title: Development, feasibility and compliance of a web-based system for very frequent QOL and symptom home self-assessment after hematopoietic stem cell transplantation.
abstract: We believe that many adverse events following hematopoietic stem cell transplantation (HSCT), particularly relapse and chronic graft-versus-host disease (CGVHD), are preceded by a subclinical period of development that is accessible by frequent psychometric assessment. Documenting these associations could improve future clinical care by extending the potential window for intervention. However, conventional methods of assessing quantity of lite (QOL) in patients in their homes, typically by mailed self-assessment questionnaires, are impractical for very frequent administration. We have developed and implemented a web-based system for measuring short-term (dynamic) changes in QOL by employing brief, online, daily QOL assessments and more extensive, monthly online assessments from patients' homes. Here we report the feasibility of collecting very frequent patient home self-assessments of QOL via the web for a 52 week participation period; we detail incidence of home web access, accrual, compliance, and satisfaction with the system in an HSCT patient sample. We also describe our integrated web-systems for administering patient recruitment, scheduling, monitoring, and analysis. Our results suggest that very frequent routine collection of QOL outcomes is entirely feasible using our web-based home assessment tool, with good patient compliance and high user satisfaction. We believe our methodology shows great promise for use with other cancer and health populations.
authors.affiliation: Fred Hutchinson Cancer Research Center, Seattle, Washington 98109-1024, USA. nbush@fhcrc.org
authors.forename: N
authors.initials: N
authors.lastname: Bush
authors.forename: G
authors.initials: G
authors.lastname: Donaldson
authors.forename: C
authors.initials: C
authors.lastname: Moinpour
authors.forename: M
authors.initials: M
authors.lastname: Haberman
authors.forename: D
authors.initials: D
authors.lastname: Milliken
authors.forename: V
authors.initials: V
authors.lastname: Markle
authors.forename: J
authors.initials: J
authors.lastname: Lauson
mesh_terms: D000328:Adult; D000368:Aged; D005240:Feasibility Studies; D005260:Female; D018380:Hematopoietic Stem Cell Transplantation / Q000523:psychology*; D006801:Humans; D020407:Internet; D008297:Male; D008875:Middle Aged; D010349:Patient Compliance; D011788:Quality of Life; D012647:Self-Assessment; D014861:Washington