title: Feasibility and acceptability of the patient-reported outcomes measurement information system measures in children and adolescents in active cancer treatment and survivorship.
abstract: BACKGROUND
  Patient-reported outcomes related to symptoms, function, and quality of life during and following cancer treatment can guide care for pediatric cancer patients. To advance the science of patient-reported outcomes, the National Institutes of Health funded the Patient-Reported Outcomes Measurement Information System (PROMIS).
  
  
  OBJECTIVE
  The objective of this study was to assess feasibility and acceptability of the PROMIS pediatric measures, as defined by enrollment and attrition rates as well as missingness by measure, item, participant, and assessment time point.
  
  
  METHODS
  Eight- to 18-year-olds participated in 2 studies: PROMIS I, a cross-sectional study of children in active cancer treatment or survivorship, and PROMIS II, a longitudinal study with 3 assessment time points for children receiving curative treatment.
  
  
  RESULTS
  PROMIS I (n = 200) and PROMIS II (n = 94) had enrollment rates of 92.5% and 89.7%, respectively. For PROMIS I, measure missingness was acceptable (8% missed any measures) and was not related to other study variables. For PROMIS II, measure missingness was minimal (0.8%), and item-level missingness was relatively low. In general, items that were skipped asked about experiences that participants had not encountered in the past 7 days.
  
  
  CONCLUSIONS
  In both studies, the PROMIS instruments demonstrated good feasibility and acceptability among pediatric cancer patients. Overall, we had high enrollment, low attrition, and acceptable rates of measure and item missingness.
  
  
  CONCLUSIONS
  Our results demonstrate that PROMIS measures are acceptable to 8- to 18-year-olds in different points of cancer care and feasible for use in pediatric cancer inpatient and outpatient settings.
authors.affiliation: Author Affiliations: Department of Nursing Research and Quality Outcomes (Ms Menard and Dr Hinds), Division of Nursing (Ms Cranston), Division of Oncology (Dr Jacobs), and Division of Biostatistics and Study Methodology (Dr Wang), Children's National Medical Center; and The George Washington University (Drs Hinds, Jacobs, and Wang), Washington, DC; and Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, North Carolina (Ms Gross and Dr DeWalt).
authors.forename: Johanna C
authors.initials: JC
authors.lastname: Menard
authors.forename: Pamela S
authors.initials: PS
authors.lastname: Hinds
authors.forename: Shana S
authors.initials: SS
authors.lastname: Jacobs
authors.forename: Katie
authors.initials: K
authors.lastname: Cranston
authors.forename: Jichuan
authors.initials: J
authors.lastname: Wang
authors.forename: Darren A
authors.initials: DA
authors.lastname: DeWalt
authors.forename: Heather E
authors.initials: HE
authors.lastname: Gross
mesh_terms: D000293:Adolescent; D017024:Chemotherapy, Adjuvant / Q000451:nursing; D002648:Child; D003430:Cross-Sectional Studies; D005240:Feasibility Studies; D005260:Female; D005500:Follow-Up Studies; D063005:Health Information Systems; D006751:Hospital Information Systems; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008495:Medical Oncology; D009369:Neoplasms / Q000451:nursing* / Q000628:therapy; D063868:Patient Outcome Assessment; D011182:Postoperative Care; D011594:Psychometrics; D011788:Quality of Life; D015203:Reproducibility of Results; D018570:Risk Assessment; D012307:Risk Factors; D011795:Surveys and Questionnaires; D017741:Survivors; D014481:United States
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