Development of a Novel Psychosocial Intervention to Improve Symptom Management for Adolescents and Young Adults with Advanced or Recurrent Cancer

Abstract

Purpose:

High symptom burden and poor prognosis faced by adolescents and young adults (AYAs; aged 15–29) with advanced or recurrent cancer significantly impact their sense of identity and purpose as they work to achieve developmentally significant goals. The combination of high symptom burden and goal interference may exacerbate suffering, yet palliative care interventions have not addressed the co-occurring symptom management and existential concerns of this population.

Methods:

Guided by the NIH Stage Model, we systematically developed a psychosocial symptom management intervention to address the needs of AYAs with advanced or recurrent cancer. Quantitative and qualitative data were obtained from AYAs (N = 20) and caregivers (N = 13) who completed semi-structured interviews and self-report measures to assist with intervention development of refinement. Rapid qualitative analysis was used.

Results:

Intervention development interviews confirmed high symptom burden and the need to develop a psychosocial symptom management intervention targeting this population. A four-session intervention (“SMILE: Symptom Management for Improved PhysicaL and Emotional Wellbeing”) was developed integrating behavioral symptom coping strategies with strategies from Meaning-Centered Psychotherapy and Acceptance and Commitment Therapy to (a) reduce symptom burden and interference and (b) promote engagement in values-driven, meaningful action in the face of life-limiting illness. Refinement sessions assisted with further clarifying concepts, tailoring the intervention to the population, and honing protocols.

Conclusions:

SMILE is a novel integration of three evidence-based approaches to provide AYAs skills to address symptoms that interfere with valued and meaningful action. The feasibility and acceptability of SMILE will next be examined in a pilot randomized controlled trial.

Keywords

intervention development symptom management adolescent and young adult palliative care advanced cancer recurrent cancer

Introduction

In the United States, >30,000 adolescents and young adults (AYAs) aged 15–29 are diagnosed with cancer annually.^1,2 Improvements in morbidity and mortality outcomes for AYAs have lagged behind those for younger pediatric and older adult patients with cancer, and AYAs are more likely to present with advanced disease, have more aggressive tumors, and have worse prognosis.^3–9 As a result, AYAs often have high symptom burden (e.g., pain, fatigue, emotional distress), with >90% endorsing distressing symptoms during treatment and nearly half experiencing ≥3 symptoms.^10–12 These symptoms are often interrelated and co-occur,^13–15 with patients reporting a median of four symptoms toward the end-of-life.¹⁵

For AYAs, the diagnosis of cancer occurs in the early stages of adult life, a critical developmental period when they are working to achieve complex, age-related goals such as completing their education, building their career, and fostering relationships.^16–19 AYAs may experience changes in identity and life purpose as the goals they had been pursuing are made more difficult or impossible by their diagnosis, treatment, symptom burden, and poor prognosis. The age-related challenges of AYAs with cancer are particularly pronounced for those with advanced disease. In an effort to prolong life, AYAs with advanced cancer often choose aggressive treatments that result in additional side effects and lower quality of life.²⁰ They must cope with high symptom burden and living with a life-limiting illness while their peers are establishing autonomy and building their futures. In contrast, AYAs with advanced cancer often experience a loss of independence as they increasingly rely on others for physical, emotional, and financial support,²¹ and assistance with symptom management.^22,23 The combination of high symptom burden and challenges to achieving developmental milestones may exacerbate suffering,^24,25 yet the unique, age-related needs of AYAs with advanced cancer often go unrecognized.

It is recommended^26–28 that AYAs with advanced cancer have routine access to palliative care interventions to assist with symptom management and improving quality of life.^29,30 However, AYAs are underserved in palliative care, and the integration of palliative care with standard treatment remains suboptimal for AYAs.^13,27 Adult palliative care services primarily treat older patients; thus, most psychosocial symptom management interventions have been tested among patients aged ≥ 40.^31–34 Pediatric palliative care services are often focused on patients aged < 15;^22,27 providers may be less familiar and/or comfortable delivering services to AYAs, and referral to palliative care for AYA patients remains low.²⁸ To address this gap, AYA-specific palliative care interventions are needed to facilitate symptom management and target the unique needs of this population.

Informed by the NIH Stage Model,³⁵ our objective was to systematically develop and refine the first psychosocial intervention targeting the unique symptom management needs and existential concerns of AYAs with advanced or recurrent cancer. It was hypothesized that an intervention integrating traditional behavioral symptom management strategies with key skills and concepts from two evidence-based therapies, Meaning-Centered Psychotherapy (MCP)^33,36,37 and Acceptance and Commitment Therapy (ACT),^38,39 would be beneficial.^12,40,41 Traditional behavioral symptom coping strategies, such as relaxation training and activity pacing, are widely accepted within palliative care as efficacious^42–47 but are still relatively novel within AYA oncology and may be valuable tools for promoting self-management of physical and emotional symptoms. Both MCP and ACT have been associated with decreased distress and symptom burden and improved quality of life among patients with cancer, including those with advanced cancer,^{37,45,48–53} though their use among AYAs with advanced cancer has also been limited. Concepts from MCP and ACT are complementary in their focus on engagement in values-congruent meaningful action. MCP^33,36,37,50 focuses on identifying sources of meaning in one’s life and working to actively engage with and build meaning. ACT^38,39 involves techniques to gain helpful perspective on uncomfortable thoughts and physical and emotional experiences rather than working to change their content or frequency to allow for flexible movement toward value-congruent, meaningful action. By incorporating questions from MCP to help patients identify valued and meaningful life areas impacted by symptoms along with training in traditional behavioral symptom coping strategies and ACT-based strategies to promote self-management of symptoms and psychological flexibility, it was our hope that the intervention would assist AYAs with better navigating symptoms to allow for continued movement toward important and developmentally relevant goals in the face of life-limiting illness. To date, no intervention of this kind has been developed.

Methods

Setting and participants

Duke University Institutional Review Board approval was obtained. Participants were recruited between January and August 2023 and identified using electronic health records from a comprehensive cancer center and an affiliated children’s hospital. AYAs and/or their parent or guardian (if aged <18) were sent a letter via mail or message in the electronic health system introducing the study and then contacted via phone. AYAs were asked for permission to contact their primary caregiver to approach for participation.

