Evidence map›Paper›PMID 29222598›Full record

ArticleSupportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer2018

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

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

Registry-linked trialAbstract read
PubMed Publisher
In one paragraph

Article in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT03778658 (AYA-UNITE), which is not on this map. Cited by 43 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
43citing papers in PubMed, 2 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT03778658 nacompletednot on this mapstarted 2020, after this paper: background citation

AYA-UNITE (Utilizing Novel Information Technology to Promote Exercise and Well-Being)

TypeinterventionalSponsorMilton S. Hershey Medical CenterRan2020 to 2022Enrolled7ConditionsAdolescent, Young Adult, Cancer, Physical ActivityArmsPhysical Activity Intervention
3 · Its place in the literature

Who cites it

43 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Pooled it
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  12. "I had no idea what to expect": adolescent and young adults with cancer identify opportunities for patient-centered anticipatory guidance through narrative writing.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025
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  15. Development of thePEC innovation · 2023
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors.

Maria C McCarthyMurdoch Children's Research Institute, Parkville, Victoria, 3052, Australia. mccarthy@rch.org.au.ORCID http://orcid.org/0000-0001-6543-3921
Robyn McNeilMurdoch Children's Research Institute, Parkville, Victoria, 3052, Australia.
Sarah DrewCentre for Adolescent Health, Royal Children's Hospital, Parkville, Victoria, 2052, Australia.
Lisa OrmeChildren's Cancer Centre, Royal Children's Hospital, Parkville, Victoria, 3052, Australia.
Susan M SawyerMurdoch Children's Research Institute, Parkville, Victoria, 3052, Australia.

Funding

Cancer Australia APP1010977Murdoch Children's Research Institute Career Development Award N/AONTrac N/ARedkite N/AThe Royal Children's Hospital Foundation N/AVictorian Government's Operational Infrastructure Support Program N/A
6 · The paper itself

Abstract

purposeThis 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.

methodsIn 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.

resultsAYAs 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.

conclusionThese 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.

Indexed as

AdolescentAdultCaregiversCross-Sectional StudiesFemaleHealth Services Needs and DemandHumansMaleNeoplasmsParentsYoung AdultAdolescent and young adultCancerInformationParentsPatient activationUnmet needs

Identifiers

PMID29222598

What OpenQuestion holds

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Read underepoch 390

Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.