—Usability/User Testing
Phase II user testing was conducted using a guide based on usability engineering principles to refine the design/content, program delivery and perceived utility of EXCELSHC. [25] The observation and interview took approximately 50 minutes and ascertained needed formatting, design (e.g., layout and flow) and content changes. Interviewers described the purpose of EXCELSHC, provided brief description of the overall program and gave participants a cancer-site specific health-coaching workbook. Interviewers described the goal of each call and how the manual worked in conjunction with questions the health-coach used to prompt users’ impressions. Patients were asked to “think aloud” as they flipped through the workbook and to give overall impressions about the call descriptions. Patients were encouraged to provide extemporaneous feedback based on their impressions. If participants were reserved, prompts were used about specific content in the calls or manuals. For example, for call one we asked, “when you see the label “Survivor Follow-up Care” what does that mean to you?”
Phase III—EXCELSHC Prototype Refinement
Phase III prototype refinement of EXCELSHC was the identification of themes from Phases I and II that reduce survivors’ acceptability of a health coaching program and the formulation of design solutions for the final intervention.
Analyses
All data were analyzed using a content/template based analytic approach to reduce and synthesize patient preferences for content preferences, functionality and usability. Our analysis was aided by ATLAS.ti version 7 software.[26] Two coders, who jointly coded 50% of the cases, completing the remaining cases after the codebook was established, led analysis. At weekly research team meetings, key themes were discussed and coding discrepancies were resolved through a consensus approach.[27]
RESULTS
Participant characteristics
Table 1 presents the demographics and overall characteristics of cancer survivors from both Phase I and II (N=51). In the sample overall, participants had a history of breast (66.7%), prostate (17.6%), and colorectal (15.7%) cancers. A majority of survivors were Caucasian (62.7%), with one-third of the sample identified as African American. Survivors across the continuum of survivorship were represented, including 21.6% in the early phase (<2 years post-treatment), 31.4% between two and five years, and over half ‘longer term’ survivors with five or more years since treatment. A majority of the sample were college educated with most having some college or a bachelor’s degree (66%) or a graduate degree (22%).
Table 1.
Characteristics of the Study Sample
| Total (N=51) | Phase 1 (n=42) | Phase 2 (n=9) | ||||
|---|---|---|---|---|---|---|
| Frequency* (n) | Percent (%) | Frequency (n) | Percent (%) | Frequency (n) | Percent (%) | |
| Age, years | ||||||
| Median | 61 | 63 | 55 | |||
| Range | 39-84 | 39-84 | 44-65 | |||
| Race | ||||||
| White | 32 | 62.7 | 27 | 64.3 | 5 | 55.6 |
| African-American | 18 | 35.3 | 14 | 33.3 | 4 | 44.4 |
| Other | 1 | 2.0 | 1 | 2.4 | 0 | 0.0 |
| Ethnicity | ||||||
| Hispanic | 1 | 2.8 | 1 | 3.7 | 0 | 0.0 |
| Non-Hispanic | 35 | 97.2 | 26 | 96.3 | 9 | 100.0 |
| Cancer Type | ||||||
| Breast | 34 | 66.7 | 29 | 69.0 | 5 | 55.6 |
| Colorectal | 9 | 17.6 | 6 | 14.3 | 3 | 33.6 |
| Prostate | 8 | 15.7 | 7 | 16.7 | 1 | 11.6 |
| Cancer Stage | ||||||
| 1 | 31 | 60.8 | 29 | 69.0 | 2 | 22.2 |
| 2 | 10 | 19.6 | 6 | 14.3 | 4 | 44.4 |
| 3 | 10 | 19.6 | 7 | 16.7 | 3 | 33.3 |
| Years Post-Treatment | ||||||
| <2 | 11 | 21.6 | 7 | 16.7 | 4 | 44.4 |
| 2-5 | 16 | 31.4 | 14 | 33.3 | 2 | 22.2 |
| 6- 10 | 14 | 27.5 | 11 | 26.2 | 3 | 33.3 |
| 10+ | 10 | 19.6 | 10 | 23.8 | 0 | 0.0 |
| Marital Status | ||||||
| Single | 9 | 17.6 | 8 | 19.0 | 1 | 11.1 |
| Divorced | 14 | 27.5 | 7 | 16.7 | 7 | 77.8 |
| Married | 26 | 51.0 | 25 | 59.5 | 1 | 11.1 |
| Widowed | 2 | 3.9 | 2 | 4.8 | 0 | 0.0 |