Eligibility criteria for AYAs included: (1) age ≥ 15 and ≤29; (2) diagnosed with advanced (i.e., incurable cancer or distant metastases) or recurrent cancer; and (3) able to speak/read English. Eligible caregivers were (1) aged ≥ 18; and (2) able to speak/read English. Exclusion criteria for all participants included active serious mental illness or visual, hearing, or cognitive impairment that would interfere with participation. All participants aged ≥ 18 provided written informed consent. Parents/guardians of AYAs aged < 18 provided written informed consent, with the AYA providing written assent.

Intervention development

Recruitment letters/messages were sent to N = 53 AYAs, with n = 42 (79.2%) screened for eligibility (Fig. 1a). Of these, n = 17 (40.5%) consented. Among those who consented, n = 15 (88.2%) participated in intervention development interviews. Two individuals consented but did not complete interviews, though each completed the self-report surveys. N = 18 caregivers were approached (Fig. 1b), and n = 16 (88.8%) were screened for eligibility. Of these, n = 13 (81.3%) consented, with n = 11 (84.6%) completing interviews and n = 2 (15.4%) being lost to follow-up after completing the self-report surveys.

FIG. 1.

Study flow diagrams.

Intervention development interviews were conducted via videoconferencing in a group (three patient groups with n = 2 patients per group; one caregiver group with n = 3 caregivers) or individual (n = 6 patients; n = 5 caregivers) format to accommodate preferences and scheduling needs. Three interviews were conducted with patient–caregiver dyads (one dyad per interview). Semi-structured interview guides were used. Participants shared about AYAs’ symptom concerns, symptom management experiences, the role of caregivers in symptom management, and perceptions of a psychosocial symptom management intervention for AYAs (e.g., need for the intervention, barriers/facilitators to participation). To gauge the utility of including strategies from ACT and MCP in the intervention, participants were also asked about the impact of cancer and cancer-related symptoms on their abilities to engage in developmentally relevant values-consistent goals and sense of meaning. Interviews were ∼60 minutes, audio/video-recorded, and transcribed. Participants were compensated $20.

Intervention refinement

A second group of AYAs with advanced or recurrent cancer (N = 11) was approached to review the prototype intervention materials (Fig. 1c). Of those reached, 42.8% (n = 3) consented and completed the intervention refinement session. Prior to each session, participants were mailed paper copies of the prototype patient manual. AYAs were asked to provide input on intervention content, presentation (e.g., look/feel of the materials), relevance of content to AYAs with cancer, and study procedures. The ∼60-minute sessions were conducted using videoconferencing, audio/video recorded, and transcribed. Participants were compensated $20.

Study measures

AYA and caregiver participants completed an electronic assessment comprised of self-report questionnaires to assess sociodemographic and medical variables and evaluate key psychosocial and symptom management domains. For AYAs, the assessment included measures of symptom burden [Patient Reported Outcome Measurement System (PROMIS) Depression, Anxiety, and Fatigue Computer Adaptive Tests⁵⁴]; pain severity and interference (Brief Pain Inventory-Short Form⁵⁵); self-efficacy for symptom management (6-item Self-Efficacy for Managing Chronic Disease Scale⁵⁶); meaning/peace and faith (Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale^57,58); and psychological flexibility (Acceptance and Action Questionnaire-II⁵⁹). Caregivers completed measures assessing their perceptions of their AYA’s self-efficacy and their own self-efficacy in supporting their AYA’s symptom management (adapted versions of the 6-item Self-Efficacy for Managing Chronic Disease Scale⁵⁶). Each measure had good internal consistency reliability (αs = 0.798–0.983). See Supplementary Data for measure details.

Analytic strategy

Descriptive statistics (e.g., mean, percent) were used to characterize the sample. Rapid qualitative analysis (RQA) was used to analyze interview data and responses from intervention refinement sessions.^60,61 RQA has been recommended for use in intervention development as it provides a quick, systematic approach for analyzing qualitative data^62,63 while allowing for the identification of intervention elements and barriers/facilitators of a program⁶⁴ without sacrificing validity. Interview and refinement sessions were summarized by two study team members (B.H., N.A.A.) using standardized templates derived from the semi-structured interview guides. ∼24% of transcripts were analyzed by both team members; the team members, along with the study PI (C.S.D.), met regularly to ensure consistency and reconcile discrepancies in interpretation between team members prior to team members analyzing transcripts independently. The summaries were then transferred into a matrix (participant by domain) to create an at-a-glance summary of key information, examine the breadth and depth of responses, and allow for easy identification of similarities, differences, and trends in responses.⁶⁵ Responses from interview participants were used to develop the prototype intervention, and feedback obtained during the refinement sessions informed subsequent updates to the intervention.

Results

20 AYAs (n = 17 intervention development; n = 3 intervention refinement) participated (Table 1). AYAs were M = 23.4 years old (range = 15–29). The majority identified as White/Caucasian (n = 16, 80%), non-Hispanic (n = 19, 95%), and female (n = 13, 65%). Cancer types varied across participants. Two AYAs had been diagnosed with >1 cancer, and 55% (n = 11) experienced a recurrence. The average time since last treatment was 4.66 weeks (SD = 11.00). Symptom burden was high, with 70% (n = 14) endorsing at least one significant symptom (i.e., worst pain in last week ≥ 4; PROMIS depression, anxiety, or fatigue score ≥ 55). Among those endorsing significant symptoms, the mean number of symptoms was 2.5 (SD = 1.09). Self-efficacy for symptom management was moderate (M = 6.52/10, SD = 2.61).

Table 1.

