The Audacity of Engagement: Hearing Directly from Young Adults with Cancer on Their Attitudes and Perceptions of Cancer Survivorship and Cancer Survivorship Research

Abstract

Background:

Young adult (YA) cancer survivors have been historically under-represented in cancer survivorship research, which has contributed to more disparate health outcomes compared with young and older cancer survivors. Using qualitative methods, this study explored YAs' perceptions of cancer survivorship and identified YA-specific barriers and preferences for participation in cancer survivorship research.

Methods:

Individual interviews and focus groups were conducted with YA cancer survivors (N = 19) attending a patient-focused oncology conference. Grounded theory methodology guided analyses by using an inductive data-driven approach to thematic content analysis.

Results:

Participants averaged 33 years old (standard deviation [SD] = 5.5), were 10 years postdiagnosis (SD = 2.3), and were primarily female (79%). Key cancer survivorship topics included adjusting to a “new normal,” staying connected with cancer peers, and dealing with post-treatment medical care. Perceptions of YA survivorship research were mixed. YAs appreciated and were optimistic about the potential for benefit from research. Specific barriers for participation included perceptions of research being inaccessible, overwhelming, and frustrating; participation as inconvenient and burdensome; and researchers being viewed with skepticism and mistrust. They recommended: (1) making age-appropriate, patient-focused changes (e.g., language and design of study materials); (2) increasing participants' control, flexibility, and convenience of procedures; and (3) creating a back-and-forth dialogue between YAs and researchers.

Conclusion:

We assessed YA survivors' perceptions of YA cancer survivorship and research. Communication strategies are needed to address negative perceptions and perceived barriers to research participation. This includes tailoring of dissemination efforts and developmentally targeted implementation of YA priorities into the research process. Age-specific, patient-focused research practices may foster trust within the YA cancer survivor community and improve research participation.

Young adult (YA) cancer survivors (15–39 years old) are a clinically at-risk patient population that has seen less improvement in survival rates compared with pediatric and older adult populations.¹ Despite long-term quality-of-life challenges, including physical, psychosocial, and financial difficulties, YA survivors have limited access to age-appropriate informational and supportive care resources.^2–4 The National Cancer Institute (NCI) identified YA-specific research as a priority,⁵ and “cancer survivorship research” can lead to improvements in clinical care and patient outcomes. However, barriers to conducting YA cancer research have resulted in knowledge gaps and unmet needs.⁶ The “invisibility” and nonparticipation of YAs in research is a primary factor contributing to comparatively worse outcomes.⁷

“Cancer survivorship research” seeks to better understand and address the entire spectrum of physical, psychosocial, and economic changes that are associated with cancer.^8,9 This research is vital to the development of targeted approaches to prevent and manage secondary health problems, delivery of evidence-based patient-centered support, and coordination of multidisciplinary systems of care and policy. Greater patient involvement in determining research practices, clinical care, and health policy is increasingly recognized as important in determining standard practices and outcomes.^10–12 A deliberate effort to understand and utilize YAs' perspectives is necessary to guide research that will lead to meaningful improvements in clinical care and patient outcomes.⁷ However, participation rates remain low (<45%), even with extensive recruitment efforts (e.g., multiple points of contact, use of paid databases).¹³

YA research challenges

Tonorezos and Oeffinger (2011) summarized the unique barriers in conducting YA cancer research, including: social and cognitive development of this age group, healthcare system challenges, and inconsistency in clinical and research terminology.¹⁴ At a time in life when YAs typically assert independence and autonomy, cancer-related disruptions (e.g., time off education, career development, and family-building), along with post-treatment challenges, may undermine YAs' ability and motivation for research participation. At this age, coping and stress management skills are still developing.¹⁵ Studies that require returning to the hospital or revisiting painful memories may be difficult for survivors (or their parents).^16–18 Barriers at the provider, institutional, and system levels may exacerbate these challenges in recruiting and enrolling YAs into research studies. For example, lack of providers trained in YA care and YA-specific clinics may affect the ways in which research is discussed and carried out with patients.^19,20 YA Research processes that fail to account for patients' age and stage of development may undermine participation.

