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Information needs of adolescent and young adult cancer patients and their parent-carers

Overview of attention for article published in Supportive Care in Cancer, December 2017
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24 Mendeley
Title
Information needs of adolescent and young adult cancer patients and their parent-carers
Published in
Supportive Care in Cancer, December 2017
DOI 10.1007/s00520-017-3984-1
Pubmed ID
Authors

Maria C. McCarthy, Robyn McNeil, Sarah Drew, Lisa Orme, Susan M. Sawyer

Abstract

This study aimed to explore health-related information needs of adolescent and young adults (AYAs) and their parent-carers and to examine demographic and clinical variables associated with unmet information needs, including patient activation. In a national cross-sectional study, 196 Australian AYAs diagnosed with cancer between 15 and 25 years and within 24 months of diagnosis and 204 parent-carers reported on total and unmet needs for cancer and health-related information. Fifty-one percent of AYAs were male, 81% had completed treatment and 86% were treated in adult hospitals. AYAs and parents reported high levels of total need for information. The mean number of unmet needs was 5.63 and 6.82 for AYAs and parents, respectively. AYAs reported the highest unmet needs in relation to their cancer (e.g. late effects and cancer recurrence, and having children in the future). The highest unmet parent information needs were related to medical information about their child as well as information on financial issues for their children and themselves. Unmet information need was associated with psychological distress (posttraumatic stress symptoms) for AYAs and parents. Patient activation was negatively associated with unmet information needs for AYAs. Demographic and treatment variables were not significantly associated with information needs. These findings indicate the importance of information needs for AYAs and their carers. The association between patient activation and information needs suggests that promoting young people's engagement with healthcare is a key opportunity within AYA care. Parent information needs and associated emotional distress additionally highlight the importance of family-centered care.

Mendeley readers

The data shown below were compiled from readership statistics for 24 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 24 100%

Demographic breakdown

Readers by professional status Count As %
Unspecified 5 21%
Researcher 5 21%
Student > Bachelor 4 17%
Student > Ph. D. Student 2 8%
Professor 2 8%
Other 6 25%
Readers by discipline Count As %
Unspecified 8 33%
Nursing and Health Professions 7 29%
Social Sciences 4 17%
Medicine and Dentistry 3 13%
Sports and Recreations 1 4%
Other 1 4%

Attention Score in Context

This research output has an Altmetric Attention Score of 1. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 02 December 2018.
All research outputs
#11,567,496
of 13,017,201 outputs
Outputs from Supportive Care in Cancer
#2,241
of 2,542 outputs
Outputs of similar age
#294,974
of 346,047 outputs
Outputs of similar age from Supportive Care in Cancer
#69
of 75 outputs
Altmetric has tracked 13,017,201 research outputs across all sources so far. This one is in the 1st percentile – i.e., 1% of other outputs scored the same or lower than it.
So far Altmetric has tracked 2,542 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 5.4. This one is in the 1st percentile – i.e., 1% of its peers scored the same or lower than it.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 346,047 tracked outputs that were published within six weeks on either side of this one in any source. This one is in the 1st percentile – i.e., 1% of its contemporaries scored the same or lower than it.
We're also able to compare this research output to 75 others from the same source and published within six weeks on either side of this one. This one is in the 1st percentile – i.e., 1% of its contemporaries scored the same or lower than it.