Evidence map›Paper›PMID 35533426›Full record

ArticleESMO open2022

A qualitative study on the challenges health care professionals face when caring for adolescents and young adults with an uncertain and/or poor cancer prognosis.

V W G Burgers, M J van den Bent, A-S E Darlington, A E Gualthérie van Weezel, A Compter, J M Tromp, R I Lalisang, M C M Kouwenhoven, L Dirven, N C G L Harthoorn and 3 more

Open access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in ESMO open, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.

0numbers the graph read from it
0cells of the map it votes in
14citing papers in PubMed
6.9field-weighted citation impact, top 3% of its field
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

14 citing papers in PubMed, 18 citations in OpenAlex.

  1. Article
  2. Review
  3. Article
  4. Article
  5. Article
  6. Article
  7. Review
  8. Article
  9. Article
  10. Characteristics of adolescent and young adult patients with cancer receiving home-based palliative care: A retrospective study at a single center.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2024
    Article
  11. Article
  12. A qualitative study on the healthcare experiences of adolescents and young adults (AYA) with an uncertain or poor cancer prognosis.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2023
    Article
  13. Article
  14. 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

13 authors at 6 institutions in 2 countries.

V W G BurgersNetherlands Cancer Institute, Psychosocial Research and Epidemiology Department, Amsterdam, the Netherlands; Netherlands Cancer Institute-Antoni van Leeuwenhoek, Department of Medical Oncology, Amsterdam, the Netherlands. Electronic address: https://twitter.com/BurgersVivian.
M J van den BentErasmus University Medical Center, Department of Neurology, Rotterdam, the Netherlands.
A-S E DarlingtonUniversity of Southampton, School of Health Sciences, Southampton, UK.
A E Gualthérie van WeezelNetherlands Cancer Institute-Antoni van Leeuwenhoek, Center for Quality of Life, Amsterdam, the Netherlands.
A CompterNetherlands Cancer Institute-Antoni van Leeuwenhoek, Department of Medical Oncology, Amsterdam, the Netherlands.
J M TrompAmsterdam University Medical Centers, Department of Medical Oncology, Amsterdam, the Netherlands.
R I LalisangMaastricht University Medical Centers, Internal Medicine, Division Medical Oncology, Maastricht, the Netherlands; Maastricht University Medical Centers, GROW-School of Oncology and Developmental Biology, Maastricht, the Netherlands.
M C M KouwenhovenAmsterdam University Medical Centers, Vrije Universiteit Amsterdam, Department of Neurology, Amsterdam, the Netherlands; Brain Tumor Center Amsterdam, Cancer Center Amsterdam, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands.
L DirvenLeiden University Medical Centre, Department of Neurology, Leiden, the Netherlands; Haaglanden Medical Center, Department of Neurology, The Hague, the Netherlands.
N C G L HarthoornAYA Research Partner, Amsterdam, the Netherlands.
C A Troost-HeijboerAYA Research Partner, Amsterdam, the Netherlands.
O HussonNetherlands Cancer Institute, Psychosocial Research and Epidemiology Department, Amsterdam, the Netherlands; Netherlands Cancer Institute-Antoni van Leeuwenhoek, Department of Medical Oncology, Amsterdam, the Netherlands; Erasmus University Medical Center, Department of Surgical Oncology, Rotterdam, the Netherlands; Institute of Cancer Research, Division of Clinical Studies, London, UK. Electronic address: olga.husson@icr.ac.uk.
W T A van der GraafNetherlands Cancer Institute-Antoni van Leeuwenhoek, Department of Medical Oncology, Amsterdam, the Netherlands; Erasmus University Medical Center, Department of Medical oncology, the Netherlands. Electronic address: https://twitter.com/Winette_vdGraaf.
Erasmus MC · NLThe Netherlands Cancer Institute · NLAmsterdam University Medical Centers · NLMaastricht University · NLMedisch Centrum Haaglanden · NLUniversity of Southampton · GB

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundAdolescents and young adults (AYAs, aged 18-39 years) with advanced cancer have an increased life expectancy due to improvements and refinements in cancer therapies, resulting in a growing group of AYAs living with an uncertain and/or poor cancer prognosis (UPCP). To date, no studies have examined the difficulties of health care professionals (HCPs) providing care to AYAs with a UPCP. This study aimed to understand the challenges in daily clinical practice experienced by HCPs from different disciplines who provide palliative as well as general care to AYAs with a UPCP.

methodsHCPs from a variety of backgrounds (e.g. clinical nurse specialists, medical oncologists, neurologists psychologists) were invited for a semi-structured interview. The interviews were transcribed verbatim and analysed using reflexive thematic analysis. Two AYA patients were actively involved as research partners to increase the relevance of the study design and to optimise interpretation of results.

resultsForty-nine HCPs were interviewed. Overall, we found that the threat of premature death within this young patient group increased emotional impact on HCPs and evoked a feeling of unfairness, which was an extra motivation for HCPs to provide the most optimal care possible. We generated four key themes: (i) emotional confrontation (e.g. feeling helplessness and experiencing a greater sense of empathy), (ii) questioning own professional attitude and skills, (iii) navigating uncertainty (e.g. discussing prognosis and end of life) and (iv) obstacles in the health care organisation (e.g. lack of knowledge and clarity about responsibilities).

conclusionsHCPs experienced unique emotional and practical challenges when providing care to AYAs with a UPCP. The results from this study highlight the need to develop an education module for HCPs treating AYAs with UPCP to increase their own well-being and optimise the delivery of person- and age-adjusted care.

Indexed as

Health PersonnelNeoplasmsAdolescentHumansPrognosisUncertaintyYoung Adultadolescents and young adultshealth care professionalspalliative carepoor or uncertain cancer prognosisqualitative research

Identifiers

PMID35533426
PMCPMC9271469
OpenAlexW4229024369

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

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 OpenQuestion graph.