J Canc Educ DOI 10.1007/s13187-014-0652-8
Adaptation of the Chronic Disease Self-Management Program for Cancer Survivors: Feasibility, Acceptability, and Lessons for Implementation B. Risendal & A. Dwyer & R. Seidel & K. Lorig & C. Katzenmeyer & L. Coombs & Y. Kellar-Guenther & L. Warren & A. Franco & M. Ory
# Springer Science+Business Media New York 2014
Abstract Self-management in chronic disease has been shown to improve patient-reported and health care-related outcomes. However, relatively little information about its utility in cancer survivorship is known. We evaluated the feasibility and acceptability of the delivery of an adaptation of the evidence-based Chronic Disease Self-management Program (Stanford) called Cancer Thriving and Surviving (CTS). Triangulated mixed methods were used to capture baseline characteristics and post-program experiences using a combination of closed- and open-ended survey items; emergent coding and simple descriptive statistics were used to summarize the data. Twenty-seven workshops were delivered by 22 CTS leaders to 244 participants between August 2011 and B. Risendal (*) : A. Dwyer : Y. Kellar-Guenther Community and Behavioral Health, Colorado School of Public Health, University of Colorado Cancer Center, 13001 E. 17th Street, MS F538, Aurora, CO 80045, USA e-mail: [email protected] R. Seidel Carilion Clinic, Virginia Tech Carilion School of Medicine, Roanoke, VA, USA K. Lorig Department of Medicine, Stanford University, Stanford, CA, USA C. Katzenmeyer Consortium for Older Adult Wellness, Lakewood, CO, USA L. Coombs Colorado Health Outcomes Center, Denver, CO, USA L. Warren : A. Franco University of Colorado Comprehensive Cancer Center, Aurora, CO, USA M. Ory Social and Behavioral Health, Texas A&M Health Science Center, Round Rock, TX, USA
January 2013 in a variety of settings (48 % community, 30 % health care, 22 % regional/community cancer center). Representing a variety of cancer types, about half the participants were 1–3 years post-diagnosis and 45 % were 4 or more years from diagnosis. Program attendance was high with 84 % of participants attending four or more of the six sessions in the workshop. Overall, 95 % of the participants were satisfied with the program content and leaders, and would recommend the program to friends and family. These results confirm the feasibility and acceptability of delivery of a high-fidelity, peerled model for self-management support for cancer survivors. Expansion of the CTS represents a powerful tool toward improving health-related outcomes in this at-risk population. Keywords Self-management . Cancer survivorship . Long-term cancer survivors . Community-based intervention . Chronic illness care
Introduction Self-management in chronic disease has been shown to improve a variety of important outcomes related to patient health, as well as decreased health care utilization and cost [1, 2]. While self-management is a well-recognized component in chronic disease care, relatively little is known about its utility and impact in cancer survivorship. According to the National Cancer Survivorship Initiative and Macmillan Cancer Support (2010), self-management in cancer survivorship refers to, “… the awareness and active participation of the survivor in their recovery and rehabilitation to minimize the consequences of the diagnosis and its treatment, and promote health and well-being.” In the USA, self-management support was highlighted as an important need for survivors in the Institute of Medicine’s (IOM)
J Canc Educ
landmark report, “Cancer Patient to Cancer Survivor: Lost in Transition” [3]. Authors of the IOM report concluded that the care of cancer survivors is fragmented and poorly coordinated, and that self-management support can help promote the delivery of quality care and improved health outcomes in this population. Patient preferences and priorities should guide survivorship care delivery, and support for self-management can aid in decision-making in partnership with providers [4]. Further, research indicates that the cancer diagnosis may serve as a teachable moment and present an opportunity for many survivors to engage in healthy behavior change [5, 6]. Foster et al. [7] suggest that problems after cancer treatment such as lack of information, emotional and social difficulties, and side effects of treatment can be positively impacted through self-management support to promote healthy behaviors and well-being after cancer. Although self-management in survivorship is receiving increasing attention, a recent literature review on this topic suggests that the term is often misused by cancer researchers who often focus on a limited set of outcomes (e.g., coping, healthy lifestyle, or depression; [8]). Rather, self-management is comprehensive engagement of the patient in problem solving, decision making, and daily health-related behaviors in partnership with their health care provider and community [9]. Self-management support in cancer survivorship, for example, can help survivors to understand what to expect after treatment, better understand follow-up care, and utilize information technology to interact efficiently with the health care system [10]. The Chronic Disease Self-Management Program (CDSMP) is one of the few evidence-based interventions for comprehensive self-management support [11]. Developed by researchers from the Stanford Patient Education Research Center at Stanford University, the program entails a series of six weekly small-group workshops given in community settings and, more recently, via the Internet. The workshops are facilitated by two peer leaders who are extensively trained through the Center’s dissemination model (certified Master Trainers who can then train leaders in their community to ensure fidelity in delivery). The CDSMP is based on social cognitive theory and uses highly interactive group activities as a format to focus on building skills, sharing experiences, and support among the participants to maximize engagement. While there are now specialized versions for some chronic conditions such as diabetes, chronic pain, HIV/AIDS, and arthritis (http://patienteducation.stanford. edu/programs/cdsmp.html), there has never been a largescale evaluation of the CDSMP for cancer survivors. The purpose of this paper is to (1) describe both the adaptation and implementation of the CDSMP for cancer survivors, and (2) evaluate the feasibility and acceptability of the delivery of the adapted version (Cancer Thriving and Surviving or CTS) to cancer survivors.