| Employment | ||||||
| Full-time | 28 | 54.9 | 21 | 50.0 | 7 | 77.8 |
| Part-time | 7 | 13.7 | 7 | 16.7 | 0 | 0.0 |
| Unemployed | 15 | 29.4 | 14 | 33.3 | 1 | 11.1 |
| Income | ||||||
| ≤ $39K | 5 | 10.0 | 5 | 11.9 | 0 | 0.0 |
| 40K- 79K | 13 | 26.0 | 12 | 28.6 | 1 | 11.1 |
| 80K+ | 32 | 64.0 | 24 | 57.1 | 8 | 88.9 |
| Education | ||||||
| HS or less | 6 | 12.0 | 5 | 11.9 | 1 | 12.5 |
| Some college or BA | 33 | 66.0 | 28 | 66.7 | 5 | 62.5 |
| Graduate + | 11 | 22.0 | 9 | 21.4 | 2 | 25.0 |
Numbers may not add to total due to missing data
Phase I: Content Analysis
Content analyses of the survivor interviews indicate most survivors wanted access to a health-coach to guide their longer-term follow up care (n=34, 80.9%)(see Table 2). Among survivors who wanted access to a health-coach, there was wide variation on the areas of need. The top uses for health-coaching identified across the sample included: (1) emotional support (44.1%); (2) support of general health (35.3%); (3) changes to diet and exercise (29.4%); (4) accountability and motivation (23.5%); and, (5) information about late and long-term treatment effects (17.7%). There were variations based on cancer types in terms of desired support from health-coaches. Breast cancer survivors wanted emotional support (54%), support of general health (31%), support to change diet and exercise (26.9%), accountability and motivation (19.2%), and information about treatment effects (19.2%) from a health-coaching program. Colorectal cancer survivors similarly endorsed the need for support for general health (75%) and diet and exercise (75%) as a high priority and accountability (25%), and information about treatment effects (25%) as low priority, with no colorectal cancer survivors desiring emotional support from health-coaches. Prostate cancer survivors were most interested in accountability and motivation from health-coaches (66.6%).
Table 2.
Results of Content Analysis from Design (I) and User-Testing Phases (II) and Design Responses
| Phase I: Patient Feedback during Content and Design Decision-Making (n=42) | |||||||||
|---|---|---|---|---|---|---|---|---|---|
| Breast | CRC | Prostate | Total | ||||||
| N | % | N | % | N | % | N | % | Selected Quotes | |
| Want a HC | 26 | 79 | 4 | 80 | 3 | 50 | 34 | 80.9 | “Sometimes you’re the last person to worry about you, and think kind of will push you.” BC 010 |
| Top five uses among survivors who want HC (n=34) | |||||||||
| Emotional support | 14 | 54 | 0 | 0 | 1 | 30 | 15 | 44.1 | “Having a coach that helps you, encourages you and motivates you to stay on the right track…” BC 008 |
| Support general health | 8 | 31 | 3 | 75 | 0 | 0 | 12 | 35.3 | “Someone who is knowledgeable, and I can ask all my questions to because I don’t even know what questions I need to ask.” BC 056 |
| Diet/exercise | 7 | 26.9 | 3 | 75 | 0 | 0 | 10 | 29.4 | “It would have been good if I had somebody to lead me through all of that [rather] than me going through it alone.” BC 064 |
| Accountability/motivation | 5 | 19.2 | 1 | 25 | 2 | 66.6 | 8 | 23.5 | “Everybody needs a prod in the right direction.” PC 007 |
| Info about treatment effects | 5 | 19.2 | 1 | 25 | 0 | 0 | 6 | 17.7 | “…direct you to resources that you might need along the way..” BC Oil |
| Top Concerns about HC among survivors who want HC (n=34) | |||||||||
| Too busy and/or calls too frequent | 5 | 19.2 | 1 | 25 | 1 | 25 | 7 | 20.6 | “constant repetition of calls…” CRC 001 |
| HC characteristics | 4 | 15.4 | 0 | 0 | 2 | 50 | 6 | 17.7 | “Not knowing who the coach is..” PC 006 |
| Approach of HC | 6 | 23.1 | 0 | 0 | 0 | 0 | 6 | 17.7 | “Might be too pushy…” BC 10 |
| Not customized | 1 | 3.8 | 1 | 25 | 1 | 25 | 3 | 8.8 | “It would have to be patient specific.” CRC 005 |
| Top Reason Survivors did not want HC (n=8) | |||||||||
| Doesn’t think they need one | 3 | 100 | 1 | 50 | 75 | 7 | 87.5 | “I am more self-reliant than relying on others…”PC 003 | |