Strategies to overcome barriers, such as hiring personnel dedicated to YA recruitment and retention, have primarily focused on clinical trial enrollment.^19,21 Although warranted, behavioral research on the cancer survivorship experience has similarly been limited by disappointing enrollment, small sample sizes, and a lack of longitudinal data. To address the needs of this at-risk patient group,^2–4,22 a logical first step is to engage YA cancer survivors by using qualitative approaches to elicit their perspectives on the barriers that prevent YA research participation.

Study aims

This study aimed at learning about YAs' cancer survivorship experiences and perceptions of cancer survivorship research. Specifically, we sought to identify YAs' perceived barriers to participating in research and to generate potential solutions based on patient-reported experiences. This study was done in collaboration with Stupid Cancer, the largest nonprofit organization dedicated to providing support and resources to YAs with cancer.

Methods

This study was approved by an Institutional Review Board (IRB). Recruitment emails were sent to 329 registered attendees before a patient conference hosted by Stupid Cancer; 151 attendees (46%) expressed interest. A convenience snow-balling sample was enrolled, maximizing the number of interviews and focus groups that could be completed within the time frame. Those who expressed initial interest but were unable to be included in the study due to time constraints were sent an email thanking them for their response.

Participants (N = 19) completed interviews (n = 12) and small focus groups (three focus groups; n = 7) were scheduled in 30–60-minute blocks during the 4-day conference based on availability and time limitations with efforts to minimize overlap with conference events. Data were collected via note taking. Open-ended questions and probes reflected questions such as: What does cancer survivorship mean to you? What are your priorities when it comes to cancer survivorship? Have you heard the term “cancer survivorship research”? What comments or questions come to mind regarding “survivorship research”? After initial opinions were recorded, the NCI's definition of cancer survivorship research was provided, referencing the “physical, psychosocial, and economic sequelae of cancer,” “issues related to health care delivery, access, and follow up care, as they relate to survivors,” and “the health and life of a person with a history of cancer.”⁸

Data analysis

Standard procedures for qualitative data analysis were followed by using grounded theory and thematic content analysis.^22,23 Two researchers (C.B., D.F.) conducted open coding with a subset of data and field notes to develop an initial codebook. Before this, coders established coding rules and jointly coded smaller passages to establish uniformity of application. All remaining data were coded through an iterative process of independent and collaborative coding with input from a qualitative methods expert (D.V.). New codes that emerged from the data were included in the codebook, and all coding was confirmed with group consensus. Next, coders employed axial coding to organize similar codes into higher-order categories. After this, higher-order categories were organized into themes by using select coding. Themes were reviewed collectively and agreed on for inclusion/exclusion with input from YA cancer researchers. This is an established and effective method of attaining confidence in outcomes of qualitative data analysis.^23,24

Results

Sociodemographic and medical characteristics for the sample are presented in Table 1. Participants averaged 33 years of age (standard deviation [SD] = 5.5), were 10 years postdiagnosis (SD = 2.3), and were primarily female (84%). The most common diagnoses were leukemia/lymphoma and sarcoma.

Table 1.

Sociodemographic and Medical Characteristics (N = 19)

Sociodemographic and medical information
	M	SD	range
Age (years)	32.7	5.7	23–41
Age at diagnosis (years)	23.2	9.2	6–38

	n	%
Female	16	84
Cancer type (most common)
Lymphoma	5	26
Leukemia	3	16
Sarcoma	2	11
Other^a	6	32

Other diagnoses included breast, endometrial, colon, testicular, melanoma, and benign brain tumor (n = 1 for each disease group); three participants did not report diagnostic information.

Analyses identified three major themes: (1) perception of cancer survivorship, including three categories: adjusting to a new normal, staying connected, and post-treatment medical care; (2) perception of cancer survivorship research, including two categories: positive and negative perceptions; and (3) recommendations for improving research, including three categories: age-appropriate and patient-focused, greater control and flexibility, and dialogue (Table 2).

Table 2.

