Building a Healthy Body After Cancer: Young Adult Lymphoma Survivors' Perspectives on Exercise After Cancer Treatment

Abstract

Purpose:

Our goals were to evaluate young adult lymphoma survivors' perceptions regarding benefits of exercise after cancer treatment, to identify barriers to exercise, and to understand the types of exercise interventions that may be useful in this patient population.

Methods:

Young adult lymphoma survivors were invited to participate in a survey and focus group. Questions focused on elucidating barriers to exercise as well as potential opportunities for supporting patients in adequate exercise. Focus groups were audiorecorded and transcribed, and data were coded inductively for themes and applied findings.

Results:

Eight survivors participated. Findings were categorized into five main themes: barriers to exercise, facilitators of exercise, personal responsibility for being active, interconnectedness of exercise with a healthy lifestyle, and recommendations.

Conclusions:

Fatigue and frustration with postcancer physical limitations are major barriers to exercise for young adult survivors, whereas support from others, data tracking, and survivor-specific resources are facilitators. Interventions that incorporate fitness tracking technology, are individually tailored, and/or create a community with other young adult survivors may be successful in this population.

Introduction

Adolescent and young adult (AYA) cancer survivors commonly engage in unhealthy lifestyle behaviors.^1,2 Some survivors may be at higher risk than others; a 2013 study found that AYAs and lymphoma survivors were subgroup survivor populations at higher risk for sedentary behaviors, obesity, and poor health-related quality of life (QOL).³ This is significant because these survivors are at increased cardiovascular risk, including anthracycline cardiomyopathy and also coronary artery disease due to mediastinal irradiation.^4,5 AYA lymphoma survivors are also vulnerable to metabolic syndrome and may have a higher tendency to be overweight or obese than their age-matched counterparts with other cancers.^3,6–8

Reflecting similar findings in the general population, studies in cancer survivor populations also show an association between physical activity and reduction in cardiovascular disease risk factors and cardiovascular events.^9–14 Furthermore, physical activity has been shown to improve fatigue levels, increase QOL, and decrease risk of long-term complications.^15–18 Disease history, treatment history, and lifestyle factors unique to survivorship in emerging adulthood come together for poorer health. Physical activity is a simple but powerful tool for combating late effects of cancer treatment.

Asking survivors how healthcare institutions can support healthy behaviors, including physical activity in age-appropriate ways can inform interventions that might be tested for efficacy. We sought young adult lymphoma survivors' stories and opinions to provide a better understanding of exercise in survivorship and to inform future interventions. The goals of our study were to evaluate young adult lymphoma survivors' perceptions regarding benefits of exercise after cancer treatment, to identify barriers to exercise, and to understand the types of interventions that might be successfully employed.

Methods

Research design and approach

A mixed methods approach, incorporating data from participants' electronic medical records, questionnaires, and focus group interviews, was employed to explore young adult survivors' perceptions and experiences of exercise after cancer treatment. Qualitative research is valuable for in-depth exploration of subjects' realities.¹⁹ This study was grounded in interpretative phenomenological analysis (IPA), which is a qualitative methodology from social psychology that focuses on understanding individuals' personal experiences and how they make sense of their social worlds.²⁰

Recruitment

IPA provides flexibility for use with a purposeful sample in identifying research participants who are able to describe specific experiences, such as experiences with exercise after cancer treatment.^20,21 Eligible participants were young adult survivors of AYA lymphoma who met the following criteria: ages 18–35 years, live within 120 miles of our institution, 6 months to 5 years posttreatment as well as those in disease remission who are being treated with immunotherapy, and English speaking. Fifty-four patients were identified as eligible from an institutional database and were invited to one of two focus group interview dates through mail invitation and follow-up phone call. Institutional IRB approval was obtained. Informed consent was provided by all participants.

Data collection

Data were gathered between June and August 2016. Background data for participants were collected from the medical record. General comorbidities as well as neuropathy and psychiatric diagnoses were pulled from the medical record to be analyzed with a modified Charlson Comorbidity Index.²²

Focus groups were conducted in the evening to accommodate young adults' busy schedules. “Part 1” of each focus group's evening involved participants individually filling out questionnaires and “part 2” involved the focus group discussion. For part 1, participants completed a questionnaire consisting of the cancer survivorship QOL questionnaire,²³ the Godin exercise questionnaire,²⁴ and additional questions to determine perceptions of the clinical evidence for exercise after cancer treatment. Following the questionnaires, part 2 involved an audiorecorded focus group interview, conducted using a semistructured interview guide. Two focus group sessions were ultimately conducted, with five participants in the first and three in the second.

