title: Communicating cancer treatment information using the Web: utilizing the patient's perspective in website development.
abstract: BACKGROUND
  Online cancer information can support patients in making treatment decisions. However, such information may not be adequately tailored to the patient's perspective, particularly if healthcare professionals do not sufficiently engage patient groups when developing online information. We applied qualitative user testing during the development of a patient information website on stereotactic ablative radiotherapy (SABR), a new guideline-recommended curative treatment for early-stage lung cancer.
  
  
  METHODS
  We recruited 27 participants who included patients referred for SABR and their relatives. A qualitative user test of the website was performed in 18 subjects, followed by an additional evaluation by users after website redesign (N = 9). We primarily used the 'thinking aloud' approach and semi-structured interviewing. Qualitative data analysis was performed to assess the main findings reported by the participants.
  
  
  RESULTS
  Study participants preferred receiving different information that had been provided initially. Problems identified with the online information related to comprehending medical terminology, understanding the scientific evidence regarding SABR, and appreciating the side-effects associated with SABR. Following redesign of the website, participants reported fewer problems with understanding content, and some additional recommendations for better online information were identified.
  
  
  CONCLUSIONS
  Our findings indicate that input from patients and their relatives allows for a more comprehensive and usable website for providing treatment information. Such a website can facilitate improved patient participation in treatment decision-making for cancer.
authors.affiliation: Department of Public and Occupational Health, EMGO+ Institute for Health and care research, VU University Medical Center, Van der Boechorststraat 7, 1081 BT, Amsterdam, The Netherlands. w.hopmans@vumc.nl.|Department of Radiation Oncology, VU University Medical Center, De Boelelaan 1117, 1007MB, Amsterdam, The Netherlands. w.hopmans@vumc.nl.
authors.forename: Wendy
authors.initials: W
authors.lastname: Hopmans
authors.affiliation: Department of Public and Occupational Health, EMGO+ Institute for Health and care research, VU University Medical Center, Van der Boechorststraat 7, 1081 BT, Amsterdam, The Netherlands. o.damman@vumc.nl.
authors.forename: Olga C
authors.initials: OC
authors.lastname: Damman
authors.affiliation: Department of Public and Occupational Health, EMGO+ Institute for Health and care research, VU University Medical Center, Van der Boechorststraat 7, 1081 BT, Amsterdam, The Netherlands. drm.timmermans@vumc.nl.
authors.forename: Danielle R M
authors.initials: DR
authors.lastname: Timmermans
authors.affiliation: Department of Radiation Oncology, VU University Medical Center, De Boelelaan 1117, 1007MB, Amsterdam, The Netherlands. cja.haasbeek@vumc.nl.
authors.forename: Cornelis J A
authors.initials: CJ
authors.lastname: Haasbeek
authors.affiliation: Department of Radiation Oncology, VU University Medical Center, De Boelelaan 1117, 1007MB, Amsterdam, The Netherlands. bj.slotman@vumc.nl.
authors.forename: Ben J
authors.initials: BJ
authors.lastname: Slotman
authors.affiliation: Department of Radiation Oncology, VU University Medical Center, De Boelelaan 1117, 1007MB, Amsterdam, The Netherlands. s.senan@vumc.nl.
authors.forename: Suresh
authors.initials: S
authors.lastname: Senan
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D032882:Comprehension; D054626:Consumer Health Information / Q000458:organization & administration* / Q000592:standards; D003657:Decision Making; D005260:Female; D057220:Health Literacy; D006801:Humans; D020407:Internet; D008175:Lung Neoplasms / Q000523:psychology / Q000532:radiotherapy*; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic / Q000379:methods / Q000592:standards*; D010358:Patient Participation; D016730:Program Development / Q000379:methods; D036301:Qualitative Research; D016634:Radiosurgery / Q000379:methods*; D009626:Terminology as Topic