Methods Intervention Adaptation The Cancer Thriving and Surviving Program (CTS) evaluated in the current report was initially developed by the Macmillan Cancer Support in the UK, and subsequently modified at the Stanford Patient Education Research Center to incorporate language more common to the US Adaptations to the CDSMP content for the CTS were guided by the previously cited work by Foster et al. [7] and the subsequent conceptual model [12]. More specifically, the program was adapted to include restoration of self-confidence, adjustment to changed self, and confidence to self-manage cancer-related problems to promote successful coping and recovery of well-being following a cancer diagnosis. An early version of this program was delivered in a small demonstration project at Carilion Clinic in Virginia in 2009–2010. Intervention Delivery Researchers at the Colorado School of Public Health (CSPH) partnered with the Consortium for Older Adult Wellness (COAW) to deliver CTS (the modified CDSMP). COAW is a community-based agency with statewide license to deliver the evidence-based CDSMP. Individuals who were already certified to provide the CDSMP training and who were also cancer survivors completed a 2-day cross-training program led by the Stanford Patient Education Center using a facilitator guide drafted by the instructors to ensure fidelity to the model and content, similar to the CDSMP (http://patienteducation.stanford.edu/training). The National Coalition of Cancer Survivors (NCCS’s) widely accepted definition of survivorship was used to identify leaders (and participants) for this project, describing survivors as “all persons touched by cancer, from the time of diagnosis and for the balance of life” (www.canceradvocacy. org/about-us/our-mission/). This definition includes those diagnosed and their caregivers, friends, and family. Recruitment In keeping with best practices in participant recruitment [13], outreach to management at community cancer centers and hospital-based cancer programs by CSPH researchers and leadership at COAW was conducted to provide information about the project, gain buy-in, and obtain permission to conduct recruitment at these key organizations in the 5 months preceding program delivery and again at the study mid-point to boost awareness. The reach of the community partner organization (COAW) is state-wide; therefore, we were able to approach institutions and agencies all along Colorado’s “Front Range” corridor, where over two-thirds of the state’s population resides. Participants were approached in a variety of outreach methods including interactions with cancer center staff and brochures left at medical offices, mailed to homes using mailing lists from local cancer survivor programs, and distributed at cancer survivor local events. A widely recognized local TV personality who
J Canc Educ
is a champion for cancer prevention activities in the state also played an important role in our recruitment by running two stories about the program which include interviews with survivors and researchers. Potential respondents identified from these routes were contacted by COAW personnel to assess interest and eligibility for participation in the program. Participants were allocated to early or lagged intervention groups for the analytic evaluation (results not included in this paper). Since the purpose of this paper is to explore factors in the implementation of an adapted chronic disease self-management program, this paper includes persons who participated in the CTS workshops, regardless of group assignment for the outcomes study. Inclusion in the program required participants to be over the age of 21 and diagnosed with cancer that required radiation, surgical, or adjuvant chemotherapy treatment, but not be in active treatment at the time of enrollment. Persons currently receiving maintenance therapies for cancer delivered after completion of primary treatment (such as anti-hormonal treatments) were eligible. Support persons/caregivers of the above were also allowed to attend. All persons had to speak and read/write in English, and also agree to attend inperson classes and arrange transportation to attend classes. All classes were located in close proximity to public transportation; participants who indicated transportation was a barrier were given extra help to identify bus and light rail routes, and carpools were also facilitated by the recruiter. Persons in end-of-life care or currently undergoing active treatment for cancer were excluded. Approval to conduct the research was obtained by the Colorado Multiple Institutional Review Board and participants provided signed informed consent. Data Collection Triangulated mixed methods [14] were used to capture implementation, process, and impact data (e.g., satisfaction with course content and group process; information seeking, coping, and social support) from participants and group leaders. Participation and completion rates were collected by group leaders, recorded weekly, verified by the program coordinator, and entered into a project database. Written self-administered surveys were collected from participants at baseline, post-program (6 weeks), and final followup measure (6 months after program completion). Data in this paper reflect baseline and post-program data only. Participants were asked at baseline to self-report demographic characteristics (age, gender, marital status, race/ethnicity) as well as cancer-related history (caregiver, time since diagnosis, type of cancer, comorbid conditions). Participants were asked about satisfaction with course content, leaders, and group process on a four-point scale (very, somewhat, a little, not at all). Participants were also asked to respond specifically to the three new modules on decisionmaking, coping, and complementary and alternative