Given that our participants may not have been in a group with other AYA survivors before, particular ethical consideration was made to ensuring emotional safety, including making participants aware that they did not have to answer any questions that they did not wish to, introducing the researchers and their backgrounds, and using warm up questions that allowed participants to share their stories if they chose to. A moderator guide established topic areas, but moderators were receptive to discussion that veered toward new topics participants found important. At the end of the event, participants were invited to contact a study team member through email should they have additional content to add. Two participants followed up with additional information and that was added to the data for analysis.

Data analysis

Godin Leisure-Time Exercise and Cancer Survivorship QOL measures were scored according to published algorithms.^25,26 The Godin Leisure-Time Exercise questionnaire calculates a leisure activity score based on the number of periods of exercise for more than 15 minutes that a person participates in per week.²⁴ Those periods get weighted more heavily for strenuous greater than moderate, greater than mild activity, and a final score of active, moderately active, or sedentary is calculated. This tool assesses leisure-time recreational activity, or exercise, and does not necessarily assess nonrecreational physical activity, such as occupational activity or activities of daily living.

The Cancer Survivorship QOL questionnaire involves 41 items rated on a 10-point scale.²³ The tool attempts to quantify QOL using a biopsychosocial model, with questions in the physical, psychological, emotional, and spiritual realms. Questionnaire responses and chart review data were used as descriptive demographic data to aid in interpreting individual responses in the focus group interviews.

Audio recordings of focus group interviews were transcribed verbatim, de-identified, and the written scripts reviewed for accuracy. Transcripts were analyzed inductively using a thematic approach as described by qualitative researchers^21,27–29 and principles of IPA.²⁰ In line with IPA, each transcript was analyzed with consideration to individual experiences as well as themes that emerged within and across different perspectives.

The analysis process involved reading the data and identifying important codes and themes. Two independent coders developed code lists based on an initial read. Similar themes were combined and definitions for the categories were developed and refined to create a code manual. The code manual was used for double coding of each transcript. Discrepancies in individual coding were examined, discussed, and debated until consensus was derived. Nvivo 10 software (QSR International, Pty. Ltd.) was used to manage data and facilitate analysis.

Results

Part 1: participant characteristics and questionnaire responses

Invitations resulted in eight participants for a participation rate of 15.4%. Reasons cited for nonparticipation included scheduling conflicts and distance from study location. Participant characteristics are summarized in Table 1. Demographic differences between those who agreed to participate versus those who did not agree to participate can be found in Table 2. Participants did not have chronic medical conditions measurable by the Charlson Comorbidity Index, but did have health conditions not included in the index that were diagnosed postlymphoma, including hypothyroidism, depression, and anxiety. QOL data can be found in Table 3 and self-reported exercise habits in Table 4. Data on perceptions of exercise benefit can be found in Figure 1. When asked about whether their doctor or someone from their doctor's office had talked to them about exercise recommendations, 87.5% indicated “yes, a little bit,” 12.5% indicated “yes, a lot,” and no one indicated “no, not at all.”

FIG. 1.

Perceptions of exercise benefit. Answering “Do you think exercise will decrease your risk for recurrence of lymphoma?” one patient wrote in “Yes,” but did not choose “Yes, a little bit” or Yes, a lot.” This response is not reflected in the above data.

Table 1.

Summary of Participant Characteristics

Focus group participant characteristic		Range, if applicable
Age, years
Average age on date of focus group	30.7	24–34
Average age at most recent cancer diagnosis	26.5	20–32
Type of cancer, n (%)
Hodgkin lymphoma	4 (50.0)
Burkitt lymphoma	1 (12.5)
Diffuse large B cell lymphoma	1 (12.5)
Follicular lymphoma	1 (12.5)
T cell/histiocyte-rich large B cell lymphoma	1 (12.5)
Sex, n (%)
Female	4 (50.0)
Male	4 (50.0)
Marital status, n (%)
Single	6 (75.0)
Married	2 (25.0)
Employed or in school, n (%)
Yes	8 (100)
No	0 (0.0)
Race (participants could select multiple categories), n (%)
White	6 (75.0)
Asian	1 (12.5)
Other	2 (25.0)
Hispanic/Latino, n (%)
No	7 (87.5)
Yes	0 (0.0)
Choose not to disclose/unknown	1 (12.5)
Average distance between home and study site, miles	39.5	4.4–84.2
Relapse or new cancer, n (%)
No	5 (62.5)
Yes	3 (37.5)
Treatment (participants could select multiple categories), n (%)
Chemotherapy	8 (100)
Radiation	3 (37.5)
Autologous stem cell transplant	3 (37.5)
Allogeneic stem cell transplant	1 (12.5)
Average time since most recent treatment, years	2.97	1.50–4.67
BMI category, n (%)
Underweight (below 18.5)	0 (0.0)
Normal/healthy weight (18.5–24.9)	2 (25.0)
Overweight (25.0–29.9)	1 (12.5)
Obese (30.0 and above)	5 (62.5)

BMI, body mass index.

