Improving Symptom Management for Survivors of Young Adult Cancer: Development of a Novel Intervention

Abstract

Purpose:

Improved symptom management is a critical although unmet post-treatment need for young adult (YA) cancer survivors (aged 18–39 at diagnosis). This study aimed to develop and refine a behavioral symptom management intervention for YA survivors.

Methods:

Phase I: YA survivors (N = 21) and oncology providers (N = 11) completed individual interviews and an online, self-report assessment to examine symptom experiences, the need for a behavioral symptom management intervention for YAs, and perceptions about potential intervention components, structure, and format. Phase II: YA survivors (N = 10) completed user testing sessions, providing feedback on the prototype intervention materials (paper manual and mobile application), and completed an online assessment. Quantitative data were examined using descriptive statistics. Rapid qualitative analysis, a methodologically rigorous standardized approach, was used.

Results:

Pain, fatigue, and distress were ranked as top concerns by most YAs and providers. Phase I interviews underscored the need for a symptom management intervention for YAs. YAs and providers highlighted potential coping strategies and program format/structure suggestions (e.g., small group format) to best meet YAs' needs. A prototype intervention was developed combining the following: traditional behavioral symptom coping skills; home-based physical activity; strategies from Acceptance and Commitment Therapy and Meaning-Centered Psychotherapy; and strategies to foster self-compassion. Phase II user testing sessions highlighted strengths and suggestions for refining the prototype materials.

Conclusion:

Post-treatment symptoms are common for YAs. A tailored behavioral symptom management program was developed and refined with input from YAs and providers and will be examined for feasibility and acceptability in a pilot randomized controlled trial.

Clinical Trial:

Clinicaltrials.gov identifier NCT04035447

Introduction

In the United States, there are >600,000 survivors of young adult (YA) cancer, aged 18–39 at diagnosis.¹ Treatments for YA survivors can result in persistent^2–4 physical symptoms (e.g., pain, fatigue)^5–7 and emotional distress (e.g., anxiety, depression).^7–11 YA survivors are diagnosed during a critical developmental period when they are working to achieve complex, age-related goals (e.g., educational, career, relationships, family building).^12–15 Physical symptoms and emotional distress disrupt YAs' abilities to achieve life goals and plan for the future^2,5,16–21 and contribute to significant social, economic, and health care burden.^22–25

Symptom management is rated by YA survivors as a critical although unmet health care need^5,26,27 and is a significant issue in their transition to survivorship.^28,29 YAs often lack confidence in managing physical symptoms and distress and have more difficulty coping with these challenges than older or younger survivors.^30,31 The National Cancer Institute^32,33 and the National Academy of Medicine (formerly Institute of Medicine)³⁴ have highlighted the critical need for interventions to reduce symptom burden and promote self-efficacy and self-management of symptoms for YA survivors. However, there remains a paucity of evidence-based symptom management interventions for YAs.

The majority of symptom management interventions for YAs with cancer target symptoms experienced in the context of adjuvant treatment.^35–37 Interventions developed for YA survivors post-treatment have focused on reducing psychological symptoms;^38–40 yet physical symptoms often co-occur, are interrelated with psychological symptoms,^5,41 and these co-occurring symptoms are associated with greater symptom intensity and interference.^42,43 Meta-analytic data and reviews of studies conducted with primarily older (M > 40 years) cancer survivors suggest that behavioral symptom management interventions result in significant reductions in physical and psychological symptoms, improved self-efficacy for symptom management, and decreased symptom interference.^44–49 However, YAs represent a small portion of the overall study samples^49–52; consequently, the efficacy of these interventions for YA survivors is largely unknown. In addition, symptoms often impact valued life areas for YA survivors that may be unique to their developmental stage and activities consistent with their life phase (e.g., education, career, parenting). The approaches needed to promote symptom management and address symptom interference that have been evaluated among older cancer survivors may not consider and/or address the unique needs associated with YAs' developmental stage.

Guided, in part, by the ORBIT Model of behavioral intervention development for chronic diseases,^53–55 our objective was to develop and refine a novel behavioral symptom management intervention targeting both physical and psychological symptoms to meet the needs of YA survivors.

Methods

Setting and participants

Study procedures received institutional review board approval (Pro00103249). Eligible survivor participants had: (1) received a cancer diagnosis between ages 18 and 39; (2) received a diagnosis of hematologic, breast, endocrine, or gastrointestinal cancer, melanoma, or germ cell tumor; and (3) completed curative treatment involving multimodal therapy within the last 5 years. Additional eligibility criteria included the ability to speak/read English and provide informed consent. Exclusion criteria included major or untreated/uncontrolled mental illness. Eligible oncology providers were involved in the care of YAs.

Participants were recruited between January 2020 and April 2021. Survivor participants were identified using electronic medical records. A letter was then sent to the survivors, and they were subsequently contacted through telephone. Provider participants were contacted through email. All participants provided written informed consent and were compensated $30.

Phase I: intervention development

During the Discovery Phase of the ORBIT Model, the primary goal is to identify a significant clinical problem.⁵⁵ We aimed to achieve this goal during Phase I by obtaining feedback from providers and YA survivors about YAs' symptom experiences, the need for a behavioral symptom management intervention for YAs, and participants' perceptions about potential intervention components, structure, and format.