Sociodemographic and Medical Characteristics and Symptoms Experienced by AYA Participants by Study Phase (N = 20)

Variables	Phase I	Phase II	Total (N = 20)
Variables	Intervention development (N = 17)	Intervention refinement (N = 3)	Total (N = 20)
Age [mean (SD)/range]	23.47 (4.03)/15–29	23.00 (4.36)/18–26	23.40 (3.97)/15–29
Race [N (%)]
Black or African American	4 (23.5%)	0 (0.0%)	4 (20.0%)
White/Caucasian	13 (76.5%)	3 (100.0%)	16 (80.0%)
Ethnicity [N (%)]
Hispanic	1 (5.9%)	0 (0.0%)	1 (5.0%)
Not Hispanic	16 (94.1%)	3 (100.0%)	19 (95.0%)
Gender [N (%)]
Male	13 (76.5%)	0 (0.0%)	13 (65.0%)
Female	4 (23.5%)	3 (100.0%)	7 (35.0%)
Education [N (%)]
Some high school	4 (23.5%)	0 (0.0%)	4 (20.0%)
Completed high school	3 (17.6%)	1 (33.3%)	4 (20.0%)
Some college, vocational, or training school	5 (29.4%)	1 (33.3%)	6 (30.0%)
Associate degree	0 (0.0%)	1 (33.3%)	1 (5.0%)
College graduate	4 (23.5%)	0 (0.0%)	4 (20.0%)
Some graduate work	1 (5.9%)	0 (0.0%)	1 (5.0%)
Employment status [N (%)]
Part-time student	1 (5.9%)	0 (0.0%)	1 (5.0%)
Full-time student	3 (17.6%)	0 (0.0%)	3 (15.0%)
Working full-time	7 (41.2%)	0 (0.0%)	7 (35.0%)
Unemployed	2 (11.8%)	2 (66.7%)	4 (20.0%)
Disability	1 (5.9%)	1 (33.3%)	2 (10.0%)
Other (applying for disability and working for family)	1 (5.9%)	0 (0.0%)	1 (5.0%)
Unknown	2 (11.8%)	0 (0.0%)	2 (10.0%)
Living arrangements
Live alone	1 (5.9%)	0 (0.0%)	1 (5.0%)
With parents	8 (47.1%)	1 (33.3%)	9 (45.0%)
With partner	6 (35.3%)	1 (33.3%)	7 (35.0%)
With roommates	2 (11.8%)	1 (33.3%)	3 (15.0%)
Health insurance [N (%)]
Yes	16 (94.1%)	3 (100.0%)	19 (95.0%)
No	1 (5.9%)	0 (0.0%)	1 (5.0%)
Type of health insurance [N (%)]^a
Parent’s Insurance	9 (52.9%)	1 (33.3%)	10 (50.0%)
Employer/former employer	5 (29.4%)	0 (0.0%)	5 (25.0%)
Medicaid/CHIP/government assistance	3 (17.6%)	2 (66.7%)	5 (25.0%)
Another government assistance plan (e.g., Social Security Disability)	1 (5.9%)	0 (0.0%)	1 (5.0%)
Cancer type [N (%)]^a
Breast	0 (0.0%)	2 (66.7%)	2 (10.0%)
Endocrine (e.g., thyroid)	2 (11.8%)	0 (0.0%)	2 (10.0%)
Gastrointestinal (e.g., colorectal)	3 (17.6%)	0 (0.0%)	3 (15.0%)
Hematological (e.g., leukemias, lymphomas)	3 (17.6%)	0 (0.0%)	3 (15.0%)
Testicular	2 (11.8%)	0 (0.0%)	2 (10.0%)
Sarcoma	4 (23.5%)	0 (0.0%)	4 (20.0%)
Brain and spinal cord	3 (17.6%)	1 (33.3%)	4 (20.0%)
Lung	2 (11.8%)	0 (0.0%)	2 (10.0%)
Other (i.e., liver and bone, single cell carcinoma)	0 (0.0%)	2 (33.3%)	2 (10.0%)
Time since diagnosis (months) [mean (SD)/range] (n = 19)	40.54 (33.88)/1.76–123.62	17.46 (6.57)/12.81–22.1	38.11 (32.80)/1.76–123.62
Time since most recent treatment (weeks) [mean (SD)/range] (n = 19)	5.26 (11.95)/0.05–48.05	1.39 (0.35)/ 0.99–1.65	4.66 (11.00)/0.05–48.05
Treatments [N (%)]^a
Chemotherapy	14 (82.4%)	3 (100.0%)	17 (85.0%)
Radiation	12 (70.6%)	2 (66.7%)	14 (70.0%)
Surgery	12 (70.6%)	2 (66.7%)	14 (70.0%)
Radioactive iodine	1 (5.9%)	0 (0.0%)	1 (5.0%)
Immunotherapy	4 (23.5%)	1 (33.3%)	5 (25.0%)
Hormone therapy	0 (0.0%)	2 (66.7%)	2 (10.0%)
Other: Clinical trial medication	1 (5.9%)	0 (0.0%)	1 (5.0%)
Experienced a cancer recurrence [N (%)]	9 (52.9%)	2 (66.7%)	11 (55.0%)
Symptoms and symptom self-efficacy [mean (SD)/range]
PROMIS depression	50.97 (7.67)/34.2–64.8	59.97 (6.21)/53.3–65.6	52.32 (8.03)/34.2–65.6
PROMIS anxiety	52.35 (10.71)/32.9–69.4	63.9 (6.54)/56.5–68.9	54.08 (10.91)/32.9–69.4
PROMIS fatigue	50.45 (11.10)/31.3–73.9	67.9 (6.81)/60.5–73.9	53.07 (12.22)/31.3–73.9
BPI Pain Severity Score (n = 18)	1.45 (1.66)/ 0–5.5	4.00 (1.75)/2.25–5.75	1.88 (1.89)/ 0–5.75
BPI worst pain in the last week (n = 18)	2.87 (2.59)/0–7	6.33 (2.89)/3–8	3.44 (2.87)/0–8
BPI least pain in the last week (n = 18)	0.73 (1.16)/ 0–3	1.33 (0.58)/1–2	0.83 (1.10)/0–3
BPI average pain the last week(n = 18)	1.40 (1.81)/ 0–6	4.67 (2.31)/2–6	1.94 (2.09)/0–6
BPI current pain level (n = 18)	0.80 (1.70)/0–6	3.67 (3.06)/1–7	1.28 (2.16)/0–7
BPI Pain Interference Score (n = 19)	2.12 (2.37)/0–7.43	6.52 (2.31)/3.86–8.00	2.81 (2.83)/0–8
Symptom self-efficacy (n = 19)	7.18 (2.24)/2–10	3.00 (1.26)/1.83–4.33	6.52 (2.61)/1.83–10
Other relevant variables
AAQ-II Psychological flexibility (n = 18)	15.33 (6.35)/7–28	16.00 (6.23)/12–24	15.44 (6.24)/7–28
FACIT Meaning/peace (n = 18)	22.99 (5.14)/16–32	15.00 (4.58)/11–20	21.66 (5.80)/11–32
FACIT Faith (n = 18)	9.53 (5.70)/1–16	14.00 (2.00)/12–16	10.28 (5.50)/1–16
FACIT Spiritual well-being total (n = 18)	32.52 (10.09)/18–48	29.00 (2.65)/27–32	31.94 (9.30)/18–48

Participants indicated more than one response.

