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J Adolesc Young Adult Oncol. 2013 Jun;2(2):44-52.

Talking About Cancer and Meeting Peer Survivors: Social Information Needs of Adolescents and Young Adults Diagnosed with Cancer.

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1
Cancer Prevention Fellowship, National Cancer Institute , National Institutes of Health, Bethesda, Maryland. ; Office of Cancer Survivorship, National Cancer Institute , National Institutes of Health, Bethesda, Maryland. ; Outcomes Research Branch, Applied Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute , National Institutes of Health, Bethesda, Maryland.

Abstract

PURPOSE:

Limited research exists on the social information needs of adolescents and young adults (AYAs, aged 15-39 at diagnosis) with cancer.

METHODS:

The Adolescent and Young Adult Health Outcomes and Patient Experiences (AYA HOPE) Study recruited 523 patients to complete surveys 6-14 months after cancer diagnosis. Participants reported information needs for talking about their cancer experience with family and friends (TAC) and meeting peer survivors (MPS). Multiple logistic regression was used to examine factors associated with each need.

RESULTS:

Approximately 25% (118/477) and 43% (199/462) of participants reported a TAC or MPS need respectively. Participants in their 20s (vs. teenagers) were more likely to report a MPS need (p=0.03). Hispanics (vs. non-Hispanic whites) were more likely to report a TAC need (p=0.01). Individuals who did not receive but reported needing support groups were about 4 and 13 times as likely to report TAC and MPS needs respectively (p<0.05). Participants reporting high symptom burden were more likely to report TAC and MPS needs (p<0.01), and those reporting fair/poor quality of care were more likely to report a TAC need (p<0.01). Those reporting that cancer had an impact on several key relationships with family and friends were more likely to report social information needs.

CONCLUSION:

Social information needs are higher in AYAs diagnosed in their 20s, in Hispanics, among those reporting high symptom burden and/or lower quality of care, and in individuals not in support groups. Efforts should be made to develop interventions for AYAs in most need of social information and support.

KEYWORDS:

communication; information needs; peer support; social support; support group; survivorship

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