Recruitment letters were sent to 42 survivors; 69% (n = 29) were able to be screened for eligibility. Of these, 76% (N = 22) consented. Twenty-one interviews were completed; one survivor was lost to follow-up after consent. Participants declined due to time (n = 2) or lack of interest (n = 2). Three interested participants were lost to follow-up before consent. Fourteen oncology providers were approached; N = 11 (79%) consented and participated.

Individual survivor interviews (N = 21) were ∼60 minutes and completed through telephone. Provider interviews were completed in-person (n = 10) or through Zoom (n = 1; due to COVID-19). Interviews were conducted by the study PI (C.S.D.), informed by semistructured interview guides (Supplementary Materials), and audio recorded. Survivors and providers were asked about survivors' physical and psychological symptom concerns after cancer, symptom interference with life goals and relationships, communication with health care providers about symptoms, and strategies/interventions to address symptoms and their efficacy. Survivors and providers commented on the need for and benefit of a behavioral symptom management intervention targeting YAs and provided input on potential intervention components and the proposed intervention structure/format.

Phase II: intervention refinement

During the Design Phase of the ORBIT model, the focus is on defining and refining acceptable and feasible components of a behavioral intervention.^53–55 The use of qualitative research methods with small sample sizes has been suggested to gather feedback on an intervention's components and their feasibility and acceptability^53,55 while also further refining the intervention to move toward subsequent iterative steps of the ORBIT model.

Recruitment letters were sent to a new pool of 27 YA survivors, and 70% (n = 19) were screened for eligibility. Fifty-eight percent (n = 11) of eligible survivors consented and completed online questionnaires. One consenting survivor was lost to follow-up before the user testing session. The remaining individuals were lost to follow-up before consent (n = 6) or declined (n = 2; lack of time).

The developed intervention included printed intervention materials and a mobile application, both of which would be used by YAs during their participation in the symptom management program. User testers reviewed the prototype intervention materials over Zoom with a member of the study team (C.S.D. or J.M.S.), with half (n = 5) reviewing the printed materials and half (n = 5) reviewing the intervention-specific mobile application. Structured session guides were used to direct YAs' review and discussion of the study materials (Supplementary Materials). User testing sessions were ∼60 minutes and audio/video recorded.

Survivors reviewing the printed intervention materials provided input on the layout, content, and length of materials. Survivors reviewing the application commented on its layout and functionality/usability. User testers were asked about the applicability of the images, examples, and intervention strategies to YA survivors' experiences and to provide suggestions for improving relevance.

Study measures

All study participants completing either phase I or phase II completed a brief online assessment.

Survivor assessment

Survivors provided medical (e.g., cancer diagnosis, treatment history) and sociodemographic information as well as information about their symptom experience.

Symptoms

Psychological distress in the last week was assessed using the Patient-Reported Outcomes Measurement Information System (PROMIS) Depression (eight-item) and Anxiety (eight-item) short forms.⁵⁶ Fatigue was assessed using the PROMIS Fatigue (eight-item) short form. Each had good internal consistency reliability across study phases (Depression: α = 0.82–0.93; Anxiety: α = 0.70–0.94; and Fatigue: α = 0.94–0.97). The Brief Pain Inventory⁵⁷ assessed pain severity (α = 0.83–0.91) and interference (α = 0.93–0.98) in the last week.

Self-efficacy for managing symptoms

Participants completed the six-item Self-Efficacy for Managing Chronic Disease Scale,^58,59 rating their confidence in their ability to keep symptoms from interfering with their life and health (α = 0.88–0.89). Participants also completed the PROMIS Self-Efficacy for Managing Chronic Conditions-Managing Symptoms (four item) short form,⁶⁰ rating their confidence in their ability to manage symptoms during daily activities, in relationships, in public places, and in working with their doctor to manage symptoms (α = 0.79–0.89).

Concerns

Survivors rank ordered their top 5 post-treatment concerns from a list, which included pain, fatigue, emotional stress/distress, cognitive problems, sleep problems, sexual problems, fertility, peer relationships, family relationships, finances, and return to work/school. Survivors could also specify other concerns.

Medical provider assessment

Medical providers completed items asking about their demographics, medical training (e.g., degree, years of practice), and training in adolescent and young adult oncology.

Concerns

Providers rank ordered the top 5 concerns endorsed by their patients following treatment from the same list of concerns ranked by survivors, described above (see Concerns section).

Analytic strategy

Data from online assessments were examined using descriptive statistics. Pearson or Spearman correlations were used to examine the relationships between self-report measures completed by survivors.

Interviews and user testing sessions were transcribed verbatim. Rapid qualitative analysis, a methodologically rigorous, standardized approach recommended for intervention development, was used.^61–63 Rapid qualitative analysis provides a timely systematic method for analyzing qualitative data without compromising the validity of results.^64,65 It allows for the identification of intervention elements as well as barriers and facilitators of a program.⁶³ Interviews were summarized using a structured template that mapped on to the interview guides. Interview summaries were transferred into a matrix (respondent × interview domain) to summarize key information and interview themes to then identify trends in responses.⁶⁶ The use of direct quotes in rapid qualitative analysis is minimal⁶⁷ as the goal is to create a brief, although thorough, organized summary of the data. Information obtained from participants was used to develop and refine the prototype intervention and study procedures.

Results

Participants

Survivors (N = 32) were M = 31.9 years old and primarily female (53.1%) (Table 1). The majority of participants were white (71.9%) and non-Hispanic (96.9%), which is consistent with the racial/ethnic breakdown of YA cancer survivors treated at our institution. Survivors had been diagnosed with breast (18.8%), endocrine (i.e., thyroid; 12.5%), gastrointestinal (35.0%), hematologic (21.9%), or germ cell (testicular; 15.6%) cancers or melanoma (6.3%). Survivors were M = 41.9 and M = 28.4 months since diagnosis and treatment completion, respectively.