| Phase II: User Testing Top Functions of Health-Coaching Prototype (n=9) | |||||||||
| Breast | CRC | Prostate | Total | ||||||
| N | % | N | % | N | % | N | % | ||
| Symptom-tracker connected to information | 4 | 80 | 1 | 50 | 1 | 100 | 6 | 66.7 | “Symptom-based checklist that directs me to educational material” [best feature of prototype] UT 001, AA woman, age 59, dx 2009 |
| Organization of the HC calls | 3 | 60 | 0 | 0 | 1 | 100 | 4 | 44.4 | “That the manual is organized by call” UT 003, AA woman, age 47, dx 2009 |
| Developing goals/plan | 4 | 80 | 0 | 0 | 1 | 100 | 4 | 44.4 | “Forces you to stop and think about your goals… ” UT 002 AA woman, age 65, dx 2014 |
| Phase III: Salient Concerns from Phase I and II and Design Responses | |||||||||
| Concern | Nature of Concern | Design Response | |||||||
| Too busy/time commitment | • calls come in when busy • not having time for call despite scheduling • finding 20 minutes when house quiet enough |
✓ Flexible scheduling guided by patient preference ✓ Calls range from 15-20 minutes ✓ Flexible about what patient needs to be attentive without too many constraints |
|||||||
| Too information dense | • ‘This is a lot of work’ • [manual] is ‘voluminous” • Amount of reading in manual |
✓ Further condensed information sheets and worksheets ✓ Orient HC participants to manual during 1st call clarifying how to use print material ✓ Focus on what can be done for specific problems |
|||||||
| HC approach | • Judgmental, pushy, nagging or preachy HCs | ✓ Non-judgmental, encouraging stance ✓ Trained on key issues faced by cancer survivors |
|||||||
| Customization | • General problems that aren’ tailored to cancer or problems that are important to patients | ✓ Program tailored by cancer site (and sex for CRC), symptoms, patient goals/priorities | |||||||
Acronym key: BC=Breast cancer; CRC=Colorectal Cancer, dx=diagnosed; HC=Health-Coaches, PC=Prostate Cancer; UT=User Tester
Note: denominators are based on number of participants who answered the question
Phase I user interviews for EXCELSHC identified the top five reservations that survivors’ who wanted a health-coach had about participating in a health-coaching program. Survivors concerns about participation included: (1) receiving too many calls or calls when they were busy (20.6%); (2) the characteristics of the health-coach (e.g., background/training, cancer experience) (17.7%); (3) the approach of the health-coach (e.g., too pushy or judgmental) (17.7%); and (4) the program not being customized to their needs/challenges (8.8%). Among cancer survivors who would not want to participate in a health-coaching program, 87.5% did not feel they needed one and 33.3% felt the time commitment was an issue.
Based on content domains and user feedback, the research team met weekly to refine the conceptualization, structure and presentation, functionality, and tailoring scheme of EXCELS HC workbooks and to sketch out the prototype manualized, delivery procedures. The EXCELSHC prototypes were organized by health-coaching call, and each call had informational and/or interactive worksheets. Informational worksheets were designed to provide education about the self-management tasks of post-cancer treatment. They tailored how this information related to specific patient issues and experiences, prompting a self-assessment, with the health-coach acting as a guide, raising questions and exploring identified issues in greater depth. For example, survivors were asked to check off a list of any ongoing late and long-term effects that require symptom management. Based on their selected issues, the coach would guide the participant to educational worksheets at the back of the workbooks. In the next call, the health-coach would review if the information was helpful and if the patient had taken any actions to manage the specific symptom based on what was learned.