medicine (CAM) by indicating whether the new material was too long or too short, just right, and if it was (or was not) valuable. Participants were asked to indicate whether or not they would recommend the CTS to friends or family (yes/no). Impact evaluation data was collected from participants (survivors and caregivers) and leaders. Among participants, data from open-ended questions were collected in writing by self-report upon completion of the course (post-program measure at 6 weeks). The questions were designed to capture additional program process and impact data not collected in the evaluation surveys. Participants were asked to respond to the following three questions: “After the CTS classes, did you continue to stay in contact with any of your fellow participants? After the CTS classes, did you seek and find additional support groups, cancer services, or information that you found to be helpful? Since completing the CTS class, do you feel you are managing your health and life differently?” If participants answered yes, they were asked to provide more information in an open-ended response. Participants were also offered the opportunity to write about anything else not covered in the evaluation survey in a single open-ended item at the end of the survey. Additionally, informal debriefings (one at mid-point and one at completion of delivery) were conducted with group leaders to collect process evaluation data in order to improve our understanding of how the program was working and factors related to delivery. Leaders were asked to give feedback in the following areas using an interview guide to standardize the open-ended questions: content (missing content, utility, acceptability), group process with new activities (feedback, flow, utility, problems or concerns), recommended leader qualities (background, experience with cancer, previous delivery of CDSMP, age gender), adequacy of preparation (new CTS leader training), and characteristics of target population (differences observed by type or time since diagnosis, perceived participant interest, role of caregivers). Analysis (a) Quantitative—Simple descriptive statistics including proportions for categorical factors and means with standard deviations for continuous factors were calculated. (b) Qualitative—Open-ended responses from 113 of the 191 participants were coded near the mid-point of the study to assess whether or not any changes to the survey were needed. Responses were analyzed using emergent coding using to identify themes that were confirmed by a second coder [15]. Themes were ascertained from the literature [16, 17] as well as what evolved from the data. The data from each question were analyzed separately utilizing Microsoft Excel to also record the number of times themes occurred in order to
J Canc Educ
weight responses. The coders were independent of the project and reported back to the lead investigators what was found.
workshop. When we examined classes with the smallest proportion of participants completing five or six sessions (i.e., highest dropout rates), the workshops settings were equally split between community and health care. Workshops were ultimately delivered by over 80 % of the leaders who were trained; 70 % of workshops had seven attendees or more (see also Table 1).
Results Adaptation Adaptations made to the CDSMP intervention to ensure relevancy to the target population of cancer survivors are shown in Fig. 1a, b. The new content was added as shown with solid lines and includes the following: prioritizing and asking for help, sleep, living with uncertainty, decisionmaking, cancer and changes to your body, and cancer and relationships. Modifications to the existing CDSMP modules are shown with the dotted lines (symptom management, treatment decisions, healthy eating, making decisions). Training, Infrastructure, and Implementation COAW’s extensive network of over 300 certified group leaders throughout Colorado enabled us to rapidly identify potential CTS Workshop leaders, yielding a total of 27 leaders who were also cancer survivors (3 men and 24 women). Three of these leaders were survivors (one female, two males) and the remaining leaders were caregivers. Eleven of the leaders were under the age of 50 years, 4 were over the age of 65, and the remaining 12 leaders were between the ages of 50 and 64 years. Sixteen of these leaders were co-trained in January 2011 with an additional 11 leaders from Colorado trained at a follow-up training at the study mid-point to boost the availability of workshops (May 2012). Three workshops were cancelled due to small class size but later rescheduled; one class was cancelled due to logistical issues and availability of leaders; and three additional workshops were cancelled due to heavy snow and icy driving conditions. All these participants were enrolled in subsequent workshops. Three workshops, all in the health care setting, were permanently cancelled due to lack of participation. The leaders for these classes were located in the rural, eastern plains area of Colorado in areas of low population density. These leaders were trained relatively late in the study, and not enough participants to hold a workshop could be recruited in the remaining accrual time. Twenty-seven workshops (i.e., series of six sessions) were delivered by 22 CTS leaders to 244 participants between August 2011 and January 2013. Delivery and implementation data are shown in Table 1. The average number of participants in each workshop was 8.2±2.7; nearly half the workshops had 7 to 9 participants (48.2 %) with the remainder of workshops approximately evenly split between 5 and 6 (29.6 %) or 10 and greater participants (22.2 %). The majority of participants (84 %) completed four or more sessions in each
