Social Experiences of Adolescents and Young Adults With Cancer

NCT04328350 | Active Not Recruiting

• 1 other identifier: CONNECT
• Study Type: observational
• Target: 121
• Locations: 1 country
• Sites: 1

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.

Conditions

Childhood Cancer; Social Behavior; Social Competence

Outcome Measures

Primary Outcomes (5)

• Inventory of Parent and Peer Attachment (IPPA).

  This is a self-report measure of perceptions of the relationship between an individual and their mother, father and close friends.

  Baseline

• UCLA Loneliness Scale.

  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.

  Baseline

• Family Management Measure (FMM).

  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.

  Baseline

• Self-Perception Profile for Adolescents/Emerging Adults (SPPA/EA).

  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.

  Baseline

• NIH Toolbox - Friendship

  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.

  Baseline

Secondary Outcomes (11)

• Young Adult Cancer Impact Scale

  Baseline

• Centrality of Events (COE).

  Baseline

• Online Social Support Scale (OSSS).

  Baseline

• Multidimensional Scale of Perceived Social Support (MSPSS).

  Baseline

• Responses to Stress Questionnaire (RSQ)

  Baseline

Study Arms (2)

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.

Eligibility Criteria

• Age: 15 Years - 22 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64)
• Sampling Method: Non-Probability Sample

Study Population

All participants who meet eligibility criteria and consent to enrollment on the study.

You may qualify if:

• All Participants
• Age 15 - 22
• Primary oncology diagnosis.
• Reads and speaks English.
• On-Therapy Strata
• months from diagnosis and receiving cancer-directed therapy.
• Off-Therapy Strata
• years post-treatment, diagnosed at ≥13 years of age.
• Caregivers Reads and speaks English
• Consent received from adult participant to contact, as it applies

You may not qualify if:

• 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.

Sponsors & Collaborators

• St. Jude Children's Research Hospital: lead

Study Sites (1)

St. Jude Children's Research Hospital

Memphis, Tennessee, 38105, United States

Location

Related Links

• St. Jude Children's Research Hospital
• Clinical Trials Open at St. Jude

MeSH Terms

Conditions

Neoplasms; Social Behavior; Social Skills

Condition Hierarchy (Ancestors)

Behavior

Study Officials

• Sarah W. Daniels, PhD

  St. Jude Children's Research Hospital

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: March 27, 2020
• First Posted: March 31, 2020
• Study Start: October 12, 2020
• Primary Completion (Estimated): December 1, 2026
• Study Completion (Estimated): December 1, 2026
• Last Updated: April 23, 2026

Record last verified: 2026-04

Locations

US (1)