Table 1.

Sociodemographic and Medical Characteristics and Symptoms Experienced by Young Adult Survivor Participants (N = 32)

	Phase I development interviews (N = 21)	Phase II user testing (N = 11)	Total (N = 32)
Age, mean (SD)/range	31.8 (4.7)/25–38	32.1 (6.6)/20–39	31.9 (5.3)/20–39
Race, N (%)
African American	4 (19.0)	1 (9.1)	5 (15.6)
Asian	1 (4.8)	1 (9.1)	2 (6.3)
White	15 (71.4)	8 (82.7)	23 (71.9)
Not provided	1 (4.8)	0 (0.0)	1 (3.1)
Other: Middle Eastern (Iran)	0 (0.0)	1 (9.1)	1 (3.1)
Ethnicity, N (%)
Hispanic	1 (4.8)	0 (0.0)	1 (3.1)
Not Hispanic	20 (95.2)	11 (100)	31 (96.9)
Gender, N (%)
Male	9 (42.9)	6 (54.5)	15 (46.9)
Female	12 (57.1)	5 (45.5)	17 (53.1)
Education, N (%)
Some high school	1 (4.8)	0 (0.0)	1 (3.1)
Completed high school	3 (14.3)	0 (0.0)	3 (9.4)
Some college, vocational, or training school	3 (14.3)	0 (0.0)	3 (9.4)
Associate degree	4 (19.0)	0 (0.0)	4 (12.5)
College graduate	6 (28.6)	5 (54.5)	11 (34.4)
Some graduate work	0 (0.0)	1 (9.1)	1 (3.1)
Graduate degree	4 (19.0)	4 (36.4)	8 (25)
Employment status, N (%)
Full-time student	1 (4.8)	1 (9.1)	2 (6.3)
Working part-time	2 (9.5)	1 (9.1)	3 (9.4)
Working full-time	18 (85.7)	7 (63.6)	25 (78.1)
Unemployed	0 (0.0)	1 (9.1)	1 (3.1)
Disability	0 (0.0)	1 (9.1)	1 (3.1)
Health insurance, N (%)
Yes	20 (95.2)	11 (100)	31 (96.9)
No	1 (4.8)	0 (0.0)	1 (3.1)
Type of health insurance, N (%)
Parent's insurance	2 (9.5)	0 (0)	2 (6.3)
Employer/former employer	14 (66.7)	10 (90.9)	24 (75)
Medicaid/CHIP/government assistance	1 (4.8)	1 (9.1)	2 (6.3)
Another government assistance plan (e.g., social security disability)	1 (4.8)	1 (9.1)a	2 (6.3)
Other
Affordable care act	2 (9.5)	0 (0.0)	2 (6.3)
Veteran's administration	1 (4.8	0 (0.0)	1 (3.1)
Cancer type, N (%)
Breast	3 (14.3)	3 (27.3)	6 (18.8)
Endocrine (e.g., thyroid)	4 (19.0)	0 (0.0)	4 (12.5)
Melanoma	2 (9.5)	0 (0.0)	2 (6.3)
Gastrointestinal	6 (28.6)	2 (18.2)	8 (35.0)
Germ cell (i.e., testicular)	2 (9.5)	3 (27.3)	5 (15.6)
Hematologic	4 (19.0)	3 (27.3)	7 (21.9)
Time since Dx, months, mean (SD)/range	39.67 (14.32)/16–65	46.1 (16.9)/23–77	41.9 (15.3)/16–77
Time since Tx completion, months, mean (SD)/range	30.24 (15.73)/3–55	25.0 (13.6)/7.6–57.2	28.44 (15.02)/3–57.2
Treatments, N (%)
Chemotherapy (N = 32)	14 (66.6)	11 (100.0)	25 (78.3)
Radiation (n = 31)	5 (23.8)	8 (72.7)	13 (40.6)
Hormonal treatment (n = 26)	5 (23.8)	3 (27.3)	8 (25)
Surgery (n = 30)	16 (76.2)	9 (81.8)	25 (78.1)
Radioactive iodine (n = 26)	4 (19.0)	2 (18.2)	6 (18.8)
Immunotherapy (n = 27)	5 (23.8)	2 (18.2)	7 (21.8)
Other: bone marrow transplant	0 (0.0)	1 (9.1)	1 (3.1)
Experienced a cancer recurrence (n = 31), N (%)	2 (9.5)	2 (18.2)	4 (12.5)
Symptoms and symptom self-efficacy, mean (SD)/range
PROMIS depression	53.8 (8.5)/(38.2–63.9)	49.1 (6.4)/(38.2–55.9)	52.2 (9.1)/(38.2–63.9)
PROMIS anxiety	59.0 (8.9)/(37.1–70.8)	49.4 (5.7)/(37.1–58.4)	55.7 (9.1)/(37.1–70.8)
PROMIS fatigue	52.1 (10.9)/(33.1–77.8)	47.1 (7.4)/(33.1–58.5)	50.4 (10.0)/33.1–77.8
Pain severity score	2.2 (2.1)/(0.0–8.0)	0.6 (1.0)/(0.0–2.8)	1.6 (1.9)/(0.0–8.0)
Worst pain in the last week	3.7 (2.8)/(0.0–9.0)	1.3 (1.9)/(0.0–5.0)	2.8 (2.7)/(0.0–9.0)
Least pain in the last week	1.5 (2.0)/(0.0–8.0)	0.1 (0.3)/(0.0–1.0)	1.0 (1.8)/(0.0–8.0)
Average pain the last week	2.3 (2.2)/(0.0–8.0)	0.6 (1.0)/(0.0–3.0)	1.7 (2.0)/(0.0–8.0)
Current pain level	1.7 (2.2)/(0.0–8.0)	0.4 (0.9)/(0.0–3.0)	1.2 (1.9)/(0.0–8.0)
Pain interference score	2.2 (2.4)/(0.0–10.0)	1.2 (2.1)/(0.0–6.0)	1.9 (2.3)/(0.0–10.0)
Self-efficacy for chronic disease	7.3 (1.6)/(4.3–10.0)	8.0 (1.5)/(4.33–10.0)	7.5 (1.6)/(4.3–10.0)
PROMIS self-efficacy	51.5 (7.3)/(34.6–62.1)	56.0 (7.5)/(44.6–62.1)	53.1 (7.6)/(34.6–62.1)

