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Online Platform to Assess Complex Social Relationships and Patient-Reported Outcomes Among Adolescent and Young Adult Cancer Survivors

Year: 2021

Type: article

Abstract: ABSTRACT Importance Nearly 89,000 adolescents and young adults (AYAs) aged 15 to 39 years old are diagnosed with cancer in U.S. annually. Cancer diagnosis in AYAs often alters achievement of age-specific milestones, interferes with interpersonal relations, and disrupts social life. However, social relations in AYA survivors and associations with patient-reported outcomes (PROs) have been understudied. Objective To investigate the impact of cancer on PROs in AYA survivors and identify social integration mechanisms through which cancer experiences influence PROs. Design A cross-sectional study. Setting A national Internet survey panel maintained by Opinions 4 Good (Portsmouth, New Hampshire). Participants 102 AYA survivors and 102 age/sex/race-matched noncancer controls. Exposure Survivors were exposed to chemotherapy and/or radiotherapy during AYA. Main outcomes and measures Participants identified 25 closest friends/relatives they have contacted in past two years. Their interpersonal connections with each of 25 friends/relatives were used to create a social network index. The Duke-UNC Functional Social Support Questionnaire, UCLA Loneliness Scale, and PROMIS-29 Profile was used to measure social support, loneliness, and PROs (physical functioning, pain interference, fatigue, anxiety, and depression), respectively. Results AYA survivors of lymphoma, leukemia, and solid tumor had significantly better social networks than controls (all p-values <0.05). However, solid tumor and central nervous system malignancy survivors experienced higher loneliness than controls. Compared to controls, survivors had significantly poorer PROs in all domains. Cancer experience directly influenced all PRO domains (all p-values <0.05 except fatigue) and indirectly through social network-social support-loneliness pathways (all p-values <0.05). Survivors with high loneliness had lower physical functioning, higher pain interference, fatigue, anxiety, and depression compared with noncancer controls (all p-values <0.05). Conclusions and relevance AYA survivors were more socially connected, but experienced greater loneliness than controls. The perceived loneliness greatly influenced PROs. Future research should focus on the functional aspects of social relations rather than considering the structural aspects of social integration, which would provide an opportunity for appropriate interventions to improve health outcomes through social integration. KEY POINTS Question How do social relationships associate with self-reported health outcomes between adolescent and young adult (AYA) cancer survivors and noncancer controls? Findings This cross-sectional study revealed that AYA survivors were more socially connected, but perceived greater loneliness compared to noncancer controls. AYA survivors with high loneliness had lower physical functioning, higher pain interference, fatigue, anxiety, and depression compared to noncancer controls. Meaning The findings of this study suggest that appropriate interventions, focused on improving functional social networks to further meet the needs of AYA cancer survivors, may function as a mean to prevent perceived loneliness and help achieve optimal health outcomes.

Source: JCO Clinical Cancer Informatics

DOI: 10.1200/cci.21.00044