title: Phase 1 in the development of a patient-reported measure to quantify perceived inconvenience of radiotherapy: generation of issues.
abstract: Current patient-reported measures (PROMs) do not specifically address radiotherapy (RT) related inconvenience. We conducted, as per guidelines of the European Organization for Research and Treatment of Cancer (EORTC), the initial (issue generation) phase of development of a RT inconvenience PROM. Specifically, we aimed to develop a conceptual framework for RT inconvenience and generate a comprehensive list of issues pertaining to it.
  
  
  
  We reviewed existing PROMs and literature and gathered qualitative and quantitative data from consumers and health professionals, in order to generate a comprehensive list of issues pertaining to RT inconvenience. A framework for the consideration of RT inconvenience was defined and used to ensure all possible issues were explored and to list the issues into conceptual domains.
  
  
  
  Qualitative data from 26 consumers and 30 health professionals, and quantitative data from 1191 consumers and 253 health professionals resulted in the identification of 38 issues grouped into five conceptual domains: (1) inconvenience of RT opportunity, (2) inconvenience of decision-making, (3) inconvenience of treatment, (4) inconvenience of side effects, and (5) inconvenience of follow-up.
  
  
  
  This list of RT inconvenience issues will, in future work, be operationalized into a set of items for pretesting and then large-scale field testing as per the EORTC guidelines.
authors.affiliation: Central Clinical School, Sydney Medical School, University of Sydney, Sydney, NSW, Australia. purnima.sundaresan@sydney.edu.au.
authors.forename: P
authors.initials: P
authors.lastname: Sundaresan
authors.affiliation: Central Clinical School, Sydney Medical School, University of Sydney, Sydney, NSW, Australia.|Chris O'Brien Life House, Sydney, NSW, Australia.
authors.forename: C G
authors.initials: CG
authors.lastname: Milross
authors.affiliation: Central Clinical School, Sydney Medical School, University of Sydney, Sydney, NSW, Australia.|Clinical Trials Centre, National Health and Medical Research Centre, Sydney, NSW, Australia.
authors.forename: M R
authors.initials: MR
authors.lastname: Stockler
authors.affiliation: Psycho-Oncology Cooperative Research Group (PoCoG), University of Sydney, Sydney, NSW, Australia.
authors.forename: D S J
authors.initials: DS
authors.lastname: Costa
authors.affiliation: Central Clinical School, Sydney Medical School, University of Sydney, Sydney, NSW, Australia.|Psycho-Oncology Cooperative Research Group (PoCoG), University of Sydney, Sydney, NSW, Australia.
authors.forename: M T
authors.initials: MT
authors.lastname: King
mesh_terms: D003657:Decision Making; D006801:Humans; D000071066:Patient Reported Outcome Measures; D010465:Perception; D011788:Quality of Life / Q000523:psychology*; D011878:Radiotherapy
keywords: Access; Decision-making; Inconvenience; Preference; Radiation therapy; Radiotherapy; Uptake; Utilization