Recruitment and Retention of Older Adolescent and Young Adult Female Survivors of Childhood Cancer in Longitudinal Research

Abstract

Purpose/Objectives To describe the challenges encountered in the recruitment and retention of a sample of older adolescent and young adult female survivors of childhood cancer for a longitudinal study testing a targeted psychosocial intervention aimed at enhancing hope. Data Sources Published literature on constructing longitudinal intervention studies and strategies in the recruitment and retention of childhood cancer survivors in research was used to develop the protocol of this study. Data Synthesis Using empirical literature to construct the study’s design resulted in achieving certain goals for the design, but not in the recruitment and retention of study participants. Using online technology to deliver the intervention and collect data was efficient and effective. Traditional approaches to recruitment and retention of those survivors, however, were not effective. Use of more novel approaches to enroll study participants demonstrated only modest success. Conclusions Additional research is needed on strategies to successfully recruit and retain older adolescents and young adult female survivors of childhood cancer in longitudinal intervention studies. Implications for Nursing The improvement in the psychological well-being of female survivors of childhood cancer remains an important outcome in ongoing care. The need to continue to identify creative and effective ways to recruit and retain those survivors is warranted.

A Diversified Recruitment Approach Incorporating Social Media Leads to Research Participation Among Young Adult-Aged Female Cancer Survivors

“…Incorporating internet-based consent procedures and surveys, along with multiple modes of participant communication (email, telephone, Facebook) may also improve recruitment, particularly for studies involving sensitive subject matter. 12,27,28 Combined outreach through healthcare providers and members of survivorship and advocacy groups may improve recruitment.…”

“…[5][6][7][8][9][10] Our limited understanding of how best to address these and other long-term survivorship care needs may be partly related to difficulties recruiting young survivors for research studies. [11][12][13][14] Several factors contribute to recruitment challenges in AYA-aged survivors. [11][12][13][14] Since they constitute only 5% of the cancer survivor population in the United States, 15 the number of AYA-aged survivors seen at individual medical facilities is limited.…”

“…[11][12][13][14] Several factors contribute to recruitment challenges in AYA-aged survivors. [11][12][13][14] Since they constitute only 5% of the cancer survivor population in the United States, 15 the number of AYA-aged survivors seen at individual medical facilities is limited. While cancer cooperative groups provide infrastructure for studies with multi-site recruitment, most of these studies focus on treatment 16 and these groups are less focused on studying survivorship issues.…”

“…This diffusion of healthcare services makes it challenging to recruit survivors for studies conducted at large hospitals and clinics. 12 Optimal recruitment strategies for AYA-aged cancer survivors are unknown.…”

Author reply

“…Given that annually approximately 1000 AYA are diagnosed with cancer Australia wide, research delays of 273 days could translate to up to 724 newly diagnosed AYA missing the opportunity to be recruited to a national trial . Governance‐related delays compound the existing challenges of recruiting AYA to research, potentially adding to the ‘gap’ between outcomes for AYA and adult cancer patients.…”