CHIP, Children's Health Insurance Program; PROMIS, Patient Reported Outcome Measurement; AYA, adolescent and young adult; BPI, Brief Pain Inventory; AAQ-II, Acceptance and Action Questionnaire II; FACIT, Functional Assessment of Chronic Illness Therapy.

Caregivers (N = 13; Table 2) were M = 49.4 years old (range = 26–61), and the majority were White/Caucasian (n = 9, 69.2%), non-Hispanic (n = 12, 92.3%), and female (n = 10, 76.9%). Caregivers were AYAs’ parent (n = 11, 84.6%) or spouse/partner (n = 2, 15.4%). Most caregivers were residing with the patient all (n = 10, 76.9%) or some (n = 2, 15.4%) of the time. Caregivers’ self-efficacy for helping the AYA manage symptoms was moderate (M = 5.85/10, SD = 2.59) and slightly lower than their perception of their loved one’s own symptom management self-efficacy (M = 6.08/10, SD = 2.87).

Table 2.

Caregiver Sociodemographic Characteristics and Medical Information about Their Loved One (N = 13)

Variables	Phase I
Variables	Intervention development (N = 13)
Age [mean (SD)/range]	49.38 (11.41)/26–61
Race [N (%)]
Black or African American	2 (15.4%)
White/Caucasian	9 (69.2%)
Native Hawaiian or other Pacific Islander	1 (7.7%)
Unknown	1 (7.7%)
Ethnicity [N (%)]
Not Hispanic	12 (92.3%)
Unknown	1 (7.7%)
Gender [N (%)]
Male	3 (23.1%)
Female	10 (76.9%)
Education [N (%)]
Grade school—between 1 and 8 years	1 (7.7%)
Completed high school	2 (15.4%)
Some college, vocational, or training school	3 (23.1%)
Associate degree	2 (15.4%)
College graduate	2 (15.4%)
Some graduate work	1 (7.7%)
Graduate degree	2 (15.4%)
Employment status [N (%)]
Full-time student	1 (7.7%)
Working full-time	9 (69.2%)
Full-time homemaker or family caregiver	1 (7.7%)
Disability	1 (7.7%)
Other (business owner)	1 (7.7%)
Relationship with patient
Parent	11 (84.6%)
Spouse/partner	2 (15.4%)
Reside with the patient
No	1 (7.7%)
Yes, all the time	10 (76.9%)
Yes, some of the time	2 (15.4%)
Cancer type [N (%)]^a
Gastrointestinal (e.g., colorectal, liver)	3 (23.1%)
Hematological (e.g., leukemias, lymphomas)	2 (15.4%)
Testicular	1 (7.7%)
Sarcoma	4 (30.8%)
Brain and spinal cord	2 (15.4%)
Other (i.e., pancreatic neuroendocrine tumor, malignant epithelioid neoplasm)	2 (15.4%)
Time since Dx (months) [mean (SD)/range]	39.93 (37.50)/3.05–135.9
Treatments received by AYA [N (%)]^a
Chemotherapy	11 (84.6%)
Radiation	7 (53.8%)
Surgery	9 (69.2%)
Immunotherapy	4 (30.8%)
Other (e.g., stem cell transplant, targeted gene therapy)	3 (23.1%)
Experienced a cancer recurrence [N (%)]	10 (76.9%)
Self-efficacy measures
Self-efficacy for helping the patient manage symptoms	5.85 (2.59)/1–8.83
Perceptions of patient’s symptom management self-efficacy	6.08 (2.87)/1–10

Participants indicated more than one response.

AYA, adolescent and young adult; Dx, diagnosis.

Intervention development

N = 15 AYAs and N = 11 caregivers completed intervention development interviews. Four domains (Table 3) were assessed, including (1) symptom (i.e., physical and emotional) burden; (2) symptom impact; (3) symptom management strategies; and (4) intervention preferences.

Table 3.

Qualitative Findings from Intervention Development Interviews and Information Guided the Intervention Content and Format