Saturation Grid

			Saturation grid
Themes	Categories	Codes/definition	Int 1	Int 2	Int 3	Int 4	Int 5	Int 6	Int 7	Int 8	Int 9	Int 10	Int 11	Int 12	FG 1	FG 2	FG 3
Cancer survivorship	Adjusting to a new normal	Redefining quality of life and self-concept		X	X		X	X		X	X	X	X	X	X	X	X
		Living with instability, uncertainty, and fear		X	X						X		X	X	X
		Interacting with the world				X			X			X		X	X
	Staying connected	Connecting with peers	X				X		X			X	X	X	X	X	X
		Giving back to the AYA community	X				X	X			X		X	X		X	X
		Involvement with Stupid Cancer			X	X		X		X					X
	Post-treatment medical care	Cancer-related medical care				X						X	X	X	X	X	X
	Post-treatment medical care	General medical care				X							X	X	X	X	X
Cancer survivorship research	Positive perceptions	Optimism; hope		X			X	X		X	X	X	X	X	X	X	X
	Positive perceptions	“Get the word out” to change medical care and societal expectations	X		X					X				X		X
	Negative perceptions	Research is overwhelming, inaccessible, and frustrating											X		X	X	X
		Participation is inconvenient and burdensome											X			X	X
		Underlying disappointment, skepticism, and mistrust											X		X	X	X
Recommendations for improving research	Age-appropriate and patient-focused	Make materials appealing (visually; language use)														X	X
		Ensure health literacy											X		X	X	X
		Use technology-based tools that AYAs are familiar with											X		X	X	X
	Flexibility and control	Patient-centered study methods, including more convenient data collection procedures											X		X	X	X
	Back-and-forth dialogue	Share study results with participants											X		X	X	X
	Back-and-forth dialogue	Use AYAs' perspectives to inform research priorities											X		X	X

An “X” indicates that the code was applied in that encounter. Qualitative data were collected from individual interviews (n = 12) and three focus groups (n = 7).

AYA, adolescent and young adult; FG, focus groups; INT, individual interviews.

Cancer survivorship

In discussing survivorship, YAs focused on efforts to redefine their sense of identity and quality of life as they adjusted to a “new normal” postcancer. Staying connected to the YA cancer community was central to redefining their self-concept as a survivor and providing support for others. Frustration with healthcare post-treatment was common and related to oncologic and primary care settings.

Adjusting to a new normal

Almost all participants (95%) spoke of uncertainty after treatment and difficulty in transitioning to survivorship. One participant captured this sentiment:

The most difficult part is … not fitting into a category. You look at me and think I'm cured, but I'm not cured. … Each year I get happy and excited, but also terrified that the stable period is coming to an end. I'm never in remission, but I'm not in active treatment. I'm in this limbo. … It's the worst of both worlds.

A central aspect of this was feeling uncertain about what having cancer would mean for their quality of life, future plans, relationships, and interactions with the world. This included a need to redefine self-concept as depicted in this statement:

I struggle with trying to be who I used to be and at the same time trying to be someone new. Survivorship is trying to figure out who you are now.

Though many were coping well, there was also an underlying sense of feeling lost. Participants reported struggling to manage the instability, uncertainty, and fear brought on by ongoing health problems and the knowledge of future health risks. As one participant stated:

Survivorship is a huge part of my life now. It has to be because cancer will always be a part of me. It means facing my fears and finding ways to keep living despite them.

Participants reported deliberate efforts to balance fears and anxiety with positivity (“not letting fear run my life”) and discussed “lessons learned” (e.g., self-care). These efforts increased their sense of control while dealing with ongoing cancer effects and the unease of living with health risks.

YAs' adjustment to a new normal included interacting with others' expectations of survivors, mainly characterized by assumptions of “normality” without acknowledging survivorship difficulties or assumptions of frailty and permanency of the sick role. This was captured in the following statement:

There's a crowd that says, ‘You're done with treatment, you should be able to do this’. … Or there's a crowd that says, ‘You can't do anything.’

Many participants expressed frustration with others' lack of understanding about post-treatment challenges in personal relationships and educational/employment experiences (e.g., access to appropriate accommodations). One survivor discussed the failure of her university to provide hearing assistance:

It's about the whole picture, getting the right accommodations and support. … I'm not happy just being a survivor. I want to live a life too.

Personal stories of having to advocate for oneself exemplified a societal failure to recognize survivors' needs. Many wished that cancer effects were more commonly understood to ease the burden of informing others about difficulties and needs.