Post-program Evaluation—Quantitative Post-program surveys were completed by 191 of the 244 participants (78.2 %), and characteristics of these respondents are shown in Table 2. About half the participants were between the ages of 50 and 64 years (47.1 %); 35 % were age 65 and over and 17.8 % were under age 50; 14.1 % were caregivers/support persons. The race and ethnicity of the group was predominantly White (88 %) but nearly 8 % of participants selfreporting Hispanic ethnicity. The proportion of women was about three times that of men (23 vs. 77 %, respectively). Persons with a variety of employment and insurance types also enrolled. Characteristics of the 191 respondents with post-program surveys were similar to that of the 244 with baseline data (data not shown). Results of quantitative post-program evaluation are shown in Figs. 2 and 3. Satisfaction with content, leaders, and group process were all high, with 65–81 % indicating they were very satisfied and an additional 16–24 % indicating they were somewhat satisfied. Less than 5 % of people indicated they were only a little satisfied (Fig. 2). Responses to the new content were similarly positive, with less than 5 % indicating that it was not useful. The majority of participants indicated that the content on coping and decision-making was appropriate in length (80–90 %, respectively). In contrast, 25 % of participants indicated the section on CAM was too short, suggesting that additional information and resources may be needed on this topic by survivors. When asked whether or not they would recommend the program to friends and family, 95 % responded positively. Responses to the CTS were similarly high regardless of cancer survivor status (diagnosed vs. caregiver); therefore, we show only combined satisfaction data. Further, participant satisfaction was similar regardless of group assignment, and data were therefore combined in the analyses. Post-program Evaluation—Qualitative Open-ended responses indicated four themes: course quality, course facilitation, course logistics, and group composition. Participants were asked to respond in a post-program survey to the following three questions and, if yes, were asked to provide more information in an open-ended response: “After the CTS classes, did you continue to stay in contact with any of your fellow participants?” (Yes=59/113; 52.2 %); “After the CTS classes, did you seek and find additional support groups, cancer services, or information that you found to be helpful?” (Yes=45/
J Canc Educ Fig. 1 a, b Adaptations to the Chronic Disease SelfManagement Program for cancer survivors
110; 65.0 %); “Since completing the CTS class, do you feel you are managing your health and life differently?” (Yes=76/ 100’ 69.1 %). These yes responses were followed with openended responses which were grouped into two themes: course quality (including course facilitation and course logistics) and group characteristics. The high quality of the program was noted by 49 respondents (61 times). For example, one participant indicated, “The program is excellent. I especially liked the actions plans each week to put the lesson learned into practice. Having this focus
on cancer acknowledges the impact and brings knowledge and hope to the journey of survivorship.” Some participants (n=22) indicated suggestions for new content including: more on coping of cancer-specific issues (fatigue, fear of recurrence) and more cancer-specific materials and resources (nutrition, coping with late and long-term side effects of treatment especially chemotherapy and cognition). One participant said, “Great class and tools! I hope you can develop these tools be more cancer-specific.” Comments about the high quality of the facilitation were mentioned by 27 respondents. Illustrative
J Canc Educ Table 1 Delivery and implementation of the Cancer Thriving and Surviving Program Delivery and implementation factor
Value (n)
Setting Regional/community cancer center Hospital or health care system Community agenciesa
22.0 % (6) 30.0 % (8) 48.0 % (13)
Number Workshops Delivered/Leader 0 1 2 3+ Number enrolled participantsb/workshop 5–6 7–9 10+ Number sessions/participantb ≤3 4 5 6
18.5 14.8 14.8 51.9
Table 2 Characteristics of participants—Cancer Thriving and Surviving Program (n=191)
% (5) % (4) % (4) % (14)
% (38) % (33) % (75) % (98)
a
Includes libraries, faith-based organizations, recreation centers, and community agencies
b
n=244 enrollees who attended at least one class
quotes included: “Great and capable leaders.” “Leaders did a great job of keeping on topic and keeping people from dominating conversations.” There were only six negative comments about the group leaders. A few group characteristics emerged from the participants as being factors that influenced their experience with the CTS Program. Many of those who were earlier in their survivorship appreciated the input from longer-term survivors; for example, one person indicated, “I think having longer term survivors… as well as those still undergoing treatment was very helpful and future classes would benefit by planning for such diversity. Attendees hung on their every word….Caregivers attendance was more beneficial than I had anticipated-both to me, as a care giver, and to others, I think.” The inclusion of caregivers was noted by several, with one participant stating, “Having caregivers added a new fresh perspective to dealing with my chronic conditions. Being with many of my peers also gave me expanding views of how to deal with my conditions”. The caregivers themselves also offered they had learned new things of value. “All I can say thank you so much. I have really enjoyed this class, knowing that my son has people who he could relate to. I learned (chemo brain) was not just something my son just made up. Thank you so much”. The majority of longer term survivors indicated the CTS workshop was valuable because of being able to share their experiences. In contrast, one participant said, “Being a nine-
Value, (n)
Age, mean ± SD
Adaptation of the Chronic Disease Self-Management Program for Cancer Survivors: Feasibility, Acceptability, and Lessons for Implementation B. Risendal & A. Dwyer & R. Seidel & K. Lorig & C. Katzenmeyer & L. Coombs & Y. Kellar-Guenther & L. Warren & A. Franco & M. Ory