Table 2.

Differences in Age, Race/Ethnicity, Treatment, and Distance from Study Site for Those Who Agreed Versus Did Not Agree to Participate

Focus group participant characteristic	Agreed to participate	Range, if applicable	Did not agree to participate	Range, if applicable
Age, years
Average age on date of focus group, years	30.7	24–34	28.0	20–34
Sex, n (%)
Female	4 (50.0)		17 (38.6)
Male	4 (50.0)		27 (61.4)
Race (participants could select multiple categories), n (%)
White	6 (75.0)		41 (93.2)
Black	0 (0.0)		2 (4.5)
Asian	1 (12.5)		1 (2.3)
Other	2 (25.0)		0 (0.0)
Hispanic/Latino, n (%)
No	7 (87.5)		43 (97.7)
Yes	0 (0.0)		0 (0.0)
Choose not to disclose/unknown	1 (12.5)		1 (2.3)
Average distance between home and study site, miles	39.5	4.4–84.2	69.1	2.5–197
Treatment, n (%)
Chemotherapy	8 (100)		44 (100)
Radiation	3 (37.5)		17 (38.6)
Autologous stem cell transplant	3 (37.5)		7 (15.9)
Allogeneic stem cell transplant	1 (12.5)		1 (2.3)

Table 3.

Quality of Life, 0 (Worst Outcome) to 10 (Best Outcome)

Quality of life element	Mean
Psychological	6.60
Initial diagnosis distress	3.86^a
Cancer treatment distress	4.00^a
Appearance	5.14^a
Fear of recurrent cancer	5.75
Self-concept	5.86^a
Fear of a second cancer	5.88
Concentration/memory	6.14^a
Anxiety	6.38
Fear of future tests	6.5
Posttreatment distress	8.86^a
Depression	7
Fear of spreading	7.13
Usefulness	7.71^a
Happiness	8.14^a
Control	8.14^a
Quality of life	8.29^a
Satisfaction	8.29^a
Coping	8.57^a
Spiritual	6.88
Uncertainty	5.38
Importance of religious activities	6.25
Importance of spiritual activities	6.63
Positive change	7.13
Spiritual change	7.38
Life purpose	7.38
Hopefulness	8.00
Social	7.05
Family distress	3.88
Financial burden	6.38
Employment	6.75
Home activities	6.75
Feel isolated	7.00
Personal relationships	7.88
Sexuality	8.75
Support/others	9.00
Physical wellbeing	8.02^a
Menstrual change/fertility	6.14^a
Overall physical health	6.43^a
Fatigue	7.75
Appetite	8.13
Sleep	8.38
Aches/pain	8.63
Nausea	9.71^a
Constipation	10.00

Indicates value for which one participant was not included due to incomplete questionnaire.

Table 4.

Godin Leisure-Time Exercise Questionnaire

Exercise level interpretation	No. of participants, n (%)
Active (24 U or more on Godin Scale Score)	6 (75.0)
Moderately active (14–23 U on Godin Scale Score)	2 (25.0)
Insufficiently active/sedentary (<14 U on Godin Scale Score	0 (0.0)

Part 2: qualitative findings

Findings for this study are categorized into five main themes, which can be found with representative quotes in Table 5.

Table 5.