^a Indicated by patient in addition to employer insurance.

CHIP, Children's Health Insurance Program; Dx, diagnosis; PROMIS, Patient-Reported Outcomes Measurement Information System; SD, standard deviation; Tx, treatment.

Providers (N = 11) were M = 42.6 years old and primarily white (90.9%), non-Hispanic (100%), and female (81.8%). Most were medical doctors (90.9%) and had been practicing for M = 12.2 years. Providers treated cancers matching those of survivor participants: breast (18.2%), endocrine (e.g., thyroid: 9.1%), gastrointestinal (18.2%), hematologic (9.1%), germ cell (i.e., testicular: 9.1%; ovarian: 18.2%) cancers or melanoma (18.2%). M = 15.2% (range 4%–30%) of their patient population was aged 18–39.

Quantitative data

Survivors' symptom ratings are presented in Table 1. Fifty percent of YAs endorsed clinically significant levels of pain (i.e., worst pain in the last week ≥3/10). Almost half reported elevated (i.e., t-scores ≥½ standard deviation above the mean) depressive (47%) and/or anxiety (47%) symptoms, and 34% reported elevated fatigue. Table 2 presents survivors' and providers' rankings of post-treatment concerns. Close to one-third of survivors (31.3%) ranked emotional stress/distress as their primary concern, followed by fatigue (15.6%) and pain (12.5%). Pain, fatigue, or emotional stress/distress was ranked as the primary or secondary concern by ∼91% of survivors. Just under half of providers ranked fatigue (36.4%) or pain (9.1%) as the primary post-treatment concern for their patients, with pain, fatigue, or emotional stress/distress ranked as the primary or secondary concern by ∼81% of providers.

Table 2.

Survivor and Provider Concerns

	Providers	Survivors
	Phase I development interviews (N = 11)	Total (N = 32)
Primary concerna	• Fatigue (n = 4, 36.4%) • Recurrence (n = 3, 27.3%) • Pain: (n = 1, 9.1%) • Return to work/school (n = 1, 9.1%) • Peer relationships (n = 1, 9.1%) • Family relationships (n = 1, 9/1%)	• Emotional stress/distress (n = 10, 31.3%) • Fatigue (n = 5, 15.6%) • Pain (n = 4, 12.5%) • Fertility (n = 4, 12.5%) • Return to work/school (n = 2, 6.3%) • Cognitive problems (n = 2, 6.3%) • Sleep problems (n = 1, 3.1%) • Finances (n = 1, 3.1%) • Romantic relationships (n = 1, 3.1%) • Tearing organ scars open (n = 1, 3.1%) • Future health issues from treatment (n = 1, 3.1%)
Second concerna	• Emotional stress/distress (n = 7, 63.6%) • Return to work/school (n = 2, 18.2%) • Fatigue (n = 1, 9.1%) • Cognitive problems (n = 1, 9.1%)	• Fatigue (n = 11, 34.4%) • Emotional distress/stress (n = 4, 12.5%) • Sexual problems (n = 4, 12.5%) • Pain (n = 3, 9.4%) • Finances (n = 2, 6.3%) • Sleep problems (n = 1, 3.1%) • Fertility (n = 1, 3.1%) • Return to work/school (n = 1, 3.1%) • Family relationships (n = 1, 3.1%) • Romantic relationships (n = 1, 3.1%) • Physical appearance (n = 1, 3.1%) • Hair growth/strength (n = 1, 3.1%)
Third concerna	• Emotional stress/distress (n = 2, 18.2%) • Fatigue (n = 2, 18.2%) • Sleep problems (n = 2, 18.2%) • Sexual problems (n = 2, 18.2%) • Finances (n = 1, 9.1%) • Return to work/school (n = 1, 9.1%) • Family relationships (n = 1, 9.1%)	• Finances (n = 6, 18.8%) • Pain (n = 5, 15.6%) • Emotional stress/distress (n = 4, 12.5%) • Fertility (n = 2, 6.3%) • Return to work/school (n = 2, 6.3%) • Romantic relationship (n = 2, 6.3%) • Sexual problems (n = 2, 6.3%) • Cognitive problems (n = 2, 6.3%) • Weight (n = 2, 6.3%) • Fatigue (n = 1, 3.1%) • Sleep problems (n = 1, 3.1%) • Family relationships (n = 1, 3.1%)

^a Due to missing data, percentages may not equal 100.