# Springer Science+Business Media New York 2014
Abstract Self-management in chronic disease has been shown to improve patient-reported and health care-related outcomes. However, relatively little information about its utility in cancer survivorship is known. We evaluated the feasibility and acceptability of the delivery of an adaptation of the evidence-based Chronic Disease Self-management Program (Stanford) called Cancer Thriving and Surviving (CTS). Triangulated mixed methods were used to capture baseline characteristics and post-program experiences using a combination of closed- and open-ended survey items; emergent coding and simple descriptive statistics were used to summarize the data. Twenty-seven workshops were delivered by 22 CTS leaders to 244 participants between August 2011 and B. Risendal (*) : A. Dwyer : Y. Kellar-Guenther Community and Behavioral Health, Colorado School of Public Health, University of Colorado Cancer Center, 13001 E. 17th Street, MS F538, Aurora, CO 80045, USA e-mail: [email protected] R. Seidel Carilion Clinic, Virginia Tech Carilion School of Medicine, Roanoke, VA, USA K. Lorig Department of Medicine, Stanford University, Stanford, CA, USA C. Katzenmeyer Consortium for Older Adult Wellness, Lakewood, CO, USA L. Coombs Colorado Health Outcomes Center, Denver, CO, USA L. Warren : A. Franco University of Colorado Comprehensive Cancer Center, Aurora, CO, USA M. Ory Social and Behavioral Health, Texas A&M Health Science Center, Round Rock, TX, USA
January 2013 in a variety of settings (48 % community, 30 % health care, 22 % regional/community cancer center). Representing a variety of cancer types, about half the participants were 1–3 years post-diagnosis and 45 % were 4 or more years from diagnosis. Program attendance was high with 84 % of participants attending four or more of the six sessions in the workshop. Overall, 95 % of the participants were satisfied with the program content and leaders, and would recommend the program to friends and family. These results confirm the feasibility and acceptability of delivery of a high-fidelity, peerled model for self-management support for cancer survivors. Expansion of the CTS represents a powerful tool toward improving health-related outcomes in this at-risk population. Keywords Self-management . Cancer survivorship . Long-term cancer survivors . Community-based intervention . Chronic illness care
Introduction Self-management in chronic disease has been shown to improve a variety of important outcomes related to patient health, as well as decreased health care utilization and cost [1, 2]. While self-management is a well-recognized component in chronic disease care, relatively little is known about its utility and impact in cancer survivorship. According to the National Cancer Survivorship Initiative and Macmillan Cancer Support (2010), self-management in cancer survivorship refers to, “… the awareness and active participation of the survivor in their recovery and rehabilitation to minimize the consequences of the diagnosis and its treatment, and promote health and well-being.” In the USA, self-management support was highlighted as an important need for survivors in the Institute of Medicine’s (IOM)
J Canc Educ
landmark report, “Cancer Patient to Cancer Survivor: Lost in Transition” [3]. Authors of the IOM report concluded that the care of cancer survivors is fragmented and poorly coordinated, and that self-management support can help promote the delivery of quality care and improved health outcomes in this population. Patient preferences and priorities should guide survivorship care delivery, and support for self-management can aid in decision-making in partnership with providers [4]. Further, research indicates that the cancer diagnosis may serve as a teachable moment and present an opportunity for many survivors to engage in healthy behavior change [5, 6]. Foster et al. [7] suggest that problems after cancer treatment such as lack of information, emotional and social difficulties, and side effects of treatment can be positively impacted through self-management support to promote healthy behaviors and well-being after cancer. Although self-management in survivorship is receiving increasing attention, a recent literature review on this topic suggests that the term is often misused by cancer researchers who often focus on a limited set of outcomes (e.g., coping, healthy lifestyle, or depression; [8]). Rather, self-management is comprehensive engagement of the patient in problem solving, decision making, and daily health-related behaviors in partnership with their health care provider and community [9]. Self-management support in cancer survivorship, for example, can help survivors to understand what to expect after treatment, better understand follow-up care, and utilize information technology to interact efficiently with the health care system [10]. The Chronic Disease Self-Management Program (CDSMP) is one of the few evidence-based interventions for comprehensive self-management support [11]. Developed by researchers from the Stanford Patient Education Research Center at Stanford University, the program entails a series of six weekly small-group workshops given in community settings and, more recently, via the Internet. The workshops are facilitated by two peer leaders who are extensively trained through the Center’s dissemination model (certified Master Trainers who can then train leaders in their community to ensure fidelity in delivery). The CDSMP is based on social cognitive theory and uses highly interactive group activities as a format to focus on building skills, sharing experiences, and support among the participants to maximize engagement. While there are now specialized versions for some chronic conditions such as diabetes, chronic pain, HIV/AIDS, and arthritis (http://patienteducation.stanford. edu/programs/cdsmp.html), there has never been a largescale evaluation of the CDSMP for cancer survivors. The purpose of this paper is to (1) describe both the adaptation and implementation of the CDSMP for cancer survivors, and (2) evaluate the feasibility and acceptability of the delivery of the adapted version (Cancer Thriving and Surviving or CTS) to cancer survivors.