Summary of Themes

Main theme	Subtheme	Description	Participant quotes
Barriers to exercise	Fatigue	Many participants discussed fatigue and deconditioning as major barriers to exercise after treatment. Some felt that this was a particular challenge in the early survivorship period, whereas others felt it was still a problem years after treatment. Others described the fatigue they feel from working long hours. Beyond the limitations this puts on time, work drains energy levels and motivation to exercise at the end of the day. Participants highlighted energy as a particularly limited resource after cancer and described having to carefully determine how they would budget that resource throughout the day. Some also discussed the difficulty peers have in relating to or understanding why they cannot do what other people their age are able to.	“I'm actually a first assistant. So I stay like standing scrubbed in for hours and … some of my cases are really long. So I think just going back into work like fulltime when I'm gonna be scrubbed in for a transplant for hours on end then I would go home and just sleep. Whereas before my cancer treatment I could go home, go to the gym [and] workout. Even now too sometimes if I'm in a really long case I go home and sleep.”
			“Your friends don't understand when you don't always wanna go and like sign up for like a 5K or something, like I don't feel like doing that.”
			“You almost have [to] budget your energy for the day, like I have this much energy but I have to get certain things done for sure. So maybe I can't like get up and go for a walk cause’ I know that I'm gonna have to go grocery shopping this afternoon. So it's kind of a challenge in that respect because you have to almost budget your energy out for the day.
	Frustration with postcancer physical limitations	Participants discussed difficulties in getting their body back to working the way it did before lymphoma. They found this experience of coming to terms with their new normal to be especially frustrating. Many described it as “relearning” their body. Some felt that this barrier was a positive challenge to overcome—a way to prove to others and themselves that they could get back to that physical norm.	“And so when I was in remission and I started to be active again I thought “Oh I can just get right back on the ball again” (laughter) No! … It is cause’ I'm relearning my body basically.”
			“One thing that I do remember getting back into activity immediately after transplant … when you work out really hard sometimes if you push yourself too hard you'll throw up afterwards and I felt like I hit that wall a lot quicker. Like I would be half an hour on the treadmill and I would be running to the bathroom because I would have to throw up.”
			“Yeah I mostly just restarted as like a proof that I could because like for the longest time … I was just gone, like I had no muscle mass or anything. So then there was like a period [where I] barely remembered how to walk and I had to kinda relearn. That was a weird time in my life … Being able to like actually do it now I'll just like [think] yeah, ok, I'm good, I'm back.”
	Lack of time and competing demands	With active lives that include a variety of competing obligations, many young adult participants identified lack of time as a barrier to physical activity.	“I know I can do it. It's just my priorities totally shifted when I decided to be fulltime work instead of going to school full time.”
	Lack of time and competing demands		“I mean the hardest part is that … being a young adult … I still was trying to make a living, pay my bills and, you know, I always kept myself busy with coaching. Like … this is my first full year of not coaching a sport and not coming home at 8:30 every single night.”
	Boredom with exercise routines	Several participants said that a major barrier for them is boredom, as exercise can feel monotonous. For example, some said that if their phone is not charged and good music downloaded, they will not work out.	“Just sometimes exercise is boring too because honestly it's like I'd rather watch Netflix or just rather go out.”
	Boredom with exercise routines		“I have like ADD when it comes to exercising sometimes. I just like different things and so it's just a matter of me actually going and trying different classes.”
	Lack of AYA cancer survivor-specific activity resources	Some AYA lymphoma survivors talked about a lack of resources specific to them. Others said that they did not know what cancer survivorship resources were out there for young adults.	“I would try to push myself to take classes at the [gym] actually and there wasn't really any one group that could meet the needs because it was so specific. There wasn't really like a cancer rehab program out there.”
	Lack of AYA cancer survivor-specific activity resources		“There's a lot of stuff [AYA cancer survivor resources] that we don't know and if we don't know, [then] we don't know where or what to ask.”
	Other	There were a variety of other barriers that participants mentioned, including weight gain, aches, and pains, not knowing what exercises to do, and lack of accessibility of exercise facilities in terms of location and finances.
Facilitators of exercise	Support from others	Participants talked about support from others as being a facilitator of exercise. Some discussed this support as being from their physician in terms of the physician sharing their own experiences with exercise. Others had gotten support from other cancer patients or survivors. Yet others found support in friends or loved ones.	“They do have the groups here like those cancer support groups and so forth—like I went to the nutrition group. That's something I just did on my own cause I just know that is occurring … That was helpful.”
Facilitators of exercise	Support from others		“It helps to have other people too that are active around you. My brother runs marathons so [that] was kinda more motivating to me plus at the time [it] was more mental. Just to be able to exercise helps relieve stress.”