Phase II: User/Usability Testing.
For Phase II, additional survivors (n=9) were recruited for usability testing of EXCELSHC prototypes. Overall, survivors were positive about the utility of a health-coach to guide cancer survivorship care (77.7%), with few survivors (n=2) reporting they would not participate in this type of program. User testing reported that the symptom-specific information that guided users to targeted educational information (66.7%) and the development of goals and plan (n=44.4%) were the most useful elements of the program.
Phase III: EXCELSHC Prototype Refinement.
Four key concerns were empirically identified from phases I-II that posed challenges to EXCELSHC acceptability among survivors (see Table 2). These concerns were: (1) being too busy and worried about the time commitment; (2) information presented in workbook being too dense; (3) health coaches approach; and, (4) the program not focusing on issues that were too broad. Final EXCELSHC design was responsive to each concern identified (see Table 2) and is currently being tested in an ongoing randomized controlled trial.
DISCUSSION
Health-coaching educational interventions are increasingly used for chronic disease management in primary care. The present study supports mounting evidence that survivors’ desire support that helps them to make sense of new issues that arise post-cancer treatment.[4, 3] Further, this study demonstrates that health-coaching is an acceptable method to provide this support to survivors who have a variety of informational, behavioral, and social concerns. The needs for health-coaching support can vary widely based on initial cancer site, and the literature suggests additional differences exist based on comorbid chronic conditions, life stresses, health literacy, patient preferences and priorities.[15, 11] Therefore, health-coaching may be a nimble strategy to meet wide ranging needs that has had traction in the primary care setting as an educational model for chronic disease management. There may be opportunities to bundle cancer survivorship wellness programs into existing primary care programming to enhance feasibility of health coaching models and increase the perceived value of the time investment among skeptical survivors.
In the present study, cancer survivors across cancer sites reported similar levels of interest (~80%) in utilizing a health coach; however, we found differences in patient-reported supportive care needs. These differences were consistent with the literature on cancer site-specific supportive care needs. Breast cancer survivorship research has identified emotional needs, continuity of care post-treatment, and lifestyle management as salient concerns.[28, 29] Evidence supports the need for personalization based on specific, individual concerns among breast cancer survivors [30] and suggests that the breast cancer population has greater informational needs than longer term cancer survivors’ with other primary cancer sites. [31] Given the dominance of female breast cancer survivors in our sample, it is important to consider the impact of gender on informational and supportive care needs. Research suggests females have greater patient activation and are more likely to seek information and supportive care in cancer survivor and non-cancer populations.[32–35] Additionally, our findings for CRC survivors preferences were consistent with a systematic review of long-term supportive care needs which concluded that diet and nutrition, self-managing symptoms/complications, and providing quality health related information were salient needs.[36] In a recent study, Tagai et al. [37] found on prostate cancer survivors’ overall report high self-efficacy for re-entry (e.g. ability to manage physical, interpersonal and mental health post-treatment) with variation based on social and medical risk factors. Prostate cancer survivors in the present study reported a health coaching focus on supporting accountability and motivation. Across all sites, despite trends toward specific preferences for health coaches, there remained a need to customize and tailor the content based on the real-time concerns of survivors.
We were encouraged by the rates of acceptability and usefulness of health-coaching among cancer survivors across a variety of clinical issues that have considerable evidence base and supported by cancer survivorship guidelines (e.g., emotional support, diet/exercise).[19–21] Health-coaching for long-term cancer survivors may be potentially more beneficial than static documents, like survivorship care plans, typically provided at a specific point in the survivorship trajectory. To optimize health-coaching implementation for cancer survivors in primary care the broader challenges of feasibility and acceptability within the busy primary care landscape need further examination. Since telephone based health-coaching was not acceptable to all cancer survivors in this study, further research may be needed to explore who would find it useful, and if other content, modalities of delivery (e.g., patient portal or app-based), and timing in the cancer trajectory might influence patients perceptions. Key findings from this study may offer valuable insights for educational programs that aim to translate health-coaching models to different platforms. Additionally, cancer survivors’ feedback on the need for information that is streamlined, problem-focused, and includes options to explore when making a plan can inform additional cancer-focused health-coaching programs. Furthermore, if the EXCELSHC intervention is effective in the present randomized controlled trial, this educational model of care delivery can be tailored and disseminated for other cancer sites and additional long-term survivorship issues.