Methods Intervention Adaptation The Cancer Thriving and Surviving Program (CTS) evaluated in the current report was initially developed by the Macmillan Cancer Support in the UK, and subsequently modified at the Stanford Patient Education Research Center to incorporate language more common to the US Adaptations to the CDSMP content for the CTS were guided by the previously cited work by Foster et al. [7] and the subsequent conceptual model [12]. More specifically, the program was adapted to include restoration of self-confidence, adjustment to changed self, and confidence to self-manage cancer-related problems to promote successful coping and recovery of well-being following a cancer diagnosis. An early version of this program was delivered in a small demonstration project at Carilion Clinic in Virginia in 2009–2010. Intervention Delivery Researchers at the Colorado School of Public Health (CSPH) partnered with the Consortium for Older Adult Wellness (COAW) to deliver CTS (the modified CDSMP). COAW is a community-based agency with statewide license to deliver the evidence-based CDSMP. Individuals who were already certified to provide the CDSMP training and who were also cancer survivors completed a 2-day cross-training program led by the Stanford Patient Education Center using a facilitator guide drafted by the instructors to ensure fidelity to the model and content, similar to the CDSMP (http://patienteducation.stanford.edu/training). The National Coalition of Cancer Survivors (NCCS’s) widely accepted definition of survivorship was used to identify leaders (and participants) for this project, describing survivors as “all persons touched by cancer, from the time of diagnosis and for the balance of life” (www.canceradvocacy. org/about-us/our-mission/). This definition includes those diagnosed and their caregivers, friends, and family. Recruitment In keeping with best practices in participant recruitment [13], outreach to management at community cancer centers and hospital-based cancer programs by CSPH researchers and leadership at COAW was conducted to provide information about the project, gain buy-in, and obtain permission to conduct recruitment at these key organizations in the 5 months preceding program delivery and again at the study mid-point to boost awareness. The reach of the community partner organization (COAW) is state-wide; therefore, we were able to approach institutions and agencies all along Colorado’s “Front Range” corridor, where over two-thirds of the state’s population resides. Participants were approached in a variety of outreach methods including interactions with cancer center staff and brochures left at medical offices, mailed to homes using mailing lists from local cancer survivor programs, and distributed at cancer survivor local events. A widely recognized local TV personality who
J Canc Educ
is a champion for cancer prevention activities in the state also played an important role in our recruitment by running two stories about the program which include interviews with survivors and researchers. Potential respondents identified from these routes were contacted by COAW personnel to assess interest and eligibility for participation in the program. Participants were allocated to early or lagged intervention groups for the analytic evaluation (results not included in this paper). Since the purpose of this paper is to explore factors in the implementation of an adapted chronic disease self-management program, this paper includes persons who participated in the CTS workshops, regardless of group assignment for the outcomes study. Inclusion in the program required participants to be over the age of 21 and diagnosed with cancer that required radiation, surgical, or adjuvant chemotherapy treatment, but not be in active treatment at the time of enrollment. Persons currently receiving maintenance therapies for cancer delivered after completion of primary treatment (such as anti-hormonal treatments) were eligible. Support persons/caregivers of the above were also allowed to attend. All persons had to speak and read/write in English, and also agree to attend inperson classes and arrange transportation to attend classes. All classes were located in close proximity to public transportation; participants who indicated transportation was a barrier were given extra help to identify bus and light rail routes, and carpools were also facilitated by the recruiter. Persons in end-of-life care or currently undergoing active treatment for cancer were excluded. Approval to conduct the research was obtained by the Colorado Multiple Institutional Review Board and participants provided signed informed consent. Data Collection Triangulated mixed methods [14] were used to capture implementation, process, and impact data (e.g., satisfaction with course content and group process; information seeking, coping, and social support) from participants and group leaders. Participation and completion rates were collected by group leaders, recorded weekly, verified by the program coordinator, and entered into a project database. Written self-administered surveys were collected from participants at baseline, post-program (6 weeks), and final followup measure (6 months after program completion). Data in this paper reflect baseline and post-program data only. Participants were asked at baseline to self-report demographic characteristics (age, gender, marital status, race/ethnicity) as well as cancer-related history (caregiver, time since diagnosis, type of cancer, comorbid conditions). Participants were asked about satisfaction with course content, leaders, and group process on a four-point scale (very, somewhat, a little, not at all). Participants were also asked to respond specifically to the three new modules on decisionmaking, coping, and complementary and alternative