Significant positive correlations were found between depression, anxiety, fatigue, and pain severity (rs = 0.39 to 0.76; ps < 0.05; Table 3). Participants with greater self-efficacy for managing chronic disease experienced fewer symptoms of depression, anxiety, and fatigue and lower pain severity and interference (rs = −0.45 to −0.56; ps < 0.05). Those with greater self-efficacy for managing symptoms experienced fewer symptoms of depression, anxiety, and fatigue and less pain interference (rs = −0.37 to −0.62; ps < 0.05).

Table 3.

Bivariate Correlations Between Symptoms and Symptom Self-Efficacy for Total Sample of Survivor Participants (N = 32)

	PROMIS depression	PROMIS anxiety	PROMIS fatigue	Pain severity	Pain interference	Self-efficacy for chronic disease	PROMIS self-efficacy
PROMIS depression	1.00
PROMIS anxiety	0.76**	1.00
PROMIS fatigue	0.53**	0.47**	1.00
Pain severity	0.49**	0.54**	0.39*	1.00
Pain interference	0.25	0.22	0.26	0.70**	1.00
Self-efficacy for chronic disease	−0.52**	−0.56**	−0.46**	−0.46**	−0.45*	1.00
PROMIS self-efficacy	−0.53**	−0.58**	−0.62**	−0.28	−0.37*	0.78**	1.00

^* p ≤ 0.05; ^**p ≤ 0.01.

Results confirmed that an intervention targeting multiple symptoms that are highly correlated (i.e., pain, fatigue, and emotional distress) as well as aiming to improve participants' self-efficacy for symptom management may be particularly beneficial for YAs.

Phase I: Intervention development interviews

Need for the proposed intervention: Symptom experience of YAs

Survivors' qualitative data highlighted post-treatment pain, fatigue, and emotional distress. Symptoms served as reminders of their cancer and contributed to feelings of anger, anxiety, and low mood. Some survivors expressed resignation around the persistence of symptoms. Survivors also endorsed increased irritability and a “shorter fuse,” which impacted their relationships with friends, family, and their children. Those experiencing fatigue described it as having both a mental and physical component, with stress being associated with greater fatigue. Physical activity and adequate sleep were associated with lower fatigue. Survivors acknowledged a sense of grief/loss about life areas (e.g., biological parenthood, changing careers) that had changed or were different than they had hoped/planned.

Providers' qualitative data pointed to pain, fatigue, and distress as common post-treatment symptoms for YAs. Providers acknowledged that symptoms such as fatigue may be persistent. They reflected that post-treatment symptoms can contribute to additional distress as symptoms may last longer than survivors anticipate, interfere with important life areas (e.g., work/school, raising children, relationships), or are perceived as signs of cancer recurrence.

Figure 1 presents unique and common factors contributing to distress for YA survivors as reported by YAs and oncology providers.

FIG. 1.

Factors contributing to post-treatment distress among YA survivors as reported by survivors and providers. YA, young adult.

Symptom management strategies

YA survivors shared about strategies to cope with and manage post-treatment symptoms. Several endorsed the importance of social support, describing talking to other young cancer survivors (e.g., through chat rooms or support groups), communicating their needs for emotional and instrumental support, and receiving support from friends and family as beneficial. They also described value in communicating with their medical team about their symptoms for addressing and understanding the source and trajectory of their symptoms. Physical activity was endorsed as beneficial for coping with pain, fatigue, and distress.

Some YAs described a shift in what was meaningful to them and a desire to spend time on meaningful goals even if it meant approaching goals in a new way to accommodate symptoms. Some described value in focusing on the present moment and taking a day-by-day approach to achieving goals, while others endorsed activity pacing, self-compassion (e.g., giving themselves permission to take breaks), positive self-talk, meditation, and having a routine as valuable ways to manage symptoms in the service of working toward goals. In addition to providing a sense of accomplishment, working to accomplish goals distracted them from symptoms.

Providers recommended both medical and behavioral symptom management strategies. Medical management involved pharmacologic strategies (e.g., psychotropic medications, hormone replacement therapy, pain medications), counseling survivors early and often about possible side effects/symptoms, and referring to specialists to address specific symptoms (e.g., physical therapy for lymphedema, palliative care for pain management). Recommended behavioral symptom management strategies included normalizing and validating patients' symptom experiences, activity pacing, encouraging physical activity and a healthy diet, helping patients better utilize their support networks, providing strategies for communicating with providers, and encouraging relaxation.

Utility of the intervention and feedback on intervention structure/format

Survivors and providers were in support of developing a tailored behavioral program for YAs to address post-treatment symptoms. Both described value in a program that addressed symptoms without the need for additional medications. Survivors felt that a group-based program for YAs would provide the opportunity to meet other young survivors who understood their experiences and may be particularly beneficial for YAs who do not have a strong support network. The group format was also noted as providing the opportunity to normalize the shared experience of post-treatment symptoms and to model symptom management strategies. YAs recommended keeping the group size small to increase participants' comfort with contributing.

Due to the COVID-19 pandemic, YAs were asked for their opinions about a Zoom-based intervention. Although some preferred an in-person intervention, all were open to receiving a symptom management intervention over Zoom. They acknowledged that this delivery format may reduce participation barriers (e.g., travel time/distance, parking/transportation costs) and be particularly beneficial for YAs with high symptom burden.