	Data tracking	Some participants use apps or other methods to record data about their workout habits. They find tracking the numbers to be motivating. Some commented that having a goal and knowing how far they have left in that goal helps them push through to the end of their workout.	“I tend to track whatever I do just cause’ I like to do that. I'm a numbers person so it helps me to see the numbers. Even just, like, I prefer running on treadmills because … I can track numbers … It's like a little game. Whereas when I'm just like running outside … I don't know how fast I'm going [and] I don't know how far I've gone. It's a lot easier to motivate myself being like ‘ok I got like .24 to go here. I can just like do da da da, ok 0.5, let's go.’ So that's easier for me. I just like the numbers and any information.”
	Data tracking		“Yeah I do the tracker stuff too. I very much need numbers … I'm like ‘okay just gotta get to this number.’ It's gotta be an even number before I can end.”
	Cancer survivor-specific resources	Some cancer survivor-specific resources were mentioned as having been motivating for participants. These were LIVESTRONG at the YMCA and First Descents.
	Motivation in general and other factors	Other motivators mentioned included physical therapy, employee wellness programs, and thinking about physical activity as an investment in the future. Participants also talked about motivation in general, saying that if you feel highly motivated, then that inner force can help overcome other barriers such as fatigue.	“I'm finding, like, baby steps. I'm getting to where I want, but I have to think of my time right now as an investment to what I want to do in the future. So far that's what's motivating me right now even though I'm not as, like, active as I would like to be.”
Personal responsibility for being active	Patient education does not necessarily translate into action	While healthcare providers had counseled them about exercise, many participants felt that this generic advice was not particularly helpful to them. They felt satisfied that the conversation was brought up, but did not feel that it influenced their habits.	“I did a lot of sports in high school and college so I like know how to get myself active, like that's fine … I kinda just view [the doctor telling me to exercise] as like the dentist telling you to brush your teeth.”
	Personal mindset to be physically active	Participants continually brought up the idea that they need internal motivation or an exercise-oriented mindset to actually partake in physical activity. For some, this was expressed as a specific turning point decision to get fit after treatment. For others, it was expressed as a more general sense that there is nothing that someone else can do to help them become active—they need to make that decision on their own. Some talked about mental tricks for getting in the right mindset, such as putting their gym clothes in the car for after work.	“I think just going back to normal life is what really made me bounce back to wanting to work out again or wanting to do certain things again because I wasn't able to while I was doing treatment. There wasn't anything that gave me the extra push, it was just myself.”
			“People can tell me to work out as much as they want, but at the end of the day I'm the one who's gotta put on the shoes.”
			“And then [at the end of treatment] I [thought] I need to change something because at that point I was going through a lot of anxiety just through work and stress. I gotta change something, so decided, you know it was winter, so I'm gonna start running. I started on the treadmill and said ‘ah this is boring,’ so said ‘ah I'm gonna run outside.’ So I got all the gear and I really enjoyed that challenge of just running outside on the ice.”
Interconnectedness of exercise with a healthy lifestyle	Role of diet in being physically active	When asked about physical activity, participants often talked about a healthy diet. Many felt that diet and exercise are inseparable. Some also mentioned feeling that they ate worse after their cancer treatment because they were under the impression that they could not eat fresh, healthy fruits and vegetables during chemotherapy due to microbial concerns.	“I know diet has a lot to do with it because I notice whenever I go back to eating really crappy my energy level just plummets and I don't wanna work out. I don't wanna do anything active.”
			“I think that helps to motivate you if you do both, each at the same time, eat better and exercise … that way, like, you see that donut [and think] ‘oh you know why am I exercising if I'm gonna eat that?’ and vice versa. It's like, you know, I should be exercising if I'm eating better.”
			“One thing that I really like about the transplant process … is that we met with the nutritionist probably a couple times a week when we were in transplant. And they would tally up how many ounces of water or fluids you were getting and they would tally up your protein count and everything and they would tell you, “for tomorrow I want you to focus on this” and I feel like after that 2 week period that was something that I was really lacking. Because if I didn't have to eat meat when I was still nauseous there's no way I would touch it. So having someone hold me accountable to my fluids, to my protein count, to those things I think would have been immensely helpful in that recovery process.”
	Mental state	In general, participants viewed physical wellness as inseparable from more holistic wellness. As such, participants felt physical activity is important, but that becoming physically active after cancer treatment requires the right mindset or mental state.	“Aside from the concrete barriers of time and access, there seemed to be a theme of self-esteem and sense of self. I'm curious what the impact of addressing mental health and resiliency would have on physical recovery and survivor outcomes … I don't attribute my excellent quality of life or overall wellness to physical activity, so much as to what I have done for my mental and spiritual wellbeing. While I'm an n of 1, I suspect many survivors would agree that their journey back to health began not with physical activity, so much as their attitudes regarding their health, as well as their spiritual and mental health. “
	Mental state		“Even though I feel better physically, the mental side effects did not completely go away for me. I felt the effects of chemo brain and heightened levels of anxiety for a long time after treatment. The only thing that started to remove the anxiety for me was starting meditation last fall. I think my doctors and nurses had recommended classes or support groups … but I was too stubborn or ignored their advice. Maybe prescribing people meditation therapy or yoga after the treatment might help. That way if they don't like it at the time, they at least know what it is like if they think about it in the future.”
