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Optimizing a Retention Strategy with Young People for BRIGHTLIGHT, a Longitudinal Cohort Study Examining the Value of Specialist Cancer Care for Young People

Taylor, RM; Aslam, N; Lea, S; Whelan, JS; Fern, LA; (2017) Optimizing a Retention Strategy with Young People for BRIGHTLIGHT, a Longitudinal Cohort Study Examining the Value of Specialist Cancer Care for Young People. Journal of Adolescent and Young Adult Oncology , 6 (3) pp. 459-469. 10.1089/jayao.2016.0085. Green open access

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Taylor_Optimizing a Retention Strategy with Young People for BRIGHTLIGHT, a Longitudinal Cohort Study Examining the Value of Specialist Cancer Care for Young People_AAM.pdf - Accepted version

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[thumbnail of Figure 1 BRIGHTLIGHT wristband 'reward' for participation.tif]
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Abstract

PURPOSE: To maximize retention of participants in a longitudinal cohort study, we sought to understand young peoples' views about barriers and facilitators to continuing study participation. METHODS: Ten young people with a previous cancer diagnosis aged 15-24 participated in a 1 day workshop. The workshop used participatory methodology consisting of three exercises as follows: role play/scene setting; force field analysis of research participation in small groups; and focus group discussion. A final prioritization exercise was administered individually after the workshop. RESULTS: Twenty-four barriers to maintaining participation were summarized in five themes as follows: life commitments; concerns specific to the study; emotional barriers; practical barriers; and other reasons. The top 3 specific barriers were as follows: not a priority/other things are more important; too time consuming; and forgetting/memory. The top 3 facilitators for participation were as follows: wishing to help other young people; giving back to the cancer community; and honoring an initial commitment to participation. The top 3 suggested solutions to encourage continued participation were as follows: reminder text message or email before each survey to check preferred method of delivery; breaking up the online survey into modules to make completion less overwhelming; and consolidation of study information in one location. CONCLUSION: Involving young people in designing a retention strategy for young people with cancer has informed the BRIGHTLIGHT retention strategy. Patient and public involvement is imperative for successful research but measuring impact is challenging. The success of implementing the changes to optimize retention was shown in the increase in retention in Wave 3 from 30% to final participation of 58%.

Type: Article
Title: Optimizing a Retention Strategy with Young People for BRIGHTLIGHT, a Longitudinal Cohort Study Examining the Value of Specialist Cancer Care for Young People
Location: United States
Open access status: An open access version is available from UCL Discovery
DOI: 10.1089/jayao.2016.0085
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher's terms and conditions.
Keywords: BRIGHTLIGHT, cohort study, longitudinal research, patient involvement/engagement, retention, Adolescent, Age Factors, Cohort Studies, Focus Groups, Humans, Longitudinal Studies, Medical Oncology, Neoplasms, Patient Participation, Patient Satisfaction, Quality of Health Care, Specialization, Surveys and Questionnaires, Workforce, Young Adult
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Cancer Institute
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL EGA Institute for Womens Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL EGA Institute for Womens Health > Maternal and Fetal Medicine
URI: https://discovery.ucl.ac.uk/id/eprint/10124587
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