Providers echoed survivors' comments regarding the utility of a group-based intervention for helping to normalize and reduce stigma around post-treatment symptoms and provide peer support. They felt that a group format would allow survivors to learn from one another in an environment with those who understood their experiences.

All participants were informed that the intervention may include a complementary mobile application and were provided with a brief description. YAs and providers had an overwhelmingly positive response regarding the inclusion of a mobile application to reinforce content delivered during intervention sessions and provide access to symptom management strategies “on the go.” Survivors acknowledged that it would be helpful to be able to ask questions of the study team and chat with other group members within the application.

Barriers to intervention participation

Multiple potential barriers to intervention participation were noted by participants. These barriers included the following: (1) competing health care-related demands for patients who were in the midst of treatment; (2) time/distance required to attend in-person sessions; (3) differences in group members' experiences that may impact their ability to relate to one another (e.g., differing cancer types, treatment histories, ages, or prognoses); (4) inconsistent or limited access to the internet or Smartphone/tablet needed to access videoconferencing sessions or the mobile application; (5) the mobile application not being compatible with Android or iPhone operating systems; and (6) other competing demands (work/school/childcare). Consideration of these barriers when developing the prototype intervention was necessary to ensure creation of an accessible intervention to address post-treatment symptoms.

Prototype intervention

Table 4 outlines how information obtained during Phase I intervention development interviews informed the prototype intervention. An eight-session, group-based, symptom management intervention was developed (Table 5). The intervention combined behavioral symptom coping skills (e.g., activity–rest cycling, relaxation training, assertive communication) and home-based physical activity (i.e., cardiovascular, strength and resistance training) with strategies from Acceptance and Commitment Therapy (ACT; e.g., cognitive defusion, working toward values),⁶⁸ strategies to foster self-compassion^69,70 (e.g., loving kindness meditations), and Meaning-Centered Psychotherapy^71,72 (MCP; e.g., building meaning, focusing on the legacy you live and give). Content area experts (e.g., ACT: J.P.V.; MCP: J.G.W.; physical activity: C.E. and K.M.) were consulted to ensure appropriate adaption of intervention skills to the patient population and the development of a physical activity protocol that considered survivors' post-treatment needs. The intervention was designed to occur over Zoom over 10 weeks (sessions 1–6: weekly; sessions 7–8: biweekly).

Table 4.

Feedback from Intervention Development Interviews and Ways Feedback Informed the Prototype Intervention

Theme	Participant comments	Intervention considerations
Need for the proposed intervention: symptom experience of YAs	1. Post-treatment pain, fatigue, and emotional distress are common and serve as reminders of cancer and contribute to additional distress	• Include cognitive defusion strategies to become unhooked from thoughts and continue on the path toward valued and meaningful activities
	2. Experience of grief/loss about areas of life that had changed or were different than they had hoped/planned	• Include strategies to build meaning and identify and work toward the legacy they would like to live and give to others
	3. Post-treatment symptoms impact YAs' relationships with others	• Help participants identify members of their support network who can provide different types of support (i.e., emotional, task, both), and assist them with matching their support needs with individuals who can best provide the support • Include assertive communication strategies for asking for support and saying no to close others
Symptom management strategies	1. Value of social support for managing symptoms	• Deliver intervention sessions in a group format • Review their support networks and learn how best to communicate (i.e., making requests, saying no) with these individuals to receive support in the service of symptom management (e.g., through assertive communication strategies)
	2. Importance of communicating with the medical team about symptoms and for identifying symptom management strategies	• Include strategies for communicating with the medical team (e.g., “Doc Talk Cards”)
	3. Physical activity as a strategy for coping with pain, fatigue, and emotional distress	• Include a home-based physical activity program and provide participants with wireless activity trackers to increase awareness of physical activity
	4. Changes in prioritization of values and focus on value-consistent meaningful activities	• Include a values clarification exercise to help participants identify and prioritize their values and identify value-consistent goals • Create actionable goals using the SMART framework
	5. Use of activity pacing, self-compassion, relaxation training, meditation, and positive self-talk for managing symptoms in the service of working toward goals	• Include the following symptom management strategies: (1) activity–rest cycling; (2) exercises to build self-compassion; (3) relaxation training/meditations (e.g., progressive muscle relaxation, loving kindness mediation, guided imagery); (4) identifying workable self-talk
Utility of the intervention and feedback on intervention structure/format	1. Value in meeting other young survivors who understood their experience for normalizing and reducing stigma around post-treatment symptoms	• Deliver the intervention in a group format • Provide extra time for participants to have more casual interactions with one another
	2. Importance of keeping the group sizes small to increase comfort with contributing	• Groups will be no larger than five participants led by two group leaders
	3. Positive response to a mobile application to access symptom coping skills on-the-go	• Introduce the mobile application as a way to access skills learned in the group-based sessions on the go and reinforce skill use outside of sessions
	4. Value of being able to chat with group members and group leaders outside of session	• Include a moderated chat function within the mobile application
Barriers to intervention participation	1. Being in the midst of treatment/close to cancer diagnosis	• Eligible participants will have completed primary treatments
	2. Travel distance/time to get to the cancer center with in-person sessions	• Deliver the intervention remotely through Zoom
	3. Differences in group members' experiences due to differences in diagnosis/treatments received, prognosis, and ages/life stages may make it harder for participants to relate to one another	• Address broad topics of relevance to YAs (e.g., communicating with work/school, engaging your support network, communicating with your medical team) • Point out similarities in participants experiences (e.g., symptom experience, follow-up care, etc.) in spite of differences (e.g., cancer and treatment types, age) • Recruit participants at a similar stage of their cancer care (e.g., within 2 years of treatment completion) • Restrict the eligibility to include only those aged 18–39
	4. Not having access to the internet or a Smartphone/Tablet	• Provide YAs with a tablet that includes a data plan to access Zoom calls or mobile application, as necessary
	5. Mobile application only being compatible with Android or iPhone operating systems	• Create a mobile application that operates on both Android and iPhone devices
	6. Competing demands (work/school/childcare) interfering with participation	• Offer the intervention sessions in the evenings, early in the morning, or on weekends • Provide individual make up sessions if a participant has to miss the group

SMART, specific, measurable, achievable, relevant, time-oriented; YA, young adult.