Staying connected

Staying connected to other survivors and the YA cancer community (95%) created a space to be understood while accessing information, support, and validation. Echoing frustrations of not feeling understood, cancer peer relationships implied an underlying struggle with social isolation and lack of support:

I have a lot of social anxiety and just knowing that there are other people like me makes it easier for me to believe that people understand.

Membership in the YA cancer community was a positive manifestation of their cancer experience. Many desired to “give back” and were proud of the support they provided newly diagnosed YAs, in addition to advocacy, volunteering, and fundraising. One survivor described this:

First it was treatment; next it was, ‘How do I get back to life?’; and now it is, ‘How do I give back to others?’

Of note, the downside of staying connected was the mortality risk of one's social network. One survivor reported that she had lost 11 people in 8 months to cancer and described “dealing with PTSD, grief, and loss” as part of the burden of being a cancer survivor.

Post-treatment medical care

Access to specialized, YA cancer survivorship care was also a source of uncertainty and distress (58%). Overwhelming frustration resulted from healthcare systems' failure to account for their needs as young people. Feelings included anger and resentment about prior negative experiences and uncertainty, anxiety, and distress about current needs (e.g., access to specialized YA providers). Discussions about healthcare provision included being denied treatment or subjected to excessive diagnostic testing and referral. YAs perceived a lack of providers' knowledge about YA oncology and survivorship care guidelines, with ramifications on work and family life, employment, and finances:

The first time we [YA cancer survivors] see a new doctor, they're hands off and deer in headlights as soon as they hear cancer history. … Before they consider what the problem might be, I have to go get a CT scan to rule out cancer. I'm shipped off to ‘make sure’. … I have to travel and that means a lot of life disruptions. My boss has been understanding, but … there's a financial impact. And I have to figure out who will watch my kids and I never have time to plan.

Frustration was also seen with providers' failure to address YAs' survivorship needs beyond treatment.

Doctors don't understand. They're happy you're just alive. One doctor laughed at me because I wanted to play hockey again.

Messages such as these exacerbated YAs' struggle to balance identity as a survivor while trying to re-engage in activities and life planning similar to their noncancer peers.

Cancer survivorship research

All participants reported uncertainty about what “cancer survivorship research” encompassed. Given this uncertainty, YAs formed their opinions by drawing from clinical experiences and prior clinical trial participation. Research was seen as an extension of the same healthcare system where they felt like outsiders and perceptions about research were influenced by their perceptions of the healthcare system at large. Forty-two percent expressed negative views of research initially. After hearing the description of cancer survivorship research, most participants had positive reactions about the potential benefits of research (90%). Negative opinions were discussed at length and with greater emotional intensity than positive opinions, which coincided with recommendations to improve research.

Positive perceptions of research

After hearing the definition of cancer survivorship research, many referenced the potential to improve care and give back to the YA cancer community. Long-term survivorship challenges were identified as particularly important to facilitate a broader understanding of YA cancer.

We need to get our word out. To let people know what young adults really go through. To let the next one know what's going on to help them and help them find us.

To this end, feelings included hope, optimism, and forward thinking—referring to the potential of research. Positive perspectives, however, were juxtaposed with prior negative experiences and feelings (e.g., doubt, skepticism). Willingness to participate in future studies was conditional, provided studies were “done the right way.”

I am tentatively and cautiously optimistic that survivorship research could mean something good, but I'm not going to commit to it until I see it. I want it to be person centric.

Negative perceptions of research

For YAs, research was associated with the same healthcare system that failed to accommodate or validate their YA needs as patients. Responses indicated feeling similar to outsiders in the clinical setting, which was perceived as ill-equipped to treat their unique needs. The lack of age-specific care was viewed as unjust and a denial of patient rights by some. As members of Stupid Cancer, participants were acutely aware of the need to be recognized as a distinct patient group and advocate for age-appropriate services. Perceptions of research were influenced by these perceptions of the broader healthcare system, within which research was subsumed.

Negative perceptions included seeing research as inaccessible, overwhelming, and frustrating (e.g., “not written for the lay person”; “it's daunting”). YAs discussed not understanding study materials, which elicited discussion of similar frustrations with clinical interactions and feeling confused and overwhelmed by medical information in general.

The problem is how the research is presented to us. I hate statistics and numbers, makes me feel negative. Present it as if you were talking to a loved one. There needs to be more empathy involved.