Study Limitations
There are some limitations in the present study to consider. Our sample included mostly breast cancer survivors compared to other cancer sites in the development and user testing phases of the study. We displayed our results based on cancer site despite the smaller samples for colorectal and prostate cancer participants to ensure different trends across different cancer sites were illustrated. Further, acceptability of health-coaching across the different cancer sites will be explored in depth in our evaluation of EXCELSHC in the randomized control trial. As well, though we used an inclusive design and 35% of participants were African American, only 10% and 12% of the sample were in lower income and educational groups, respectively. This limits generalizability of our study results and may necessitate additional tailoring and adaptation of materials and presentation for these groups. Recruitment efforts in our ongoing clinical trial aims to diversify the study sample to evaluate EXCELSHC engagement and utility in these populations.
Conclusion
The potential for health-coaching programs to empower cancer survivors by providing support to guide their follow-up and inform interactions with providers remains understudied. Consequently, much remains unknown about the potential of health-coaching to promote behavior change and adherence of survivorship follow-up guidelines. Studies of health-coaching to promote behavior change and adherence in chronic disease management suggest the effectiveness health-coaching remains promising. [11, 15] Our findings suggest that health-coaching, tailoring information based on time since treatment, age, and cancer type, may be a viable strategy to support the long-term care needs of cancer survivors who face new emerging issues as they transition from acute cancer care.
Footnotes
Publisher's Disclaimer: This Author Accepted Manuscript is a PDF file of a an unedited peer-reviewed manuscript that has been accepted for publication but has not been copyedited or corrected. The official version of record that is published in the journal is kept up to date and so may therefore differ from this version.
Conflict of Interest Statement
The authors declare no conflicts of interest.
Data Availability Statement
The data that support the findings of this study are available on request from the senior author. The data are not publicly available due to privacy or ethical restrictions.
REFERENCES
- 1.Bluethmann SM, Mariotto AB, Rowland JH. Anticipating the “Silver Tsunami”: Prevalence Trajectories and Comorbidity Burden among Older Cancer Survivors in the United States. Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology. 2016;25(7):1029–36. doi: 10.1158/1055-9965.Epi-16-0133. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2.Pachman DR, Barton DL, Swetz KM, Loprinzi CL. Troublesome symptoms in cancer survivors: fatigue, insomnia, neuropathy, and pain. J Clin Oncol. 2012;30(30):3687–96. doi: 10.1200/JCO.2012.41.7238. [DOI] [PubMed] [Google Scholar]
- 3.McCorkle R, Ercolano E, Lazenby M, Schulman-Green D, Schilling LS, Lorig K et al. Self-management: Enabling and empowering patients living with cancer as a chronic illness. CA Cancer J Clin. 2011;61(l):50–62. doi: 10.3322/caac.20093. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.O’Malley DM, Hudson SV, Ohman-Strickland PA, Bator A, Lee HS, Gundersen DA et al. Follow-up Care Education and Information: Identifying Cancer Survivors in Need of More Guidance. Journal of cancer education : the official journal of the American Association for Cancer Education. 2016;31(l):63–9. doi: 10.1007/s13187-014-0775-y. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5.Barlow J, Wright C, Sheasby J, Turner A, Hainsworth J. Self-management approaches for people with chronic conditions: a review. Patient Educ Couns. 2002;48(2):177–87. [DOI] [PubMed] [Google Scholar]
