Journal article
Talking About Cancer and Meeting Peer Survivors: Social Information Needs of Adolescents and Young Adults Diagnosed with Cancer
Journal of adolescent and young adult oncology, Vol.2(2), pp.44-52
06/01/2013
DOI: 10.1089/jayao.2012.0029
PMCID: PMC3684139
PMID: 23781400
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.
Details
- Title: Subtitle
- Talking About Cancer and Meeting Peer Survivors: Social Information Needs of Adolescents and Young Adults Diagnosed with Cancer
- Creators
- Erin E Kent - 3Outcomes Research Branch, Applied Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, National Institutes of Health, Bethesda, MarylandAshley Wilder Smith - 3Outcomes Research Branch, Applied Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, National Institutes of Health, Bethesda, MarylandTheresa H. M Keegan - 5School of Medicine, Stanford University, Stanford, CaliforniaCharles F Lynch - 6Department of Epidemiology, The University of Iowa, Iowa City, IowaXiao-Cheng Wu - 7Epidemiology Program/Louisiana Tumor Registry, School of Public Health, Louisiana State University Health Sciences Center, New Orleans, LouisianaAnn S Hamilton - 8Keck School of Medicine at the University of Southern California, Los Angeles, CaliforniaIkuko Kato - 9Department of Oncology and Pathology, Wayne State University School of Medicine, Detroit, MichiganStephen M Schwartz - 10Public Health Sciences Division, Fred Hutchinson Cancer Research Center, Seattle, WashingtonLinda C Harlan - National Institutes of HealthAYA HOPE Study Group (Author)
- Resource Type
- Journal article
- Publication Details
- Journal of adolescent and young adult oncology, Vol.2(2), pp.44-52
- DOI
- 10.1089/jayao.2012.0029
- PMID
- 23781400
- PMCID
- PMC3684139
- NLM abbreviation
- J Adolesc Young Adult Oncol
- ISSN
- 2156-5333
- eISSN
- 2156-535X
- Publisher
- Mary Ann Liebert, Inc
- Language
- English
- Date published
- 06/01/2013
- Academic Unit
- Epidemiology
- Record Identifier
- 9983995171002771
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