Hearing statistics and information is overwhelming. I want to be real, but I get overwhelmed.

Frustration and anger with being unable to understand medical information was amplified by the pressure some felt to be involved in treatment planning given the perceived lack of YA-specialized care. Negative experiences consuming medical information in clinical settings or as self-directed were discussed in tangent with perceptions of study-related information. Feelings of confusion and frustration were also related to interactions with their medical team, giving insight into the larger patient experience that is the backdrop of research processes and patient–researcher interaction.

Research participation was also seen as inconvenient, emotionally difficult, and a time burden. YAs wanted researchers to recognize their challenges and make participation more convenient.

Give us control about how we can participate. It's a lot to ask sometimes. It already feels like cancer takes up so much time and emotional energy.

Failure to explicitly acknowledge the burden of research participation was taken as further evidence that providers (and researchers) fail to understand their unique experiences.

Negative perceptions also included skepticism about researchers' priorities and motivations. Researchers might care more about personal career gain and scientific accolades than patient benefit. Some felt that researchers prioritized the data over their well-being.

They make me feel like a data point, like that's all that matters.

Don't make us feel like some kind of science project.

Don't make me feel like a number, like you don't care. It's all in the approach.

Serving as a patient advisor on an IRB increased one participant's negative perceptions and mistrust.

I was on an IRB at my hospital; hearing them talk about subjects made me feel like I needed to speak up that we're not just a number. It's almost like they're taking advantage of patients.

Recommendations for improving research

While discussing negative perceptions, YAs provided suggestions to increase the appeal of research participation (42%). Suggestions occurred more often in focus groups than individual interviews.

Age-appropriate and patient-focused

Research language and materials were seen as confusing, technical, and dry. Research materials should use colloquial language that is specific to this age group and animations (for internet or smart phone content; e.g., “Make it look good and fun … like it's for young people”). For example, it was suggested that the option to reschedule a survey could read, “Cancer sucks, I want to forget it today” (also highlighting the desire for greater control and flexibility in participation).

YAs recommended that researchers frame discussions based on patients' individual preferences for information.

Talk to survivors. How do they want information to be given? Have it be individualized; people want different things.

Developing an individualized approach to clinical research discussions was emphasized by childhood cancer survivors in which parents were informed by consent providers, despite standard practice to obtain informed assent of minors.

Greater control and flexibility

Many YAs wanted more control and flexibility, participating when it was practically and emotionally convenient. Practically, they did not want time or travel burdens (e.g., to clinic) that were not convenient to their schedules. Answering cancer-related questions carried an emotional burden, and willingness and motivation to revisit cancer memories varied day by day. Recommendations included having internet or smart phone surveys with flexible completion windows and options to reschedule study activities, even at the last minute, as ways to recognize the burden of research participation and survivorship challenges.

Improved dialogue

Participants discussed the need for communication between medical and patient communities. They wanted a dialogue to improve study-specific communication (e.g., dissemination of findings), to stay up-to-date on medical information, and to have a voice in determining research priorities. YAs wanted a greater commitment from researchers to share results with participants using non-technical language. This was seen as a way to stay informed about their disease and post-treatment care guidelines, alleviating some of the burden of self-education and self-advocacy.

The need for researchers to learn from YAs to guide research priorities and inform researchers' approach and methodology was discussed as an important component of this dialogue. Documenting patients' perspectives about their cancer experience, including gaps in care and unmet needs, was seen as critical to developing YA-specific resources and improving clinical practice:

There needs to be more research on supporting our emotional needs; that would show the programs what we need and get more funding.

To this end, YAs felt strongly that their input was necessary to ensure research was conducted appropriately and in line with their best interests.

Discussion

This study aimed at a better understanding of YAs' cancer survivorship experiences and perceptions of survivorship research. A key takeaway of this study was how YAs' negative clinical experiences and uncertainty about cancer survivorship research objectives may undermine YAs' willingness to participate. YAs valued the potential for research to improve care, but they were reluctant to increase interactions with the same healthcare system that overlooked their needs. Patient-generated research recommendations may improve participation rates. Further work is needed to identify specific methodological approaches and to develop guidelines that ensure developmental appropriateness, particularly with younger patients.

