HeathLEHeeneyMMHoppeCCet al. Successful utilization of an electronic pain diary in a multinational phase 3 interventional study of pediatric sickle cell anemia. Clin Trials, IN PRESS.
3.
CharacheSTerrinMLMooreRDet al. Effect of hydroxyurea on the frequency of painful crises in sickle cell anemia. N Engl J Med1995; 332: 1317–1322.
MaxwellKStreetlyABevanD. Experiences of hospital care and treatment seeking for pain from sickle cell disease: qualitative study. BMJ1999; 318: 1585–1590.
HaywoodCJLanzkronSRatanawongsaNet al. Hospital self-discharge among adults with sickle-cell disease (SCD): associations with trust and interpersonal experiences with care. J Hosp Med2010; 5: 289–294.
8.
SmithWPenberthyLBovbjergVet al. Daily assessment of pain in adults with sickle cell disease. Ann Intern Med2008; 148: 94–101.
MatzaLPatrickDLRileyAWet al. Pediatric patient-reported outcome instruments for research to support medical product labeling: report of the ISPOR PRO good research practices for the assessment of children and adolescents task force. Value Health2013; 16: 461–479.
11.
HuangIRevickiDSchwartzC. Measuring pediatric patient-reported outcomes: good progress but a long way to go. Qual Life Res2014; 23: 747–750.
12.
SunHPapadopoulosEJHyamsJSet al. Well-defined and reliable clinical outcome assessments for pediatric Crohn disease: a critical need for drug development. J Pediatr Gastroenterol Nutr2015; 60: 729–736.
13.
KabaliHKIrigoyenMMNunez-DavisRet al. Exposure and use of mobile media devices by young children. Pediatrics2015; 136: 1044–1050.
14.
ReeveBBWithycombeJSBakerJNet al. The first step to integrating the child’s voice in adverse event reporting in oncology trials: a content validation study among pediatric oncology clinicians. Pediatr Blood Cancer2013; 60: 1231–1236.