medicine (CAM) by indicating whether the new material was too long or too short, just right, and if it was (or was not) valuable. Participants were asked to indicate whether or not they would recommend the CTS to friends or family (yes/no). Impact evaluation data was collected from participants (survivors and caregivers) and leaders. Among participants, data from open-ended questions were collected in writing by self-report upon completion of the course (post-program measure at 6 weeks). The questions were designed to capture additional program process and impact data not collected in the evaluation surveys. Participants were asked to respond to the following three questions: “After the CTS classes, did you continue to stay in contact with any of your fellow participants? After the CTS classes, did you seek and find additional support groups, cancer services, or information that you found to be helpful? Since completing the CTS class, do you feel you are managing your health and life differently?” If participants answered yes, they were asked to provide more information in an open-ended response. Participants were also offered the opportunity to write about anything else not covered in the evaluation survey in a single open-ended item at the end of the survey. Additionally, informal debriefings (one at mid-point and one at completion of delivery) were conducted with group leaders to collect process evaluation data in order to improve our understanding of how the program was working and factors related to delivery. Leaders were asked to give feedback in the following areas using an interview guide to standardize the open-ended questions: content (missing content, utility, acceptability), group process with new activities (feedback, flow, utility, problems or concerns), recommended leader qualities (background, experience with cancer, previous delivery of CDSMP, age gender), adequacy of preparation (new CTS leader training), and characteristics of target population (differences observed by type or time since diagnosis, perceived participant interest, role of caregivers). Analysis (a) Quantitative—Simple descriptive statistics including proportions for categorical factors and means with standard deviations for continuous factors were calculated. (b) Qualitative—Open-ended responses from 113 of the 191 participants were coded near the mid-point of the study to assess whether or not any changes to the survey were needed. Responses were analyzed using emergent coding using to identify themes that were confirmed by a second coder [15]. Themes were ascertained from the literature [16, 17] as well as what evolved from the data. The data from each question were analyzed separately utilizing Microsoft Excel to also record the number of times themes occurred in order to
J Canc Educ
weight responses. The coders were independent of the project and reported back to the lead investigators what was found.
workshop. When we examined classes with the smallest proportion of participants completing five or six sessions (i.e., highest dropout rates), the workshops settings were equally split between community and health care. Workshops were ultimately delivered by over 80 % of the leaders who were trained; 70 % of workshops had seven attendees or more (see also Table 1).
Results Adaptation Adaptations made to the CDSMP intervention to ensure relevancy to the target population of cancer survivors are shown in Fig. 1a, b. The new content was added as shown with solid lines and includes the following: prioritizing and asking for help, sleep, living with uncertainty, decisionmaking, cancer and changes to your body, and cancer and relationships. Modifications to the existing CDSMP modules are shown with the dotted lines (symptom management, treatment decisions, healthy eating, making decisions). Training, Infrastructure, and Implementation COAW’s extensive network of over 300 certified group leaders throughout Colorado enabled us to rapidly identify potential CTS Workshop leaders, yielding a total of 27 leaders who were also cancer survivors (3 men and 24 women). Three of these leaders were survivors (one female, two males) and the remaining leaders were caregivers. Eleven of the leaders were under the age of 50 years, 4 were over the age of 65, and the remaining 12 leaders were between the ages of 50 and 64 years. Sixteen of these leaders were co-trained in January 2011 with an additional 11 leaders from Colorado trained at a follow-up training at the study mid-point to boost the availability of workshops (May 2012). Three workshops were cancelled due to small class size but later rescheduled; one class was cancelled due to logistical issues and availability of leaders; and three additional workshops were cancelled due to heavy snow and icy driving conditions. All these participants were enrolled in subsequent workshops. Three workshops, all in the health care setting, were permanently cancelled due to lack of participation. The leaders for these classes were located in the rural, eastern plains area of Colorado in areas of low population density. These leaders were trained relatively late in the study, and not enough participants to hold a workshop could be recruited in the remaining accrual time. Twenty-seven workshops (i.e., series of six sessions) were delivered by 22 CTS leaders to 244 participants between August 2011 and January 2013. Delivery and implementation data are shown in Table 1. The average number of participants in each workshop was 8.2±2.7; nearly half the workshops had 7 to 9 participants (48.2 %) with the remainder of workshops approximately evenly split between 5 and 6 (29.6 %) or 10 and greater participants (22.2 %). The majority of participants (84 %) completed four or more sessions in each