- 6.Hibbard JH, Mahoney ER, Stockard J, Tusler M. Development and testing of a short form of the patient activation measure. Health Serv Res. 2005;40(6 Pt l):1918–30. doi: 10.1111/j.1475-6773.2005.00438.x. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.Lorig KR, Holman H. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med. 2003;26(l):1–7. doi: 10.1207/S15324796ABM2601_01. [DOI] [PubMed] [Google Scholar]
- 8.Boland L, Bennett K, Connolly D. Self-management interventions for cancer survivors: a systematic review. Support Care Cancer. 2018;26(5):1585–95. doi: 10.1007/s00520-017-3999-7. [DOI] [PubMed] [Google Scholar]
- 9.Olsen JM, Nesbitt BJ. Health coaching to improve healthy lifestyle behaviors: an integrative review. American Journal of Health Promotion. 2010;25(1):el–el2. [DOI] [PubMed] [Google Scholar]
- 10.Conn S, Curtain S. Health coaching as a lifestyle medicine process in primary care. Aust J Gen Pract. 2019;48(10):677–80. doi: 10.31128/ajgp-07-19-4984. [DOI] [PubMed] [Google Scholar]
- 11.Barakat S, Boehmer K, Abdelrahim M, Ahn S, Al-Khateeb AA, Villalobos N et al. Does Health Coaching Grow Capacity in Cancer Survivors? A Systematic Review. Popul Health Manag. 2018;21(1):63–81. doi: 10.1089/pop.2017.0040. [DOI] [PubMed] [Google Scholar]
- 12.Djuric Z, Segar M, Orizondo C, Mann J, Faison M, Peddireddy N et al. Delivery of Health Coaching by Medical Assistants in Primary Care. J Am Board Fam Med. 2017;30(3):362–70. doi: 10.3122/jabfm.2017.03.160321. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Hartzler AL, Tuzzio L, Hsu C, Wagner EH. Roles and Functions of Community Health Workers in Primary Care. Ann Fam Med. 2018;16(3):240–5. doi: 10.1370/afm.2208. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 14.Bennett HD, Coleman EA, Parry C, Bodenheimer T, Chen EH. Health coaching for patients with chronic illness. Family practice management. 2010;17(5):24. [PubMed] [Google Scholar]
- 15.Dennis SM, Harris M, Lloyd J, Powell Davies G, Faruqi N, Zwar N. Do people with existing chronic conditions benefit from telephone coaching? A rapid review. Aust Health Rev. 2013;37(3):381–8. doi: 10.1071/ah13005. [DOI] [PubMed] [Google Scholar]
- 16.Coffey L, Mooney O, Dunne S, Sharp L, Timmons A, Desmond D et al. Cancer survivors’ perspectives on adjustment-focused self-management interventions: a qualitative meta-synthesis. J Cancer Surviv. 2016; 10(6): 1012–34. doi: 10.1007/s11764-016-0546-3. [DOI] [PubMed] [Google Scholar]
- 17.Davis SN, O’Malley DM, Bator A, Ohman-Strickland P, Clemow L, Ferrante JM et al. Rationale and design of extended cancer education for longer term survivors (EXCELS): a randomized control trial of ‘high touch’ vs. ‘high tech’ cancer survivorship self-management tools in primary care. BMC Cancer. 2019;19(1):340. doi: 10.1186/s12885-019-5531-6. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18.O’Malley DM, Davis SN, Devine KA, Sullivan B, Bator A, Clemow L et al. Development and usability testing of the e-EXCELS tool to guide cancer survivorship follow-up care. Psycho-oncology. 2020;29(1): 123–31. doi: 10.1002/pon.5222. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 19.Skolarus TA, Wolf AM, Erb NL, Brooks DD, Rivers BM, Underwood W 3rd et al. American Cancer Society prostate cancer survivorship care guidelines. CA Cancer J Clin. 2014;64(4):225–49. doi: 10.3322/caac.21234. [DOI] [PubMed] [Google Scholar]
- 20.El-Shami K, Oeffinger KC, Erb NL, Willis A, Bretsch JK, Pratt-Chapman ML et al. American Cancer Society Colorectal Cancer Survivorship Care Guidelines. CA Cancer J Clin. 2015;65(6):428–55. doi: 10.3322/caac.21286. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21.Runowicz CD, Leach CR, Henry NL, Henry KS, Mackey HT, Cowens-Alvarado RL et al. American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline. CA Cancer J Clin. 2016;66(l):43–73. doi: 10.3322/caac.21319. [DOI] [PubMed] [Google Scholar]
