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


CONCLUSIONS
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%.
1 Cancer Division, University College London Hospitals NHS Foundation Trust , London, United Kingdom .
Rachel M
RM
Taylor
1 Cancer Division, University College London Hospitals NHS Foundation Trust , London, United Kingdom .
Natasha
N
Aslam
2 Faculty of Health and Wellbeing, Canterbury Christ Church University , Kent, United Kingdom .
Sarah
S
Lea
1 Cancer Division, University College London Hospitals NHS Foundation Trust , London, United Kingdom .
Jeremy S
JS
Whelan
1 Cancer Division, University College London Hospitals NHS Foundation Trust , London, United Kingdom .
Lorna A
LA
Fern
D000293:Adolescent; D000367:Age Factors; D015331:Cohort Studies; D017144:Focus Groups; D006801:Humans; D008137:Longitudinal Studies; D008495:Medical Oncology / Q000592:standards*; D009369:Neoplasms / Q000453:epidemiology / Q000523:psychology / Q000628:therapy*; D010358:Patient Participation / Q000379:methods* / Q000523:psychology / Q000706:statistics & numerical data; D017060:Patient Satisfaction / Q000706:statistics & numerical data*; D011787:Quality of Health Care; D013038:Specialization / Q000592:standards*; D011795:Surveys and Questionnaires; D000078329:Workforce; D055815:Young Adult
BRIGHTLIGHT; cohort study; longitudinal research; patient involvement/engagement; retention