Table 5.

Intervention Outline

Session	Content
1 (weekly)	Physical activity and relaxation for symptom management Progressive muscle relaxation
2 (weekly)	Identifying values and setting SMART goals consistent with values Activity–rest cycling
3 (weekly)	Identifying thoughts that “hook” you Increasing self-compassion Formal loving-kindness meditation
4 (weekly)	Coping with thoughts that “hook” you with distancing strategies and workable self-talk Leaves on a stream exercise
5 (weekly)	Identifying sources of support Assertive communication Informal loving-kindness meditation
6 (weekly)	Communicating with your medical team, workplace, and school Mini-relaxation practices
7 (biweekly)	Meaning making Pleasant imagery practice
8 (biweekly)	Building a legacy (that you live and give) Reviewing and planning to maintain progress

The study team developed printed patient manuals outlining the behavioral symptom management skills and the home-based physical activity protocol, which included a week-by-week cardiovascular (i.e., walking program, walk-to-run program), resistance training, and flexibility program. In conjunction with Pattern Health, a mobile application was developed (Fig. 2) to promote skill use (e.g., session-specific exercises, push notifications with skill-use reminders), allow for accessing intervention content “on-the-go” (e.g., audio recordings of relaxation exercises), and allow for pairing with a wireless activity tracker to track daily activity. The application was designed to be relevant to YA survivors (e.g., ability to chat with group members, inclusion of Spotify playlists to use while exercising).

FIG. 2.

Intervention mobile application.

Informed by the Social Cognitive Theory,^73,74 intervention sessions were designed to promote self-efficacy for symptom management by providing opportunities for modeling, role-plays, self-evaluation, self-monitoring, goal-setting, and receiving feedback from facilitators and group members. The proposed session format was as follows: (1) group socialization (15 minutes); (2) review of home practice and mobile application use (20 minutes); (3) provide education, skills training, and opportunities for skills practice (45 minutes); and (4) assign homework (10 minutes). This format allows for 15 minutes of casual interactions between group members to help them connect with one another. The remainder (75 minutes) of the interactive sessions include didactic, experiential, and group discussion of coping skills presented during the program.

Phase II: User testing sessions

User testers (N = 10) were supportive of the developed intervention. Based on feedback (Table 6), minor changes were made to the patient manuals and mobile application to improve the following: (1) relevance to the population; (2) intervention structure/format/layout/usability; (3) content and use of intervention skills; and (4) the program, more broadly. Feedback also informed how skills were described/introduced in the therapist manual.

Table 6.

Feedback from User Testers and Associated Adaptations to the Intervention and Mobile Application

Theme	Paper intervention materials (N = 5)		Mobile application (N = 5)
	Participant comments	Adaptations	Participant comments	Adaptations
Suggestions for improving relevance to the population	1. Use less formal language 2. Provide additional YA-specific examples when presenting skills 3. Many YAs feel alone in their experience; provide opportunities to normalize their experiences	1. More informal language was used (e.g., skills/strategies vs. exercises) 2. Examples of a change: others in life “don't get it”; YA-relevant example questions to ask your provider about symptoms 3. Added language in the therapist manual normalizing their experiences (e.g., normalize grief over legacy lost or changed); provided additional opportunities for group members to share their experiences	1. Would be nice to “gamify” the app and have components that were more fun and “less clinical” 2. Provide session summaries to help patients who may need to miss the group due to competing responsibilities or for those who have lingering changes to memory	1. Participants receive within-app badges for completing home-practice activities 2. Summaries were created for each of the sessions
Suggestions for improving intervention structure/format/layout/usability	1. Restrict group size to ≤5 participants 2. Provide reminders in the paper manual of ways in which the mobile app can be used to reinforce skills discussed in group	1. Structure the program to have five participants per group 2. Additional reminders about the use of the mobile application were added to the therapist and patient manuals	1. Improve accessibility of intervention strategies 2. Group exercise videos with pictorial descriptions of the exercises 3. Divide links to resources by topic areas 4. Help participants understand differences in the app interface for iPhone and Android operating systems 5. Break text into bullet points	1. Added folders presenting strategies and review of strategies by session number and by topic (e.g., relaxation and meditation exercises) 2. Separate folders were created presenting the videos with their pictorial descriptions 3. Separate folders were created grouping resource links by category (e.g., resources for work and school) 4. Provided information to participants in the group about what to expect based on their phone/Tablet operating system 5. Some text was placed into bullet form rather than paragraph form
Suggestions for improving content and use of intervention skills	1. Did not connect with one of the distancing strategies (i.e., Carry Cards) 2. Not all strategies presented may resonate with every patient 3. Some content was confusing (e.g., biopsychosocial model, monsters on the bus) when participants were not given a full description 4. Provide a clearer link to how skills may map on to one another 5. Provide information about institution-specific resources for YA survivors	1. The Carry Cards strategy was removed 2. Include information in the therapist manual alluding to providing survivors with a menu of coping skills they can choose from 3. Additional text was added to the therapist manual to ensure clear description of the skill or skill rationale 4. Provided a description in the therapist manual of how skills may be linked (e.g., values-based goal setting and building meaning; creating a plan to maintain progress and setting SMART goals; using mini-relaxation practices to manage emotions before communicating with others) 5. Institution-specific resources (e.g., AYA and oncofertility programs) were added	1. Provide push notifications to complete home-practice exercises and other intervention-related tasks 2. Be able to review and edit home practice exercises	1. Push notifications were added at regular intervals to promote home practice 2. Added this the ability to review and edit home practices in a “history” section of the app
Recommendations for improving the program	1. Have the program feel conversational rather than didactic in nature and provide additional opportunities for YAs to learn from one another 2. Limit and define what was expected of participants' home practice	1. Emphasized and added additional opportunities for group discussion around survivors' experiences and skill use 2. Provide additional description of home practice activities and time commitment	1. Change language to reflect actions participants can take to improve symptoms	1. Example of a change: “Connecting with sources of meaning” and “Coping with change in meaning” vs. “Coping with meaning lost”

