Evidence map›Paper›PMID 38008874›Full record

ArticleSupportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer2023

A qualitative study on the healthcare experiences of adolescents and young adults (AYA) with an uncertain or poor cancer prognosis.

Vivian W G Burgers, Milou J P Reuvers, Martin J B Taphoorn, Marleen Kok, Adrianus J de Langen, Martin J van den Bent, Simone A M M Frissen, Niels C G L Harthoorn, Annemiek Dickhout, Olga Husson and 1 more

Abstract readMulticenter Study
PubMed Publisher
In one paragraph

Article in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed, 1 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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
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  3. Article
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

11 authors.

Vivian W G BurgersDivision of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, the Netherlands. v.burgers@erasmusmc.nl.
Milou J P ReuversDivision of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, the Netherlands.
Martin J B TaphoornDepartment of Neurology, Leiden University Medical Centre, Leiden, the Netherlands.
Marleen KokDepartment of Medical Oncology, Netherlands Cancer Institute-Antoni van Leeuwenhoek Hospital, Amsterdam, the Netherlands.
Adrianus J de LangenDepartment of Thoracic Oncology, Netherlands Cancer Institute-Antoni van Leeuwenhoek Hospital, Amsterdam, Netherlands.
Martin J van den BentDepartment of Neurology, Erasmus University Medical Center, Rotterdam, the Netherlands.
Simone A M M FrissenAYA Research Partner, Amsterdam, the Netherlands.
Niels C G L HarthoornAYA Research Partner, Amsterdam, the Netherlands.
Annemiek DickhoutAYA Research Partner, Amsterdam, the Netherlands.
Olga HussonDivision of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, the Netherlands.
Winette T A van der GraafDepartment of Medical Oncology, Netherlands Cancer Institute-Antoni van Leeuwenhoek Hospital, Amsterdam, the Netherlands.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

purposeTreatment advancements have improved life expectancy for adolescents and young adults (AYAs) with an uncertain and/or poor cancer prognosis (UPCP) and change clinical practice. This improved survival requires a different approach and specific expertise to meet the needs of this group. The aim of this study is to explore the health care experiences of AYAs with a UPCP.

methodsWe conducted a multicenter qualitative study using semi-structured interviews and elements of the grounded theory by Corbin and Strauss.

resultsInterviews were conducted with 46 AYAs with a UPCP. They were on average 33.4 years old (age range 23-44), and most of them were woman (63%). Additionally, five AYAs with a UPCP participated as AYA research partners in two focus groups. They were on average 31.8 years old and four of them were woman. AYAs with a UPCP reported four pillars for a satisfied healthcare experience: (1) trust, (2) tailored communication, (3) holistic empathic open attitude, and (4) care being offered (pro-)actively. They reported both optimal and suboptimal experiences about distrust based on a delay in diagnostic trajectory, lack of tailored communication and discussion of sensitive topics, preference for a holistic approach, and struggles with finding the way to get additional healthcare support.

conclusionFor AYAs with a UPCP, it is important that both age-specific issues and issues related to the UPCP are understood and addressed; however, this seems not yet optimally implemented in clinical practice. This emphasizes the importance of providing this patient group with tailored care incorporating both aspects. Healthcare professionals need to be supported with training and tools to understand the healthcare needs of AYAs with a UPCP. AYAs can be empowered to take more control over their own healthcare needs.

Indexed as

NeoplasmsAdolescentAdultDelivery of Health CareFemaleHealth PersonnelHumansPrognosisQualitative ResearchYoung AdultAdolescents and young adultsHealthcare experiencesQualitative researchUncertain and/or poor cancer prognosis

Identifiers

PMID38008874

What Socratic holds

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Registered trials

None linked

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 Socratic graph.