	Role of other elements in being physically active	Participants continually brought conversation about exercise back to other elements of wellness that they felt feed into the ability to be physical active. Some additional factors mentioned included sleep and hydration.	“When I get the right amount of sleep, get … adequate amounts of liquids in me, and eat better … that's when I feel healthier. I feel better. I wanna actually go out do something.”
Recommendations	Fitness apps and wearable technology	These participants were excited about fitness apps and wearable technology. Participants wanted to be able to share these fitness data with their healthcare provider for accountability purposes. In terms of fitness technology, participants talked about both different methods for recording data (i.e., smartphone, smartwatch, and other wireless activity trackers) as well as an app for storing and tracking those data and connecting with other young adult cancer survivors to share experiences and workouts. Participants also thought the app could be used to track other elements of wellness in cancer survivorship, such as specific symptoms or fluid intake.	“Yeah I think then [with a mobile app and sharing data with a provider] I would probably feel more obligated to do [exercise] because then I would just feel bad. I'm like ‘oh I'm letting Dr. X down’.”
			“I think it'd be cool to have something new that could also track your symptoms too. Like, if you're having a day like when I was going through my treatment I had a symptom tracker where I'd keep like fevers, fatigue level and stuff like that. So if they geared it towards like cancer patients or post-treatment patients so they would have something like ‘Ok this is where you're keeping track of [this stuff]. On a scale this is your pain today, this is your fatigue level,’ and then kinda figure out what you're at and then like what your exercise was and seeing how that changed like for the day to day.”
			“It could be like—‘oh hey, so these people had classic and then these people had Hodgkin.’ You can like actually find what people have [like] subtype of lymphoma or any cancer.”
	Fitness groups for young adult cancer survivors	Many participants liked the idea of a fitness group with other young adults who have had cancer. They said that it would not have to be disease specific, but that it would be important for it to be targeted based on age demographics. However, some did not feel that a group like this would be feasible in the places they live, as most participants lived in towns with a small population.	“Group session definitely helps with motivation too. Other people are doing the same activities you can say ‘How are you doing on this?’”
			“Well if it's all young adults doing it then you know you're not with … then I'd be a little bit more willing to try something like that. But based on where I live there's not really a lot of people that are in my demographic because I live in a tiny 200 person farm town, so …”
			“[It would] be like this person went through this stuff too and they know that I'm tired.”
	Variety of exercises	Many participants reported that practicing a variety of types of activities combats boredom and makes exercise more interesting.	“Variety is huge in basically anything you do. Your food, your diet. Keeping the same thing [for anything], you can … get bored with that.”
	Variety of exercises		(For an AYA exercise group) “One day you might do weight training, another day you might do just [do] like some cardio stuff or like stretching and … low impact and different things. So there's a variety so everybody's needs and issues too are met.”
	Timing of survivorship wellness conversation	Opinion varied on when the best timing of a survivorship wellness conversation would be from right away after the last treatment to the 3-month check-up.
	Workout supervision	Some participants felt direct supervision of and assistance with exercise would be helpful early on after treatment as a way to optimize the balance between not wanting to cause harm versus not wanting to be lazy.	“It wasn't that I it didn't know how [to exercise]. I knew how, but I was honestly just really worried that doing so I would pass out and hurt myself.”
	Workout supervision		“You don't really know what you're capable of … You don't want to hurt yourself either. So I think that's really smart to do [work with a physical therapist or trainer]; something like that for someone just to watch you to make sure that you're not pushing yourself more than you need to but then you're also not being lazy.”
	Personalized plans	Participants wanted individualized plans specifically designed for them. These would take into account not only activity preferences, but also disease- and treatment-specific characteristics.	“I [would like] if it was really specific. I mean we all came from different diagnoses and different stages and different recovery times.”
	Personalized plans		“In terms of things that would facilitate me or motivate me I think a lot of it would be like some guidance as to what would be useful or relatively, you know, condition-specific in terms of like well you have had a bone mass so it'll be important to build bone mass. We want you to do strength training … those sorts of things … that's kind of a motivator for me to try to prevent things from coming back or from the complications from that getting worse.
	More connection to available resources	Many felt they would have benefitted from having more knowledge about the resources available to them. Some suggested giving a link to a comprehensive online list of young adult survivorship resources that they could browse on their own. Others felt it would be best for the healthcare provider to suggest resources based on their specific situation.	“If I wanted to find out more about it, a link or something like that for me to go look for it would be great … if you could just put it there and if they really wanted it they would go search for it themselves.”
	More connection to available resources		“They [healthcare providers] just really need to know what they [the patient] are interested in … And then from there they can figure out what kind of resources they have available to them.”