Domains	AYA participant responses (N = 15)	Caregiver responses (N = 11)	Intervention content/format
A. Symptom burden
1. Physical symptom burden experienced by AYA participants or the caregiver’s loved one	Pain was a common symptom experienced prior to diagnosis, which generally decreased in severity once treatment began. Pain persisted for many and flared with overactivity. Increased fatigue and low energy interfered with engaging in valued and meaningful activities; recognition that increased fatigue corresponded with treatment cycles and medications.	Pain was described as a common symptom experienced by their loved one, which required medical and behavioral management. Fatigue was described as a common symptom experienced by their AYA and was often tied to the timing of their treatment course. Fatigue was described as limiting engagement in everyday activities.	Confirmed the need to provide education about and normalize pain and fatigue in the context of advanced/recurrent cancer. Confirmed the need to include behavioral symptom coping skills to address pain and fatigue. Education about the overactivity cycle and activity pacing as an alternative.
2. Emotional symptom burden experienced by AYA participants or the caregiver’s loved one	Distress was associated with: (1) reminders of limitations; (2) comparing themselves to peers in relation to abilities and where they are in their lives; (3) fear of cancer progression; (4) going from being seemingly healthy to having advanced cancer; (5) not being able to do things that are important to them; (6) uncertainty about how long they will live; (7) concern that the treatment they are receiving is not working. Miss the sense of accomplishment and structure that they received from working and engaging in other goal-directed activities (e.g., playing sports).	Distress experienced by caregivers’ loved ones was associated with: (1) scans and lab work; (2) the impact that their death may have on their caregiver and other family/friends; (3) finances since they are unable to work; (4) not feeling such as they can live a normal life; (5) and the unknown path ahead (e.g., due to rare cancer type, due to failed treatments).	Confirmed the need to provide education about and normalize distress in the context of cancer. Confirmed the need to include behavioral symptom coping skills to address emotional distress. Focus on engaging with sources of meaning in the face of life-limiting illness. Focus on addressing cognitions that contribute to distress and impact engagement in valued activity. Include distancing strategies to promote engagement in valued and meaningful action in the face of symptoms and negative cognitions.
B. Symptom impact
3. Shift in prioritization due to the AYA’s cancer diagnosis and/or symptom burden	More aware of where they focus their energy and how they spend their time due to life-limiting illness. Shift from activities that require physical exertion to activities that occupy their mind. Prioritized time with family and friends and doing things that are important to them. Shifted priorities from saving for retirement to doing things that are important to them now.	Their loved ones’ priorities have shifted because of their cancer diagnosis and symptoms (e.g., new career paths, turning to faith, noticing that things that their peers complain about are not big problems, greater focus on their hobbies). Spend more time with their loved ones and have become closer. No longer put things off because of work.	Normalize shifts in prioritization and the need to engage with valued activities in a different way. Help participants channel bravery and courage when working toward new value-consistent and meaningful goals. Focus on attitudinal sources of meaning.
4. Impact of cancer on sense of meaning	Have a new appreciation for things in their lives that they had previously not noticed or had taken for granted (e.g., beauty in the world around them, relationships with important people in their life, traveling to new places and seeing the world). Greater appreciation of the “little things” in life (e.g., spending time with friends and family, eating a nice meal, spending time with a pet). Recognition that some valued areas may not be achievable in the same way due to life-limiting illness (i.e., career goals). Have become more spontaneous.	Some expressed uncertainty about whether their loved ones’ sense of meaning had changed since their diagnosis. Have a new appreciation for what is important in life.	Helping participants better understand their values and new ways to connect with their values through creative, experiential, attitudinal, and historical sources of meaning. Personalize the description of the four sources of meaning to participants’ lives. Include definitions provided by AYA participants when defining meaning in the program.
C. Symptom management strategies
5. Strategies used to facilitate symptom management by the AYA or by the caregiver in helping the AYA manage symptoms	Increased focus on their health. Shifting to focus on goals that are achievable at their current level of functioning or shifting actions to make them more achievable (e.g., breaking tasks into smaller goals). Understanding that they are not alone in their suffering (e.g., by reading about others who faced challenges, by connecting with other young people with cancer). Leaning on their network of close others for emotional (e.g., spending time with people they care about) and task support (e.g., go-fund me for financial support). Engaging in valued and meaningful activities (e.g., spending time in nature, reading a favorite book or watching a favorite movie, spending time with pets, being physically active). Shifting their mindset to focus on the present as well as on things that they can control.	Have had to learn to ask for help from people in their support network. Helps to advocate for their loved one in interactions with the medical system. Tries to facilitate a positive mindset and provide a sense of normalcy. Encourages loved ones to pace themselves during activities, especially following treatment. Helps to facilitate their loved one’s participation in meaningful activities in different and new ways to account for symptoms. Encourages loved ones to reach out to friends for support. Provide emotional (e.g., serving as a sounding board, praying together, being a listening ear) and task support (e.g., financial support, cooking meals, helping with household chores). Reminds loved ones to use symptom management strategies recommended by their medical team.	Education about the overactivity cycle and activity pacing as an alternative. Education about types of social support and identification of individuals in AYAs’ support networks who are well matched to provide needed support. Assertive communication strategies to help make requests of their support networks. Values identification and working to connect with creative, experiential, attitudinal, and historical sources of meaning. Include distancing strategies to become unhooked from the unhelpful thoughts.
D. Intervention preferences
6. Intervention content	Four sources of meaning as defined by Meaning Centered Psychotherapy resonated with participants though they had less connection with the idea of their legacy due to their young age. Help participants pace themselves while working toward valued and meaningful goals. Help to hold participants accountable for engaging in valued and meaningful action. Help participants utilize support resources available in their network. Help participants find meaning in their lives outside of their cancer/treatment. Help participants understand that they are not alone in their experience.	Provide strategies to help participants engage in life, stay hopeful, and not fixate on their prognosis. Personalize the skills to participants’ lives and experiences. Provide opportunities (e.g., resources) for peer support for AYAs with cancer. Provide skills to help participants better communicate their needs to their caregivers and offer opportunities to practice these skills in session.	Describe historical sources of meaning as life as a living story being created rather than focusing solely on legacy. Education about the overactivity cycle and activity pacing as an alternative. Review of home practice assignments at the start of each session. Assertive communication strategies to engage with and facilitate requests of their support networks; practice using these skills in session. Help participants connect with their personal values through creative, experiential, attitudinal, and historical sources of meaning. Include distancing strategies to become unhooked from unhelpful thoughts. Include information about resources developed for AYA cancer survivors including those that provide peer support.
7. Intervention structure/format	Preference to have the intervention delivered by someone who was similar in age. Intervention should be personalized to the experiences of each individual AYA. No consensus about the inclusion of caregivers in the intervention, though some thought caregivers could help to facilitate participants’ use of program skills. Preferred a brief intervention and were in support of a four-session program. Preferred a remotely delivered program.	Preferred a brief intervention and were in support of a four-session program. Preferred a remotely delivered program with the majority preferring individual vs. group delivery. No consensus about the inclusion of caregivers in the intervention, with some thinking it could be helpful and others describing it as a potential barrier. Ease the participant into the content (e.g., start by getting to know them and then moving into more challenging topics).	Interventionist to deliver the program was a young adult. Intervention to be delivered individually vs. in a group format. Help AYAs better communicate their symptom management needs to their caregivers and members of their support networks. Keep the program brief (four sessions) and deliver the program via Zoom. Learn about the patient in session 1 and discuss more challenging skills as the program progresses.
8. Barriers to intervention participation	High symptom burden and participants’ treatment schedules may interfere with session attendance. In-person sessions. Sending impersonal messages or letters to recruit participants.	High symptom burden, participants’ treatment schedules, and competing demands may interfere with session attendance. In-person sessions. Having a long intervention (e.g., session length and number of sessions). If participants do not understand the greater benefit they can provide by participating in research.	Keep the program brief (four sessions) and deliver the program remotely via Zoom. Allow for flexible scheduling and the possible need for rescheduling program sessions to accommodate symptom burden and treatments. Recruit participants in-person during clinic visits, which will allow for face-to-face discussion of the program, rationale for participating in research, and potential benefits.

