title: Feasibility of frequent patient-reported outcome surveillance in patients undergoing hematopoietic cell transplantation.
abstract: Patient-reported outcomes (PROs), including symptoms and health-related quality of life (HRQOL), provide a patient-centered description of hematopoietic cell transplantation (HCT)-related toxicity. These data characterize the patient experience after HCT and may have prognostic usefulness for long-term outcomes after HCT. We conducted a study of 32 patients after HCT (10 autologous HCT recipients, 11 full-intensity conditioning allogeneic HCT recipients, and 11 reduced-intensity conditioning allogeneic HCT recipients) to determine the feasibility of weekly electronic PRO collection from HCT until day (D) +100. We used questions from the PRO version of the Common Terminology Criteria for Adverse Events to capture symptoms, and the Patient-Reported Outcomes Measurement Information System Global Health scale to measure physical and mental HRQOL. The vast majority (94%) of patients used the electronic PRO system, with only 6% opting for paper-and-pencil only. The median weekly percentage of participants who completed the surveys was 100% in all cohorts through hospital discharge, and remained 100% for the autologous HCT and reduced-intensity allogeneic HCT cohorts through D+100. Patients were satisfied with the electronic system, giving high marks for readability, comfort, and questionnaire length. Symptom severity varied by absolute level and type of symptom across the 3 cohorts, with the full-intensity allogeneic HCT cohort exhibiting the greatest median overall symptom severity, peaking at D+7. Median physical health HRQOL scores decreased with time in the 3 cohorts, and HRQOL was generally correlated with overall symptom severity. Our results demonstrate the feasibility of frequent electronic PROs in the early post-HCT period. Future studies in larger populations to explore predictive models using frequent PRO data for outcomes, including long-term HRQOL and survival, are warranted.
authors.affiliation: Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, NC 27599, USA. wwood@unch.unc.edu
authors.forename: William A
authors.initials: WA
authors.lastname: Wood
authors.forename: Allison M
authors.initials: AM
authors.lastname: Deal
authors.forename: Amy
authors.initials: A
authors.lastname: Abernethy
authors.forename: Ethan
authors.initials: E
authors.lastname: Basch
authors.forename: Claudio
authors.initials: C
authors.lastname: Battaglini
authors.forename: Yoon Hie
authors.initials: YH
authors.lastname: Kim
authors.forename: Julia
authors.initials: J
authors.lastname: Whitley
authors.forename: Charlotte
authors.initials: C
authors.lastname: Shatten
authors.forename: Jon
authors.initials: J
authors.lastname: Serody
authors.forename: Thomas
authors.initials: T
authors.lastname: Shea
authors.forename: Bryce B
authors.initials: BB
authors.lastname: Reeve
mesh_terms: D000368:Aged; D057286:Electronic Health Records / Q000458:organization & administration; D005260:Female; D018380:Hematopoietic Stem Cell Transplantation / Q000523:psychology*; D006801:Humans; D007938:Leukemia / Q000473:pathology / Q000523:psychology* / Q000628:therapy; D008297:Male; D008875:Middle Aged; D009101:Multiple Myeloma / Q000473:pathology / Q000523:psychology* / Q000628:therapy; D019653:Myeloablative Agonists / Q000494:pharmacology / Q000627:therapeutic use; D011788:Quality of Life; D057566:Self Report; D012720:Severity of Illness Index; D019172:Transplantation Conditioning; D014182:Transplantation, Autologous; D014184:Transplantation, Homologous
chemical_list: D019653:Myeloablative Agonists