AYA, adolescent and young adult.

Barriers to exercise

Barriers reported include fatigue, frustration with postcancer physical limitations, lack of time, competing demands, boredom with exercise routines, and a lack of knowledge about AYA cancer survivor-specific resources. Participants described a need to budget energy, often putting exercise at the bottom of a long list of important tasks. Describing an often discouraging quest to return to a precancer level of physical functioning, participants talked about having to “relearn their bodies.” Anemia, pain, weight gain, loss of endurance, and reduced muscle mass after treatment were cited as contributing factors to posttreatment fatigue and a new, frustrating postcancer body overall. Additionally, participants described the compounding barrier of peers not relating to or understanding this new normal.

Facilitators of exercise

Support from others, ability to track activities, and easy access to cancer survivor-specific resources were identified as facilitators of exercise. Support from loved ones or even a doctor provided a level of accountability. This supportive network was also inherent to the cancer survivor exercise programs that participants identified as useful. LIVESTRONG at the YMCA was described as having been helpful for those with young families by providing free membership for children and spouses. Other programs geared specifically toward young adult survivors, such as First Descents, were found to be helpful in providing connection to other AYA survivors. Many participants also said that exercise is more fulfilling when they track their activities and other health-related data on apps or through wearable technology.

Personal responsibility for being active

Personal responsibility was reported as both a barrier to and facilitator of exercise. It was frequently cited as a barrier to a doctor or healthcare institution helping survivors become more active. They felt that a healthcare institution can put resources into facilitating exercise, but that a lack of intrinsic motivation will ultimately trump those efforts. On the side facilitation, some described an “aha moment” in which they made a decision to get fit after treatment and then succeeded in that plan because of intrinsic motivation.

Participants did not have specific advice on how to promote motivation, but they did report specific approaches that they felt do not work. In particular, participants felt that a physician telling them to exercise in a generic way is not helpful and that an exercise prescription would not be motivating. Some equated this to a dentist telling you to brush your teeth; patients already know that they should be brushing their teeth (or exercising, for that matter), and simply telling them to do so is ineffective.

Interconnectedness of exercise with a healthy lifestyle

The interconnectedness of different elements of a healthy lifestyle with exercise was discussed extensively. Many felt that eating healthy food was important for feeling energized to exercise. Individuals also discussed weight gain during or after treatment and emphasized that eating healthfully was important for getting back to their precancer weight. Some shared that they were under the impression that they should be eating prepackaged, unhealthy foods during treatment to avoid fresh fruits and vegetables. They felt that this impression was instrumental in developing poor eating habits while receiving chemotherapy and led to poor eating and exercise habits after treatment.

Participants also emphasized a mind–body connection. A healthy mental state was reported as vital to healing overall, let alone becoming physically active, after treatment. Some participants felt that their mental health was more shaken after cancer than their physical health, and that this aspect had yet to be addressed. Others said that for them, it would be impossible to become more physically active before their mental and psychological wellbeing was improved. Some described healing practices with a mind–body connection, such as meditation or yoga, as useful in addressing the health of AYA survivors on a more holistic basis.

Recommendations

Primary recommendations were fitness apps and wearable technology, cancer survivor-specific exercise groups, and personalized plans. Participants felt that fitness apps and wearable technology offer many beneficial potential features such as the ability to share data with their clinician, connect virtually with other cancer survivors, track progress, and incorporate other wellness aspects, including survivor-specific issues such as treatment-related symptoms that might affect activity level.

In terms of a cancer survivor-specific group, participants thought that such a group could provide social support in addition to exercise support. A group that is similar in age was viewed as the most important characteristic of a survivor exercise group, while being disease-specific was viewed as unimportant. Some even said that all young adults dealing with any chronic illness should be included. When asked about paying for or traveling to such a group, participants felt that it would have to be available within a half an hour of their home and at very little cost.

Highly individualized plans with attention paid to personal activity preferences as well as disease and treatment type were also described as significant. In addition to individualization based on activity preferences, participants also wanted individualized advice based on their particular wellness barriers.

Discussion

Our participants were aware of the importance of exercise in survivorship, and all indicated that someone from their healthcare team had talked to them about exercise in survivorship. As they elucidated in the focus groups, however, knowledge is not enough.