Symptom burden

Participant responses

AYAs and caregivers acknowledged pain, fatigue, and emotional distress as common symptoms experienced by AYAs with advanced or recurrent cancer. Pain was often present prior to diagnosis. For some, pain decreased after initiating treatment; for others, pain was persistent. Pain flares were common and associated with overactivity. Fatigue was often tied to the timing of patients’ treatments (e.g., more severe in the days immediately following treatment). The interference of fatigue on AYAs’ valued and meaningful activities was emphasized by both AYAs and caregivers. AYAs’ distress was related to advanced cancer stage, prior failed treatments, fear of disease progression, and limited life expectancy. Other factors contributing to distress included finances, concerns about the impact of their illness and subsequent death on family/friends, not being able to achieve desired goals, and comparing themselves with their peers.

Intervention content/format

Results confirmed the need to provide symptom education; to normalize pain, fatigue, and emotional distress as common symptoms; and to include skills to address these symptoms (e.g., activity pacing, relaxation training, engaging with sources of meaning in the face of life-limiting illness, and addressing cognitions that interfere with valued and meaningful action).

Symptom impact

Participant responses

AYA participants and caregivers explained that the diagnosis of advanced or recurrent cancer and associated symptom burden shifted AYAs’ prioritization for how they spend their time (e.g., more time with family and friends), where they focused their energy (e.g., activities that occupy their mind vs. those that require physical exertion), and their perception of the relative importance of everyday annoyances. Many AYAs described a newfound appreciation for “the little things in life” (e.g., beauty in the world, relationships, travel, eating a nice meal, spending time with a pet); this shift was countered by recognition that some life areas they had previously valued and strived toward (e.g., career goals) may no longer be achievable.

Intervention content/format

Based on these responses, intervention content included strategies to help participants (1) better understand their values; (2) connect with their values through creative, experiential, attitudinal, and historical sources of meaning; and (3) channel bravery and courage when working toward value-consistent and meaningful goals.

Symptom management strategies

Participant responses

Symptom management strategies involved techniques that were both cognitive (e.g., focusing on goals that are achievable, understanding that they are not alone in their experience of suffering, focusing on the present and things within their control) and behavioral (e.g., breaking tasks into smaller steps, turning to their support network for emotional and task support, activity pacing, engaging in valued and meaningful activities).

Intervention content/format

Results supported including strategies to facilitate activity pacing and help AYAs connect with sources of meaning. Responses also suggested including strategies to foster social support (e.g., matching network members’ skills with AYAs’ needs; using assertive communication to make support requests) and distancing strategies for managing unhelpful thoughts associated with situations outside of their control.

Intervention preferences

Participant responses

AYAs and caregivers were overwhelmingly supportive of a psychosocial intervention to facilitate symptom management tailored to the unique experiences of AYAs with advanced or recurrent cancer. They felt that the program would provide useful, actionable tools for symptom management and that the program would hold participants accountable for engaging in valued and meaningful action. Participants felt the program should be brief, personalized to AYA’s individual experiences, and flexible to accommodate for AYAs’ treatment schedules, competing demands, and symptom burdens. There was no consensus about including caregivers in the program, though participants stressed the value of helping AYAs better communicate their symptom management needs to caregivers. AYAs and caregivers expressed value in helping AYAs understand that they are not alone in their experiences by engaging similar-aged individuals in program recruitment and delivery and by including information about AYA-specific resources.

Intervention content/format

Results suggested that a brief (i.e., four-session) psychosocial symptom management intervention delivered individually to AYAs would be acceptable and allow for personalization of program skills to each AYA’s experience and symptoms. Home practice assignments, reviewed at the start of each session, would hold AYAs accountable for using skills and participating in valued action and also provide opportunities for problem-solving and further personalization. Delivery using videoconferencing, allowing flexible scheduling (i.e., in terms of date/time), and rescheduling sessions as necessary would support participation. Rather than including caregivers, the program would teach assertive communication skills to help AYAs communicate their symptom management needs to their caregivers. Recruitment for and delivery of the intervention by a similar-aged peer (i.e., aged < 40) could help participants better connect with the program. AYA-specific resources (e.g., national organizations, online support groups) would be provided.

Prototype intervention

Data from AYAs and caregivers (Table 3) and input from content area experts (ACT: J.P.V.; MCP: W.S.B., J.G.W.; Symptom Coping: T.J.S., C.S.D.) guided development of the intervention prototype. The program (Table 4) entitled “SMILE: S ymptom M anagement for I mproved Physica L and E motional Wellbeing,” integrates behavioral symptom coping strategies (e.g., relaxation training, assertive communication) with strategies from ACT (e.g., values identification/clarification, cognitive defusion) and MCP (e.g., engagement with sources of meaning), with the goal of (a) reducing symptom burden and interference and (b) promoting values-driven, meaningful action in the face of life-limiting illness.

Table 4.

SMILE Intervention Content by Session

Session	Content
Session 1: Introduction and discussion of meaning	The Biopsychosocial-Spiritual Model as a framework for impacts and intervention strategies Impact of cancer on sense of meaning and review of sources of meaning Relaxation for symptom management, including introduction to guided imagery and in-session practice
Session 2: Valued living through creative and experiential sources of meaning	Impact of cancer on identity and sense of self Values identification Creative and experiential sources of meaning Building meaning using activity pacing
Session 3: Impact of thoughts on valued action and meaningful living	The impact of thoughts (i.e., your inner advisor) Getting unhooked from your thoughts using distancing strategies Choosing your response to your inner advisor (i.e., attitudinal sources of meaning)
Session 4: Symptom communication to move towards valued and meaningful action	Identifying your support network Assertive communication strategies Coping when your support network “doesn’t get it” Utilizing support resources Creating a plan for ending the program

SMILE, Symptom Management for Improved PhysicaL and Emotional Wellbeing.