Post-program Evaluation—Quantitative Post-program surveys were completed by 191 of the 244 participants (78.2 %), and characteristics of these respondents are shown in Table 2. About half the participants were between the ages of 50 and 64 years (47.1 %); 35 % were age 65 and over and 17.8 % were under age 50; 14.1 % were caregivers/support persons. The race and ethnicity of the group was predominantly White (88 %) but nearly 8 % of participants selfreporting Hispanic ethnicity. The proportion of women was about three times that of men (23 vs. 77 %, respectively). Persons with a variety of employment and insurance types also enrolled. Characteristics of the 191 respondents with post-program surveys were similar to that of the 244 with baseline data (data not shown). Results of quantitative post-program evaluation are shown in Figs. 2 and 3. Satisfaction with content, leaders, and group process were all high, with 65–81 % indicating they were very satisfied and an additional 16–24 % indicating they were somewhat satisfied. Less than 5 % of people indicated they were only a little satisfied (Fig. 2). Responses to the new content were similarly positive, with less than 5 % indicating that it was not useful. The majority of participants indicated that the content on coping and decision-making was appropriate in length (80–90 %, respectively). In contrast, 25 % of participants indicated the section on CAM was too short, suggesting that additional information and resources may be needed on this topic by survivors. When asked whether or not they would recommend the program to friends and family, 95 % responded positively. Responses to the CTS were similarly high regardless of cancer survivor status (diagnosed vs. caregiver); therefore, we show only combined satisfaction data. Further, participant satisfaction was similar regardless of group assignment, and data were therefore combined in the analyses. Post-program Evaluation—Qualitative Open-ended responses indicated four themes: course quality, course facilitation, course logistics, and group composition. Participants were asked to respond in a post-program survey to the following three questions and, if yes, were asked to provide more information in an open-ended response: “After the CTS classes, did you continue to stay in contact with any of your fellow participants?” (Yes=59/113; 52.2 %); “After the CTS classes, did you seek and find additional support groups, cancer services, or information that you found to be helpful?” (Yes=45/
J Canc Educ Fig. 1 a, b Adaptations to the Chronic Disease SelfManagement Program for cancer survivors
110; 65.0 %); “Since completing the CTS class, do you feel you are managing your health and life differently?” (Yes=76/ 100’ 69.1 %). These yes responses were followed with openended responses which were grouped into two themes: course quality (including course facilitation and course logistics) and group characteristics. The high quality of the program was noted by 49 respondents (61 times). For example, one participant indicated, “The program is excellent. I especially liked the actions plans each week to put the lesson learned into practice. Having this focus
on cancer acknowledges the impact and brings knowledge and hope to the journey of survivorship.” Some participants (n=22) indicated suggestions for new content including: more on coping of cancer-specific issues (fatigue, fear of recurrence) and more cancer-specific materials and resources (nutrition, coping with late and long-term side effects of treatment especially chemotherapy and cognition). One participant said, “Great class and tools! I hope you can develop these tools be more cancer-specific.” Comments about the high quality of the facilitation were mentioned by 27 respondents. Illustrative
J Canc Educ Table 1 Delivery and implementation of the Cancer Thriving and Surviving Program Delivery and implementation factor
Value (n)
Setting Regional/community cancer center Hospital or health care system Community agenciesa
22.0 % (6) 30.0 % (8) 48.0 % (13)
Number Workshops Delivered/Leader 0 1 2 3+ Number enrolled participantsb/workshop 5–6 7–9 10+ Number sessions/participantb ≤3 4 5 6
18.5 14.8 14.8 51.9
Table 2 Characteristics of participants—Cancer Thriving and Surviving Program (n=191)
% (5) % (4) % (4) % (14)
% (38) % (33) % (75) % (98)
a
Includes libraries, faith-based organizations, recreation centers, and community agencies
b
n=244 enrollees who attended at least one class
quotes included: “Great and capable leaders.” “Leaders did a great job of keeping on topic and keeping people from dominating conversations.” There were only six negative comments about the group leaders. A few group characteristics emerged from the participants as being factors that influenced their experience with the CTS Program. Many of those who were earlier in their survivorship appreciated the input from longer-term survivors; for example, one person indicated, “I think having longer term survivors… as well as those still undergoing treatment was very helpful and future classes would benefit by planning for such diversity. Attendees hung on their every word….Caregivers attendance was more beneficial than I had anticipated-both to me, as a care giver, and to others, I think.” The inclusion of caregivers was noted by several, with one participant stating, “Having caregivers added a new fresh perspective to dealing with my chronic conditions. Being with many of my peers also gave me expanding views of how to deal with my conditions”. The caregivers themselves also offered they had learned new things of value. “All I can say thank you so much. I have really enjoyed this class, knowing that my son has people who he could relate to. I learned (chemo brain) was not just something my son just made up. Thank you so much”. The majority of longer term survivors indicated the CTS workshop was valuable because of being able to share their experiences. In contrast, one participant said, “Being a nine-
Value, (n)
Age, mean ± SD
