title: Value judgements that matter to patients remain implicit in oncology guidelines: an observational study.
abstract: BACKGROUND
  Clinical practice guidelines are often evidence-based. However, it is inevitable that there are value judgements in the practical recommendations contained in the guidelines. In order to see if patients are ultimately being supplied with sufficient information to help them make treatment decision, we determined 1) which value judgements influence the process of developing guidelines for palliative chemotherapy, and 2) whether these value judgements were made explicit in the final guideline report.
  
  
  METHODS
  We studied the development process of six Dutch oncology guidelines in which palliative chemotherapy plays a substantial role. We observed the guideline development groups (GDGs), conducted semi-structured interviews with individual GDG members (including the chairs), and analysed the minutes of GDG meetings and subsequent versions of the guidelines. A value judgement was defined as a statement about the value of a patient outcome with regard to palliative chemotherapy.
  
  
  RESULTS
  We identified the following value judgements in the process of guideline development: 1) consensus on what should be considered as valuable minimum patient outcomes, 2) preference for tailored treatment in situations where there is no evidence of treatment effect, 3) preference for 'doing something' even when there is sufficient evidence of no effect, and 4) the patient outcome of 'prolonging life'. These value judgements, however, were not reported in the final guideline.
  
  
  CONCLUSIONS
  At least the last two value judgements mentioned are relevant for patients with incurable metastatic cancer in making decisions whether to undergo chemotherapy and what kind. Value judgements should be made explicit in guidelines, so that clinicians can transparently discuss treatment options with individual patients.
authors.affiliation: Department of General Practice (J2-225), Division of Clinical Methods & Public Health, Academic Medical Center/University of Amsterdam, Amsterdam, the Netherlands. s.j.dekort@amc.uva.nl
authors.forename: S J
authors.initials: SJ
authors.lastname: de Kort
authors.forename: J S
authors.initials: JS
authors.lastname: Burgers
authors.forename: D L
authors.initials: DL
authors.lastname: Willems
mesh_terms: D000970:Antineoplastic Agents / Q000627:therapeutic use*; D000971:Antineoplastic Combined Chemotherapy Protocols / Q000592:standards*; D006801:Humans; D007407:Interviews as Topic; D008137:Longitudinal Studies; D009369:Neoplasms / Q000188:drug therapy*; D009426:Netherlands; D010166:Palliative Care / Q000592:standards*; D017410:Practice Guidelines as Topic / Q000592:standards*; D036301:Qualitative Research
chemical_list: D000970:Antineoplastic Agents