AYA, adolescent and young adult.

User testers provided information about their thoughts on the utility and strengths of the proposed intervention and intervention materials. Specifically, they echoed comments provided by individuals during Phase I, highlighting the value of being able to connect with other YAs with whom they could relate to due to their shared cancer experience and developmental stage during the program. Participants also described value in integrating symptom coping skills into a group-based intervention as the group format would provide the opportunity to learn from one another about successful symptom management strategies. Individuals reviewing the printed intervention materials found the materials easy to follow, and they described specific components (e.g., call-out boxes) that helped to draw their attention to important concepts and aspects of the intervention.

Individuals reviewing the mobile application acknowledged the application's value in helping to keep intervention content at the front of their minds and as a convenient and readily accessible way to access coping skills “on-the-go.” Individuals reviewing both the printed materials and mobile application described utility in learning actionable symptom coping strategies that were then reinforced through exercises included in intervention materials.

Discussion

Post-treatment symptoms, although common, are often unaddressed for YA survivors. While prior literature suggests that YAs may feel overwhelmed by and ill-prepared to manage these long-term and late effects,⁷⁵ behavioral interventions have failed to target the unique symptom management needs of YAs. The goal of this study was to better understand the symptom experiences of YA survivors and to use this information to develop a behavioral symptom management intervention. Quantitative and qualitative data confirmed that pain, fatigue, and emotional distress were common and highly correlated post-treatment concerns for YAs. In addition, higher symptom burden was associated with lower self-efficacy for symptom management. YAs and providers acknowledged the need for and the benefit of a behavioral symptom management intervention specific to YAs to address pain, fatigue, and emotional distress.

Given the co-occurrence of pain, fatigue, and emotional distress, an eight-session, group-based intervention targeting these symptoms was developed to assist with reducing symptom severity and interference and enhancing self-efficacy for managing symptoms. By engaging both YA survivors and oncology providers in the intervention development, a program was created that resonated with the symptom experiences and needs of YA survivors and allowed for the incorporation of ways survivors might engage their providers to assist with symptom management (e.g., improving symptom communication). YA user testers reviewed the developed intervention, which allowed for further refinement of intervention content, format, and procedures to ensure applicability to YAs.

Despite its strengths (e.g., patient/provider-centered approach to intervention development/refinement), this study has limitations that might affect generalizability. (1) Five of the most common cancers among YAs were represented, which resulted in a heterogeneous sample (e.g., cancer type, treatments received). The developed intervention is broadly applicable to YAs but may not address post-treatment symptoms specific to a particular treatment/disease type. (2) The small sample size and lack of ethnic diversity may further limit generalizability. (3) Most provider participants were medical doctors; thus, the information obtained may not reflect the symptom management perspectives of other health professionals. (4) Finally, user testers participating in phase II reviewed either the printed intervention materials or the mobile application, but not both. This may have skewed feedback obtained from participants.

There are disparities in the care of YA cancer survivors when compared with childhood and older adult survivors and a need for research into the treatment of late effects of cancer, including persistent symptoms.⁷⁶ The present study further elucidates the post-treatment symptom concerns experienced by YAs and adds to the literature through the development of an intervention to address gaps in YAs' symptom management care. The developed intervention will be tested for feasibility and acceptability through a pilot randomized controlled trial.

Authors' Contributions

The article has been approved by all the authors. Conceptualization: C.S.D., R.A.S., T.J.S., K.C.O., J.P.V., J.G.W., K.M., C.E., and F.J.K. Methodology: C.S.D., R.A.S., and K.C.O. Formal analysis: C.S.D. and J.M.S. Funding Acquisition: C.S.D. under the mentorship of K.C.O., R.A.S., F.J.K., and T.J.S. Investigation: C.S.D. and J.M.S. Supervision: R.A.S. and K.C.O. Writing—original draft: C.S.D. and J.M.S. Writing—reviewing and editing: R.A.S., T.J.S., K.C.O., J.P.V., J.G.W., F.J.K., J.M.S., and C.E.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

Dr. Caroline S. Dorfman was supported by a career development award from the National Institutes of Health (K08CA245107).

Supplementary Material

Supplementary Materials