Facilitating individuals and families affected by fragile X syndrome to participate in medication trials.
Background: Recently, there has been an increasing number of trials of medications for fragile X syndrome (FXS). In order to be adequately powered, trials have involved many centres around the world with relatively small numbers of participants recruited at each site. This study aims to understand t...
| Publicado en: | Journal of Intellectual Disability Research Vol. 64; no. 11; pp. 864 - 875 |
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| Autores principales: | , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Wiley-Blackwell
Nov2020
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=146429069&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 146429069 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 09642633 EUL jtl: Journal of Intellectual Disability Research issn: 09642633 maglogo: Y pubinfo: dt: Nov2020 vid: 64 iid: 11 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 146429069 145980892 146429069 146429069 10.1111/jir.12779 146429069 ppf: 864 ppct: 11 formats: fmt: – @attributes: type: T – @attributes: type: C – @attributes: type: P tig: atl: Facilitating individuals and families affected by fragile X syndrome to participate in medication trials. aug: au: Eley, S. E. A. McKechanie, A. G. Campbell, S. Stanfield, A. C. affil: Patrick Wild Centre, Division of Psychiatry, University of Edinburgh, Edinburgh, UK sug: subj: Fragile X Syndrome Clinical Trials Research Subjects Consumer Participation Human Multimethod Studies Quantitative Studies Qualitative Studies Social Media Questionnaires Focus Groups Motivation Research Subject Recruitment ab: Background: Recently, there has been an increasing number of trials of medications for fragile X syndrome (FXS). In order to be adequately powered, trials have involved many centres around the world with relatively small numbers of participants recruited at each site. This study aims to understand the barriers to, and how best to facilitate participation in, medication trials in order to improve recruitment and the experience of participants with FXS. Methods: A mixed methods design was used to collect both quantitative and qualitative data. Participants were invited to participate through the UK Fragile X Society, a local mailing list and through social media. Those who agreed to participate completed a quantitative questionnaire and indicated whether they would be willing to participate in a follow‐up focus group. Results: The questionnaire was completed by 328 individuals who either had FXS, or were a parent, carer or family member of an individual with FXS. Over two‐thirds of participants reported concern about side effects, while over one‐third mentioned swallowing tablets, blood tests, financial aspects and travel as barriers to participation. Focus groups with 12 individuals highlighted themes of trial challenges, strategies to overcome these and motivating factors to participate. Conclusions: Many of the factors, which potentially negatively influence participation in a clinical trial for FXS, could be mitigated in relatively simple ways. Easily accessible information, particularly about safety issues, the research team and the trial environment should be standard practice. Desensitisation programmes for blood testing, provision of different preparations of medication (e.g. liquid) and use of a combination of local, remote and site visits to reduce travel and time should also be considered. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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