Results were consistent with the limited literature of YA cancer research challenges.^14,25–27 Buchanan et al. identified four key barriers to adolescent-focused research: medical mistrust (feeling like a “guinea pig”); belief that clinical investigators are more invested in research than patients' well-being; concerns about quality of life, adverse effects, and loss of autonomy; and risks of participation outweighing benefits.²¹ In our interviews, YAs gave additional insights on these barriers and suggestions to overcome them.

Researchers need to engage in specific strategies to improve communication, collaboration, and trust with the YA patient community. Building patient engagement in research has many benefits, though there are challenges as well, including time and resource limitations.^28,29 Technological solutions may be pivotal to adapting research practices to meet the needs and preferences of this age group. Given the ubiquity of internet access, smart phones, and social media use,^30,31 recruitment and data collection methods that take advantage of these platforms are recommended.^32–34 Without addressing YAs' mistrust and skepticism, however, technology-based solutions may still be limited. Communicating with YAs through media outlets they prefer, using language they understand and are comfortable with, can potentially bridge the communication gap, build trust, and positively affect the patient–researcher relationship.^35–37 Social media (e.g., Facebook, Twitter) have primarily been used for data collection and unidirectional push of information to patients,^34,38,39 but they are increasingly being recognized as key channels for bidirectional communication between patients and providers/researchers.⁴⁰ Given that >90% of YAs use social media, opportunities for leveraging technology-mediated communication strategies to improve YA patient care and facilitate research, while ensuring potential risks (e.g., loss of privacy) are mitigated, should be further explored.³⁰ Guidelines for incorporating patient perspectives into research practices and developing meaningful patient engagement strategies exist,^41–43 but further work is needed to adapt these practices to the YA cancer community.

In our study, YAs wanted collaborative roles across the continuum of translational research.^44,45 Given their age, careful consideration of how to best involve YAs is necessary. Drawing from community-based participatory research methods, researchers should engage the YA community to identify priorities, establish equitable relationships, and develop patient-centered structures for participation; taking time to build trust and sustainability of partnerships.⁴⁶ Initiatives to develop formal curricula and training for patients to take part in advisory roles or as community co-investigators also exist, but they need wider use with age-specific resources.^47–49

Greater collaboration between researchers and patient organizations may be vital to overcoming barriers, building trust, and facilitating communication.^29,42 This study represented a unique partnership of academic researchers and patient organization leaders, allowing access to a hard-to-reach, at-risk patient group. Greater cross-talk among key stakeholders will improve patients' negative perceptions through meaningful dialogue and support initiatives that ensure patient-centered, evidence-based guidelines are being disseminated and implemented.

There were several limitations to this study. Data were collected as part of program evaluation and were limited to YAs attending and being available during a four-day conference. The extent to which YA conference attendees may differ from nonattendees is unknown. Specifically, the importance of “staying connected” and “giving back” may have been over-represented in our study. Although attendees could choose from 43 plenaries, symposia, and break-out sessions, suggesting variability in attendees' schedules, shared conference experiences may have influenced participants' perceptions. Although possible under-representation of the larger YA survivor population does not invalidate the findings of this specific study, data saturation is an iterative, and constantly sought-after phenomenon in qualitative research. Therefore, future extensions of this work should attempt to seek out other samples of YAs in other naturally occurring environments (e.g., cancer clinics, support groups, community wellness centers). The sample was also primarily female and more specific data about sociodemographic and medical characteristics, survivorship care, and research experiences were not collected. Understanding how research perceptions vary based on prior participation experiences (e.g., clinical trials vs. behavioral research) may be important to identifying barriers. Despite these limitations, partnering with Stupid Cancer, a patient organization with long-standing trust with the YA community, afforded the opportunity to reach YAs lost to follow-up or unlikely to respond to traditional recruitment methods. Themes should be validated in a larger, representative sample of YA survivors and with quantitative study designs.

Conclusions

Given the unmet needs of YA cancer patients, clinical and research practices must continue to evolve per the unique psychosocial factors of this age group.⁵⁰ Incorporation of patient input is essential to developing age-specific programs and resources. Future research should explore more specific recommendations from YAs for improving research practices with parallel efforts to develop appropriate guidelines and regulatory systems for including patients in advisory roles and to improve communication and dissemination of findings.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

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