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The perceptions of teenagers, young adults and professionals in the participation of bone cancer clinical trials.

Pearce, S, Brownsdon, A, Fern, L, Gibson, F, Whelan, J and Lavender, V (2016) The perceptions of teenagers, young adults and professionals in the participation of bone cancer clinical trials. Eur J Cancer Care (Engl).

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Abstract

The reasons why teenagers and young adults (TYA) with cancer do, or do not, participate in clinical trials is not wholly understood. We explored the perceptions and experiences of young people with bone cancer, and health professionals involved in their care, with regard to participation in two clinical trials. We conducted semi-structured interviews using narrative inquiry with 21 young people aged 15-24 years and 18 health professionals. New understandings emerged about perceptions of, and factors that influence participation in, clinical trials. These include perceptions about the importance and design of the clinical trial, communicating with young people in an age-specific manner, using language young people are comfortable with, support from family, peers and specialists in teenage and young adult cancer care. We conclude that addressing these factors may increase acceptability of clinical trials and the trial design for TYA with cancer and ultimately improve their participation. Qualitative research has an important role in making explicit the perceptions and practices that ensure trials are patient-centred, appropriate and communicated effectively to TYA. Translating knowledge gained into routine practice, will go some way in ensuring that the disparities affecting this population are more fully understood.

Item Type: Article
Subjects : Biosciences
Divisions : Faculty of Health and Medical Sciences > School of Biosciences and Medicine
Authors :
AuthorsEmailORCID
Pearce, SUNSPECIFIEDUNSPECIFIED
Brownsdon, AUNSPECIFIEDUNSPECIFIED
Fern, LUNSPECIFIEDUNSPECIFIED
Gibson, FUNSPECIFIEDUNSPECIFIED
Whelan, JUNSPECIFIEDUNSPECIFIED
Lavender, VUNSPECIFIEDUNSPECIFIED
Date : 3 March 2016
Identification Number : 10.1111/ecc.12476
Copyright Disclaimer : This is the peer reviewed version of the following article: Pearce S., Brownsdon A., Fern L., Gibson F., Whelan J. & Lavender V. (2016) European Journal of Cancer Care The perceptions of teenagers, young adults and professionals in the participation of bone cancer clinical trials, which has been published in final form at http://dx.doi.org/10.1111/ecc.12476. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving
Uncontrolled Keywords : adolescent, cancer, clinical trial, narrative inquiry, teenager, young adult
Related URLs :
Depositing User : Symplectic Elements
Date Deposited : 28 Jun 2016 10:11
Last Modified : 11 Nov 2016 17:17
URI: http://epubs.surrey.ac.uk/id/eprint/811061

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