Symptom Management and Transitioning to Engagement With Post-treatment Care for Adolescent and Young Adult Cancer Survivors

The Brief Pain Inventory will be used to assess pain severity and interference from pain across important life domains (e.g., general activity, work, relations with others). This measures includes a body map on which the patient can mark the location(s) in which they are experiencing pain, as well as 8 questions on a scale of 0 to 10 with higher scores indicating worse pain severity or pain interference.

Fatigue will be assessed using the Patient-Reported Outcomes Measurement Information System (PROMIS) Fatigue Scale, a 6-item self-report measure of fatigue. Participants are asked to think about the last week when responding to each item (e.g., "In the past 7 days, how run-down did you feel, on average?"), providing ratings on a scale from "not at all" (1) to "very much" (5).

Depressive symptoms will be assessed using the Patient-Reported Outcomes Measurement Information System (PROMIS) Depression Short Form, an 8-item measure assessing symptoms of depression in the last week. Responses are on a 5-point scale from "never" (1) to "always" (5).

Symptoms of Anxiety will be assessed using the Patient-Reported Outcomes Measurement Information System (PROMIS) Anxiety Short Form, an 8-item measure assessing symptoms of anxiety in the last week. Responses are on a 5-point scale from "never" (1) to "always" (5).

The MDASI will be used to assess interference of symptoms in daily living (e.g., working, relations with other people, enjoyment of life) over the past month. The MDASI asks patients to rate the severity of 13 symptoms found frequently in patients with various cancers and treatment types on a scale from 0 (symptom "not present") to 10 (symptom "as bad as you can imagine"). This measure also includes 6 questions asking patients to rate the level of symptom interference in six domains (e.g., general activity, mood) on a scale from 0 (did not interfere) to 10 (interfered completely).

The Patient Participation Questionnaire will be used to assess participants' health care participation and associated domains (i.e., receipt of information, communication, perceptions of their relationship with the medical team). Participants are asked to indicate their agreement with 17 items related to health care engagement on a 4 point scale: "to a great extent," "to some extent," "to a lesser extent," or "not at all." An additional item asks patients about their overall assessment of their involvement in their healthcare.

The MCCS patient subscale will be used to assess survivors' perceptions of their competency for communicating and participating in health care. The patient subscale includes 39 items on a scale of 1 to 7, with higher scores reflecting self-perception of better medical communication competence.

The 6-item Self-Efficacy for Managing Chronic Illness Scale will be used to assess participants' current confidence in their ability to prevent symptoms (e.g., pain, fatigue, distress) from interfering with life. Responses are on a 10-point scale from "not at all confident" (1) to "totally confident" (10).

The PAM is a 13-item measure used to assess survivors' knowledge, skills, and confidence that are central to managing their health and health care. Patients are asked to rate their agreement with statements about their health and health care on a 4 point scale from "strongly disagree" to "strongly agree." From these response a total PAM score is calculated on a scale of 0-100, with higher scores indicating higher levels of activation.

The 4-item PROMIS Self-Efficacy for Managing Symptoms will be used to assess participants' confidence in their ability to manage symptoms (e.g. during daily activities, in a public place). Items are scored on a 5-point Likert scale, with higher scores indicating greater confidence.

The 4-item PROMIS General Self-Efficacy will be used to assess participants' general confidence in their abilities (e.g., to solve problems and persist toward goals). Items are scored on a 5-point Likert scale, with higher scores indicating greater confidence.

Health care utilization in the time since study enrollment will be assessed via review of participants' medical records to examine participants' receipt of general health screenings, cancer-related screenings, and follow-up care for late effects, in accordance with the 2024 National Comprehensive Cancer Network (NCCN) Adolescent and Young Adult (AYA) Guidelines.

The ADI will be calculated using participants home mailing addresses. The ADI is an indexed composite of 17 variables related to social determinants of health from the United States Census and American Community Survey that captures socioeconomic disadvantage at the census block group level. The index is reported as a percentile from 0% to 100%, with higher scores indicating higher levels of deprivation.

Participants' self-reports of their health care utilization since study enrollment will be collected to enhance the study team's ability to obtain chart review data.

The METER will be used to assess health literacy. Participants are asked to review a list of 40 words and check off those that they recognize as actual words.

The Everyday Discrimination Scale-Short Form is a 5-item scale that assesses participants' subjective experiences of daily discrimination, with patients indicating the frequency of discrimination experiences on a 6-point scale from "never" to "almost everyday." Patients who respond that they have experienced discrimination more frequently than "never" are asked what they think is the main reason(s) they experience(d) discrimination (e.g. ancestry, gender, race).

The 20-item uMARs will be adapted to obtain participants' evaluation of the AYA STEPS digital health platform and the AYA Educational Information website. Participants are asked to respond to questions regarding the quality of the mobile application on a 5-point scale from "inadequate" (1) to "excellent" (5). A total quality score is calculated as the mean of four objective quality subscales (engagement, functionality, aesthetics, and information quality). The uMARs also includes a subjective quality subscale.

The Illness Intrusiveness Rating Scale (IIRS) is a 13-item scale that assesses symptom interference across multiple life domains on a scale from 1 to 7, with higher scores indicating increased illness intrusiveness. The IIRS may be given a total sum score, or mean scores across three subscales: relationships and personal development, intimacy, and instrumental.

Participants will complete the 13-item Satisfaction with Therapy and Therapist Scale-Revised specific to the interventionists delivering either AYA STEPS or AYA Educational Information. The first 12 items ask participants to rate their agreement with statements related to intervention satisfaction on a 5-point scale ranging from "strongly disagree" (1) to "strongly agree" (5). The 13th item asks "How much did the intervention help with your symptoms?" with 5 answer choices ranging from "made things a lot better" to "made things a lot worse."

The AYA STEPS web-based portal and AYA Education Information website will track overall participant usage and content access for each of the respective sessions. The investigators will examine time spent accessing session content and time spent engaging in and completing home practice assignments.

Emotional support will be assessed using the Patient-Reported Outcomes Measurement Information System (PROMIS) Emotional Support Short Form, a 6-item measure assessing patients' perceived emotional support. Responses are on a 5-point scale from "never" (1) to "always" (5).

The 7-item functional well-being subscale of the Functional Assessment of Cancer Therapy - General (FACT-G) will assess the impact of cancer and cancer therapy on role functioning by evaluating participants' agreement with statements assessing functional well-being on a scale of 0 ("Not at all") to 4 ("Very much"). Higher scores indicate greater functional well-being.

The 12-item Functional Assessment of Chronic Illness Therapy Spiritual Well-Being Scale assesses spiritual well-being among patients with cancer. Participants report agreement with 12 statements assessing spiritual well-being on a scale of 0 ("Not at all") to 4 ("Very much"), with higher scores indicating greater spiritual well-being.

The 10-item Valuing Questionnaire assesses congruence of behaviors with values by asking participants to rate their agreement with statements reflecting valued living on a scale of 0 ("Not at all true") to 6 ("Completely true"). Higher scores indicate higher congruence of behaviors with values.

The 18-item Acceptance and Action Questionnaire for Cancer (AAQ-C) assesses psychological flexibility by asking participants to rate their agreement with 18 statements evaluating their experiences as cancer survivors, on a scale of 1 ("Never true") to 7 ("Always true"). Lower scores indicate greater psychological flexibility.