The four sessions were designed to be delivered using videoconferencing and conducted over an 8-week period to accommodate patients’ symptoms and competing demands. Printed manuals were developed (Fig. 2), which provided session-by-session educational content, resources, and worksheets, and were designed to be reviewed with the AYA by the interventionist. The manual also included home practice activities to support engagement with intervention content. AYA-specific examples and images were used to tailor content to the population.

FIG. 2.

Patient intervention manual example.

Intervention refinement sessions

The prototype patient manual was reviewed by N = 3 intervention-naïve AYAs (Table 5). AYAs liked the look and feel of the materials, felt that the intervention length was appropriate, and preferred delivery via videoconferencing over in-person or telephone-based delivery. Few modifications were suggested. Participants: (1) identified content areas that could be confusing (e.g., biopsychosocial-spiritual model), and clarifying language was added to the corresponding therapist manual; (2) suggested streamlining program content and using bullet points rather than large paragraphs; and (3) recommended developing a study website (Fig. 3) where relaxation recordings and other digital content (e.g., links to AYA-specific resources) could be accessed. Text message-based reminders were recommended to facilitate completion of assessments and intervention sessions.

FIG. 3.

SMILE website. SMILE, Symptom Management for Improved PhysicaL and Emotional Wellbeing.

Table 5.

Qualitative Findings from Intervention Refinement Sessions and Corresponding Modifications to the SMILE Intervention

Domains	Participant feedback	Modifications to SMILE intervention (as needed)
Interest in participation	Strong interest, especially among AYAs seeking meaning and support beyond standard care. Value in programs that foster reflection, accountability, and connection. Viewed as an alternative/complement to medication for those with side effects or limited options.	N/A
Session 1: Cancer story and focus on meaning	Sharing cancer stories is therapeutic and important for processing identity changes. Value discussing biological, psychological, social, and spiritual impacts. Many have reached acceptance and are seeking to redefine meaning post-diagnosis.	Provided additional clarification in the therapist manual when describing the biopsychosocial-spiritual model.
Session 1: Experiences with relaxation/symptom management and willingness to try strategies	Mixed prior experience with relaxation/imagery; some willing to try, others unsure of effectiveness for their pain. Recognized as potentially valuable, especially for those new to these strategies. General openness to trying new strategies. Helpful to learn healthy coping mechanisms and suggested using audio/web tools to increase accessibility.	Provided additional clarification in the therapist manual about the benefit of relaxation training for pain management. Created a website with audio recordings of relaxation exercises to facilitate home practice.
Session 2: Description resonance with experience	Content largely resonated and made sense. Topics described as interesting and exciting (e.g., exploring their identity and abilities before/after cancer).	N/A
Session 2: Identifying values and meaningful activities	Emphasis on living according to one’s own values, not just those imposed by others. Challenges with fatigue/burnout make activity pacing and rest essential. Desire for guidance on engaging in meaningful activities within limits.	Increased emphasis on using activity pacing to facilitate engagement in valued and meaningful activities.
Session 2: Experience with activity-rest cycling and willingness to try	Recognized as important due to fluctuating energy/symptoms; many often overdo activities on good days making it more difficult to do tasks or value-driven behavior the next day. All willing to try and agree would likely help with exhaustion/fatigue and help engage better in meaningful activities. Described the need to adapt valued activities (e.g., social connections/interactions) to accommodate for limitations.	Normalized engaging with activities in a different way to account for current symptoms to facilitate valued action without exacerbating symptoms.
Session 2: Suggestions for content changes	Requested more bullet points and visual aids to support concentration of patient with “chemo brain”. Mentioned competing demands of health needs potentially impeding consistent engagement with the session content.	Decreased text in the written patient manual and added bullet points.
Session 3: Description resonance with experience	Content generally resonated as participants related to the concept of the “inner advisor” and its influence on mood/self-perception.	N/A
Session 3: Inner advisor, distancing strategies, and willingness to try	Related to “inner advisor” concept; described using external support to manage negative inner dialogue. Value in learning to separate thoughts from self especially on days when it is harder to quiet the voice of the inner advisor	N/A
Session 3: Understanding of choosing attitude and BOLD strategy	Demonstrated understanding of concepts and many related to personal experiences with their inner advisor connecting to attitude. Expressed awareness that they have less control over thoughts/emotions but rather have control over the responses to those experiences. Understood importance of pausing to assess and decide how to act. The BOLD Strategy was described as empowering for promoting self-advocacy and managing internal/external challenges.	N/A
Session 4: Description resonance with experience	Agreement that the topics are extremely relevant and important for navigating interactions with close others and the process of learning assertive communication and how to cope when others do not provide wanted/needed support.	N/A
Session 4: Assertive communication with supportive networks and willingness to try	Assertive communication was seen as highly relevant, especially for expressing needs to family, friends, and acquaintances regarding difficult, cancer-related topics. Highlighted that AYAs are still learning healthy ways of communication. Lack prior experience with assertive communication but desire to learn the important skill of honest, values-based communication.	Increasing opportunities to practice assertive communication skills with the study therapist.
Session 4: Resources for AYAs with cancer	Support networks (family, friends, online groups) are critical but challenging when others have unrealistic expectations. Reflected on the importance of developing a sense of community as an AYA with advanced cancer. Appreciated including AYA-specific resources and desired more connection with similar aged peers with a cancer history.	Included links to national organizations and web-based resources specific to AYAs on the study website.
Manual format: density, readability, images	Manual was viewed as clear, direct, easy to read, and appropriately formatted. Enjoyed the layout of the manual and noted that it provided “guided notes.” Images were considered suitable and appropriate. Suggested more bullet points to aid memory/focus.	Longer text boxes were changed to bullet pointed lists.
Relevance of examples	Examples provided were helpful and prompted reflection on personal meaning.	N/A
Missing symptom management strategies	Expressed desire for more discussion of medication management of side effects.	Therapist was encouraged participants to speak with their medical team about any questions about management of side effects with medications.
Recommendations for improvement	Participants felt that the program covered relevant strategies but one questioned whether they were applicable to all AYAs. Incorporate digital tools (online support) for group interaction and community building. Provide content in multiple formats	Program was described as providing a menu of coping skills that participants can choose from as needed to address their specific symptoms. Information about online support groups was provided on the study website.
Barriers to engagement	Fluctuating symptoms, fatigue, and competing demands may hinder consistent participation. Some skepticism about benefit and relevance/practicality of certain strategies. Reluctance to engage in face-to-face therapy initially for some.	Flexible scheduling and timing of program sessions to accommodate fluctuating symptoms and competing demands. Provide clear rationale for and potential benefits of the program in study recruitment materials. Sessions were held over Zoom. Patients were encouraged to have their cameras on, but it was not a requirement.
Facilitators of engagement	Provided positive feedback on the program’s supportive, non-prescriptive approach. Ensure content is concise and directly addresses AYAs’ unique challenges, values, and the bigger picture/their perception of meaning.	Streamline description of content and ensure relevance to the participant’s experience.

