Social Experiences of Adolescents and Young Adults With Cancer
Overview
- Phase
- Not Applicable
- Intervention
- AYA who are on treatment 2-12 months post -diagnosis
- Conditions
- Childhood Cancer
- Sponsor
- St. Jude Children's Research Hospital
- Enrollment
- 121
- Locations
- 1
- Primary Endpoint
- Family Management Measure (FMM).
- Status
- Active, not recruiting
- Last Updated
- 9 days ago
Overview
Brief Summary
Participants are being asked to take part in this clinical trial, a type of research study, because investigators want to learn more about the social experiences adolescents and young adults who are being treated or have been treated for cancer.
Primary Objectives
- Describe differences in social experience variables (peer connectedness, perceived social competence, parent versus peer attachment) based on treatment status: on versus off therapy.
- In on-therapy patients, describe differences in social experience variables (peer connectedness, perceived social competence, parent versus peer attachment) based on developmental stage: high school versus post-high school.
Secondary Objectives
- Assess the social support and peer interaction needs of AYA with cancer as a means of determining stakeholder interest and need for psychosocial interventions targeting social experiences.
- Using qualitative interviews, explore patient perceptions of the impact of cancer on social experiences among AYA, particularly with regards to changes in friendships as a result of the cancer diagnosis and the role of the hospital in helping or hindering friendship maintenance/development.
Exploratory Objectives
- Explore differences in social experience by demographic, disease and treatment factors, including: gender, diagnostic category (brain tumor, leukemia/lymphoma, solid tumor), late effects/symptom burden, and treatment (e.g., treatment intensity, serious medical events).
- Explore associations between perceived impact of cancer and social experience in AYA.
- Explore associations between use of social media and social experience.
- Explore associations between social experiences and overall functioning (quality of life, distress, coping).
- Explore the possibility of subclasses of AYA by using person-centered analyses to empirically derive profiles of social experience.
Detailed Description
A mixed-methods design involving questionnaires and interviews will be used to evaluate the study objectives. AYA ages 15 to 22 will be recruited to participate. Two cohorts will be enrolled: AYA who are on-treatment, 2-12 months post-diagnosis; and AYA who are off-therapy 1 to 4 years. AYA will complete questionnaires assessing peer versus family connectedness, peer/romantic competence, coping, distress, social support, and quality of life. A study-specific needs assessment regarding interest in social functioning interventions will also be completed. If a caregiver is available, they will be asked to complete questionnaires regarding family functioning and quality of life. A subset of 50 AYA (30 on-therapy/20 off-therapy) will be interviewed to further explore aspects of peer/family connectedness and intervention interest. Analyses will focus on describing how aspects of social experiences (peer connectedness, social competence, peer versus parent attachment) differ based on treatment status (on versus off therapy) and developmental stage (high school versus post-high school), as well as potential moderators. Two cohorts of AYA with cancer, ages 15-22, will be identified and recruited for the study: 1) patients on-therapy, 2-12 months from diagnosis; and 2) patients off- therapy 1-4 years, and ≥13 years of age at diagnosis. AYA from all diagnostic groups - brain tumor, solid tumor, leukemia/lymphoma - and developmental periods - high school, post-high school - will be targeted, and care will be taken to ensure a representative sample.
Investigators
Eligibility Criteria
Inclusion Criteria
- •All Participants
- •Age 15 - 22
- •Primary oncology diagnosis.
- •Reads and speaks English.
- •On-Therapy Strata
- •2 - 12 months from diagnosis and receiving cancer-directed therapy.
- •Off-Therapy Strata
- •1 - 4 years post-treatment, diagnosed at ≥13 years of age.
- •Caregivers Reads and speaks English
- •Consent received from adult participant to contact, as it applies
Exclusion Criteria
- •Surgery only treatment plan.
- •IQ less than 70 as documented in the medical record.
- •Diagnosis of a genetic disorder/pre-existing neurodevelopmental condition associated with neurocognitive or social impairment (e.g., autism, Neurofibromatosis Type 1 (NF1), Down syndrome).
- •Inability or unwillingness of research participant or legal - guardian/representative to give written informed consent.
Arms & Interventions
AYA who are on treatment 2-12 months post -diagnosis
AYA will complete questionnaires assessing peer versus family connectedness, peer/romantic competence, coping, distress, social support, and quality of life.A study-specific needs assessment regarding interest in social functioning interventions will also be completed. Participants (30 on-therapy) will be interviewed to further explore aspects of peer/family connectedness and intervention interest.
AYA who are off -therapy 1 to 4 years
AYA will complete questionnaires assessing peer versus family connectedness, peer/romantic competence, coping, distress, social support, and quality of life.A study-specific needs assessment regarding interest in social functioning interventions will also be completed. Participants (20 off-therapy) will be interviewed to further explore aspects of peer/family connectedness and intervention interest.
Outcomes
Primary Outcomes
Family Management Measure (FMM).
Time Frame: Baseline
This is a 53-item measure for parents designed to assess the impact of a child's health condition on the family system. Six subscales are derived, including measures of the child's daily life, the parent's perceived ability to manage the condition, and, for partnered parents, how the parents work together to manage the condition.
Self-Perception Profile for Adolescents/Emerging Adults (SPPA/EA).
Time Frame: Baseline
The SPPA/EA is a self-report measure of self-competence. Multiple constructs are assessed, including social, romantic, physical, and academic competence, as well as global self-worth. Subscales assessing Social Competence, Romantic Competence and Physical Appearance are of primary interest.
Inventory of Parent and Peer Attachment (IPPA).
Time Frame: Baseline
This is a self-report measure of perceptions of the relationship between an individual and their mother, father and close friends.
UCLA Loneliness Scale.
Time Frame: Baseline
This 20-item self-report questionnaire assesses perceptions of peer connectedness over the past month. Items assess feelings of social connectedness, loneliness, and social isolation. Questions are answered on a 4-point Likert scale from "never" to "often," and a total score is calculated.
NIH Toolbox - Friendship
Time Frame: Baseline
This is a 5- (ages 15-17) or 8-item (ages 18+) self- report questionnaire that assesses aspects of friendship. Questions assess perceived ability to access friend and participation in activities with friends over the past month on a 5-point Likert scale from never to always. Five items are similar across the two age groups. Raw scores are converted to T-scores (M = 50, SD = 10), with higher scores indicative of more perceived friends to interact with.
Secondary Outcomes
- Multidimensional Scale of Perceived Social Support (MSPSS).(Baseline)
- Young Adult Cancer Impact Scale(Baseline)
- Centrality of Events (COE).(Baseline)
- Online Social Support Scale (OSSS).(Baseline)
- Intensity of Treatment (ITR-3).(Baseline)
- PROMIS Profile / Pediatric Profile(Baseline)
- Responses to Stress Questionnaire (RSQ)(Baseline)
- Qualitative Interview(Baseline)
- PedsQL - Cancer Specific Module(Baseline)
- PedsQL - Core Module(Baseline)
- Needs Assessment(Baseline)