title: Brief Report: Adolescents' Reasons for Participating in a Health Care Transition Intervention Study.
abstract: OBJECTIVE
  This study investigated the reasons adolescents with spina bifida consented or assented to participate in a randomized controlled prospective health care transition intervention study.
  
  
  METHODS
  Sixty-five adolescents with spina bifida (SB), ages 14 to 18 years, who had previously participated in the Transition Preparation Training Program (TPT) study were recruited for the current study. A total of 26 consents/assents were obtained; a total of 25 questionnaires were returned (11 treatment; 14 control). Study findings were from a sample of 25 adolescents, aged 14 to 20 years who had participated in a randomized controlled prospective study entitled the Transition Preparation Training Program (TPT). Content analysis was used to code and analyze data.
  
  
  RESULTS
  Study findings revealed adolescents indicated several reasons for choosing to participate in the research study. Major reasons cited for their participation were related to the desire to learn more about their condition and for altruistic purposes. Numerous reasons were offered by respondents as to why adolescents declined to participate in the research study; feelings of discomfort and issues of privacy were cited. Sixty-four percent of the respondents indicated the offer of a research incentive did not affect their decision to participate in the TPT study. Other findings are reported as to the use of research incentives and future recruitment recommendations.
  
  
  CONCLUSIONS
  Youth shared a number of reasons and insights about recruitment strategies that may be helpful for future research efforts, especially those studies involving adolescents with special health care needs who participate in health care transition research.
authors.affiliation: USC Keck School of Medicine, Los Angeles, CA; University of Southern California University Center of Excellence for Developmental Disabilities, Los Angeles, CA. Electronic address: kasmith@chla.usc.edu.
authors.forename: Kathryn A
authors.initials: KA
authors.lastname: Smith
authors.affiliation: University of Southern California University Center of Excellence for Developmental Disabilities, Los Angeles, CA.
authors.forename: Kristy
authors.initials: K
authors.lastname: Macias
authors.affiliation: Los Angeles County Department of Public Health, Los Angeles, CA.
authors.forename: Kim
authors.initials: K
authors.lastname: Bui
authors.affiliation: USC Keck School of Medicine, Los Angeles, CA; University of Southern California University Center of Excellence for Developmental Disabilities, Los Angeles, CA.
authors.forename: Cecily L
authors.initials: CL
authors.lastname: Betz
mesh_terms: D000293:Adolescent; D000294:Adolescent Behavior / Q000502:physiology / Q000523:psychology; D002140:California; D003657:Decision Making; D005260:Female; D006801:Humans; D008297:Male; D020380:Needs Assessment; D010342:Patient Acceptance of Health Care / Q000706:statistics & numerical data*; D010349:Patient Compliance / Q000706:statistics & numerical data*; D018579:Patient Selection; D011446:Prospective Studies; D016135:Spinal Dysraphism / Q000175:diagnosis / Q000628:therapy*; D060305:Transition to Adult Care / Q000458:organization & administration*; D055815:Young Adult
keywords: Adolescents; Emerging adults; Health care transition; Research participation