- 22.Miller SM, Diefenbach MA. The cognitive-social health information-processing (C-SHIP) model: A theoretical framework for research in behavioral oncology. Persp Beh M. 1998:219–44. [Google Scholar]
- 23.Venderbos LD, van den Bergh RC, Roobol MJ, Schroder FH, Essink-Bot ML, Bangma CH et al. A longitudinal study on the impact of active surveillance for prostate cancer on anxiety and distress levels. Psycho-oncology. 2015;24(3):348–54. doi: 10.1002/pon.3657. [DOI] [PubMed] [Google Scholar]
- 24.Hutchison AJ, Breckon JD. A review of telephone coaching services for people with long-term conditions. J Telemed Telecare. 2011;17(8):451–8. doi: 10.1258/jtt.2011.110513. [DOI] [PubMed] [Google Scholar]
- 25.Neilsen J Usability Engineering. 1993. New York: Academic Press. [Google Scholar]
- 26.Friese S Qualitative data analysis with ATLAS, ti. SAGE Publications Limited; 2019. [Google Scholar]
- 27.Bradley EH, Curry LA, Devers KJ. Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Serv Res. 2007;42(4):1758–72. doi: 10.1111/j.1475-6773.2006.00684.x. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 28.Cheng KKF, Cheng HL, Wong WH, Koh C. A mixed-methods study to explore the supportive care needs of breast cancer survivors. Psycho-oncology. 2018;27(1):265–71. doi: 10.1002/pon.4503. [DOI] [PubMed] [Google Scholar]
- 29.Hodgkinson K, Butow P, Hunt GE, Pendlebury S, Hobbs KM, Wain G. Breast cancer survivors’ supportive care needs 2-10 years after diagnosis. Support Care Cancer. 2007;15(5):515–23. doi: 10.1007/s00520-006-0170-2. [DOI] [PubMed] [Google Scholar]
- 30.Kwan JYY, Croke J, Panzarella T, Ubhi K, Fyles A, Koch A et al. Personalizing post-treatment cancer care: a cross-sectional survey of the needs and preferences of well survivors of breast cancer. Curr Oncol. 2019;26(2):el38–e46. doi: 10.3747/co.26.4131. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 31.Playdon M, Ferrucci LM, McCorkle R, Stein KD, Cannady R, Sanft T et al. Health information needs and preferences in relation to survivorship care plans of long-term cancer survivors in the American Cancer Society’s Study of Cancer Survivors-I. J Cancer Surviv. 2016;10(4):674–85. doi: 10.1007/s11764-015-0513-4. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 32.O’Malley D, Dewan AA, Ohman-Strickland PA, Gundersen DA, Miller SM, Hudson SV. Determinants of patient activation in a community sample of breast and prostate cancer survivors. Psycho-oncology. 2018;27(1): 132–40. doi: 10.1002/pon.4387. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 33.Hibbard JH, Cunningham PJ. How engaged are consumers in their health and health care, and why does it matter? Res Brief. 2008(8):1–9. [PubMed] [Google Scholar]
- 34.Adjei Boakye E, Mohammed KA, Geneus G, Tobo BB, Wirth LS, Yang L et al. Correlates of health information seeking between adults diagnosed with and without cancer. PLoS One. 2018;13(5):e0196446. doi: 10.1371/journal.pone.0196446. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 35.Davis SN, O’Malley DM, Bator A, Ohman-Strickland P, Hudson SV. Correlates of Information Seeking Behaviors and Experiences Among Adult Cancer Survivors in the USA. J Cancer Educ. 2020. doi: 10.1007/s13187-020-01758-6. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 36.Kotronoulas G, Papadopoulou C, Burns-Cunningham K, Simpson M, Maguire R. A systematic review of the supportive care needs of people living with and beyond cancer of the colon and/or rectum. Eur J Oncol Nurs. 2017;29:60–70. doi: 10.1016/j.ejon.2017.05.004. [DOI] [PubMed] [Google Scholar]
- 37.Tagai EK, Hudson SV, Diefenbach MA, Xu J, Bator A, Marziliano A et al. Social and medical risk factors associated with supportive needs in the first year following localized prostate cancer treatment. Journal of Cancer Survivorship. 2020. doi: 10.1007/s11764-020-00916-5. [DOI] [PMC free article] [PubMed] [Google Scholar]