AYA, adolescent and young adult; BOLD, Breathe, Observe, Listen, Decide; SMILE, Symptom Management for Improved PhysicaL and Emotional Wellbeing.

Discussion

For many AYAs with advanced or recurrent cancer, life-limiting illness, aggressive treatments, and associated high symptom burden interfere with engagement in developmentally relevant, value-consistent goals. To date, few psychosocial symptom management interventions target these unique needs. By obtaining qualitative and quantitative data from AYAs and caregivers, we were able to characterize AYAs’ symptom burden and systematically develop and refine an intervention specifically targeting this population. Results pointed to four key findings: (1) high symptom (i.e., pain, fatigue, emotional distress) burden and relatively low self-efficacy for symptom management among this population; (2) the significant impact of symptoms and life-limiting illness on AYAs’ lives and associated goals; (3) the need for and use of both cognitive and behavioral strategies to manage symptoms; and (4) the value of creating a program that provided developmentally relevant support and actionable skills while addressing the unique experience of being an AYA with advanced or recurrent cancer.

Intervention development interviews and refinement sessions also highlighted the relevance and acceptability of including behavioral symptom coping strategies along with strategies from ACT and MCP in the intervention. While strategies derived from these evidence-based approaches are complementary, these approaches have not yet been combined. Through this novel integration, AYAs receive specific education and skills-based instruction to reduce symptom severity and facilitate engagement in valued and meaningful action even in the face of symptoms and life-limiting illness. Refinement sessions provided preliminary evidence for the acceptability of the intervention and allowed for further tailoring to the population and ensuring the appropriateness of the intervention content and format. The refined intervention is now ready to be delivered to AYAs to further evaluate feasibility and acceptability.

This study has several notable strengths. First, it was conducted using a systematic approach to intervention development guided by the NIH Stage Model.³⁵ Second, it targeted the needs of AYAs with advanced or recurrent cancer, who represent an underserved population in need of such interventions and resources. To ensure that the intervention addressed the population’s developmental stage and unique experiences, input was obtained from AYAs and their caregivers. Results suggested limiting the intervention to AYAs (vs. including caregivers), which is consistent with AYAs’ desire for independence from their families or origin,⁶⁶ while also including strategies to improve communication with caregivers and supportive others to facilitate symptom management. Other notable age-specific findings included interest in having similarly aged individuals involved in program recruitment and delivery, as well as the inclusion of information about AYA-specific resources to help patients understand that they are not alone in their experiences as both a young person and a young person with cancer. Finally, the sample included a wide representation of cancer types and treatments, allowing findings to be generalized across disease and treatment settings.

Despite these strengths, the study has several limitations. First, the relatively small sample sizes and limited racial/ethnic diversity (i.e., race, ethnicity) may impact generalizability. Second, intervention refinement sessions were completed with three AYAs. While participants were generally pleased with the intervention content, format, and structure and provided minimal suggestions for modifying or refining the intervention, we recognize that the small, relatively homogenous sample may further limit the generalizability of study findings. The intervention will next be evaluated for feasibility and acceptability through a pilot randomized controlled trial. During this phase, AYAs receiving the intervention will be asked to provide additional qualitative feedback to determine if any other modifications or refinements are needed prior to evaluating the intervention in a larger efficacy trial. Third, due to the project’s scope and focus on developing an intervention for patients, oncology providers were not recruited for participation during the intervention development and refinement processes. Future research would benefit from obtaining input from a variety of oncology providers (e.g., oncologists, advanced practice providers, palliative care specialists, social workers, psychologists) as well as clinical leaders to better understand the feasibility of implementing an intervention of this kind in clinical practice. Each of the aforementioned steps will move the intervention closer to becoming integrated into standard oncology care for AYAs with advanced or recurrent cancers to better support their physical and emotional well-being.

AYAs with advanced or recurrent cancer have generally been underrepresented in the behavioral symptom management literature. Results highlight the need to better understand the symptom experience of this population so that we can develop targeted interventions to address their unique needs. By taking a user-centered approach to intervention development guided by the NIH Stage Model, we have developed an intervention combining three novel, evidence-based approaches. This intervention has the potential to significantly improve symptom management and overall well-being among this underserved population of patients with cancer. Results also highlight the importance of symptom screening so that patients may be directed to targeted, developmentally relevant interventions such as the one developed in this study, which is responsive to the high symptom burden and developmental stage of AYAs with advanced cancer or recurrent cancer.

Authors’ Contributions

The article has been approved by all authors. Conceptualization: C.S.D., T.J.S., L.W., J.P.V., J.G.W., W.S.B., G.M., and C.M.C.; Methodology: C.S.D. and T.J.S.; Project administration: C.S.D., N.A.C., A.D., and T.J.S.; Formal analysis: C.S.D., B.H., and N.A.A.; Funding acquisition: C.S.D.; Writing—original draft: C.S.D., N.A.A., and N.A.C.; Writing—reviewing and editing: T.J.S., J.G.W., J.P.V., G.M., L.W., A.D., B.H., C.M.C., and W.S.B.

Footnotes

Acknowledgment

The authors thank Dr. Julia Kearney for her guidance with adapting Meaning-Centered Psychotherapy for adolescent and young adults with cancer.

Author Disclosure Statement

The authors declare no conflicts of interest.

Funding Information

Dr. Caroline S. Dorfman was supported by a grant from the National Institutes of Health (R21CA263727-01A1).

Supplemental Material

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