Research suggests that social networks can be beneficial in promoting exercise.³⁰ Our participants felt that survivorship groups should be similar in terms of age (oriented toward young adults), but that the particular disease subtype (lymphoma) was less important. Communities for AYA survivors that incorporate exercise exist already and supporting existing endeavors as well as connecting young adult survivors to these resources would be an accessible first step to better supporting this population. This would require providers to have a basic awareness of the AYA resources available, access to resource databases, and/or the ability to connect patients with another member of the healthcare team with this knowledge.

The participants in our study reported strong interest in fitness trackers and smartphone applications to manage activity data, share data with providers, and connect with other AYA cancer survivors around fitness. This has implications for providers, who could personalize recommendations based on individual data. There is significant interest in the oncology community for utilizing mobile technology to connect with patients outside of clinical encounters. A tablet computer-based self-assessment between clinic visits was shown to improve QOL, decrease emergency room visits, increase time on palliative chemotherapy, and improve survival in adults with advanced cancer.^31,32 There is a need to study the role of mobile technology in our target population.

Our participants also felt that survivorship care should focus on the wellbeing of the whole person, rather than just specific aspects such as exercise. They felt that the timing of these survivorship wellness discussions should optimally occur 1–3 months after treatment, as opposed to 1–5 years later as they often do today. Participants desired comprehensive, highly personalized advice, such as detailed nutritional recommendations based on their cancer history.

We hypothesize that this need for intensive, individualized survivorship care may stem from the psychosocial needs of AYA survivors immediately after treatment. While being treated for cancer, patients have significant medical oversight and often build strong bonds with their cancer team. The transition from treatment to survivorship may feel abrupt.³³ Thus, they may need a more graded, hands-on approach to survivorship care than what is currently being provided. Participants suggested an interdisciplinary cancer rehabilitation program. These programs exist in some places, but are expensive to implement and may be difficult for patients who do not live near the facility to access.

Limitations to our study include low participation rate and small study size. However, because the focus group format allowed participants to build off ideas of one another, we developed a rich data set for thematic analysis. As shown in Table 2, the average distance between home and the study site was greater for those who did not participate compared to those who did. Also, there was a larger proportion of participants who underwent stem cell transplant who participated, compared with those who did not. We hypothesize that perhaps those young adults who have undergone more extended and intensive treatment may feel a greater desire to connect with peers who have undergone similar experiences, and thus may be more prone to participating in a focus group like this one.

A limitation for broad application of these findings was the racial and ethnic homogeneity of our study group, which is reflective of the demographics of our patient population as a whole. Because participants were recruited from an institutional database which is maintained by the adult hematology practice, our sample was also skewed toward the older end of the young adult age group. Another potential limitation was that our group reported more exercise compared with other cancer survivors.^34–37 In comparison to another study which found only 48.7% of their AYA survivor participants to be meeting activity guidelines after treatment, we found 75% of our survivors to be sufficiently active.³⁸ It's possible that some of this difference may be due to a small sample size, but we cannot rule out self-selection bias.

Strengths of this study include similar characteristics between our group and cancer survivors as a whole and detailed qualitative data to elucidate a complex issue. To our knowledge, this is the only study of its kind that is lymphoma specific. Research suggests that lymphoma survivors area particularly at-risk group for being overweight or obese and for having poorer health-related QOL, highlighting the need for disease-specific research.³ Furthermore, our study identified similar themes to those reported by other groups, strengthening the validity and generalizability of these findings.^39,40 Our study is different from previous work in that we asked survivors about the particular kinds of resources or interventions that would be helpful to them, a theme which is summarized under “recommendations” in Table 5.

The results of this study are a call to reexamine the role of interdisciplinary care for AYA cancer patients and survivors. A truly integrative approach to health after treatment is beyond the scope of hematology/oncology practitioners alone. Primary care providers, social workers, psychologists, community groups, colleges and universities, and other players must be engaged to create the type of social network that will support wellness in this population. Hematology/oncology practitioners must also recognize the significance of and ask about psychosocial needs of AYA cancer survivors and address them adequately.

Conclusions

Fatigue and frustration with postcancer physical limitations are major barriers to exercise for AYA lymphoma survivors, whereas support from others, data tracking, and survivor-specific resources are facilitators. Many AYA survivors see exercise as inseparable from other aspects of wellness such as mental state and nutrition. Interventions that incorporate fitness tracking technology, provide variety, are individually tailored, and/or create community with other AYA survivors may be successful in this population.

Footnotes

Acknowledgments

This study was funded by Arnold and Kit Palmer Benefactor Award. It was approved by the Mayo Clinic IRB.

Author Disclosure Statement

No competing financial interests exist.

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