title: A validated risk score to estimate mortality risk in patients with dementia and pneumonia: barriers to clinical impact.
abstract: BACKGROUND
  The clinical impact of risk score use in end-of-life settings is unknown, with reports limited to technical properties.
  
  
  METHODS
  We conducted a mixed-methods study to evaluate clinical impact of a validated mortality risk score aimed at informing prognosis and supporting clinicians in decision-making in dementia patients with pneumonia. We performed a trial (n = 69) with physician-reported outcomes referring to the score's aims. Subsequently, physician focus group discussions were planned to better understand barriers to clinical impact, and we surveyed families (n = 50) and nurses practicing in nursing homes (n = 29). We finally consulted with experts and key persons for implementation.
  
  
  RESULTS
  Most (71%) physicians who used the score considered it useful, but mainly for its learning effects. Families were never informed of numerical risk estimates. Two focus group discussions revealed a reluctance to use a numerical approach, and physicians found that outcomes conditional on antibiotic treatment were inadequate to support decision-making. Nurses varied in their perceived role in informing families. Most families (88%) wished to be informed, preferring a numerical (43%), verbalized (35%), or other approach (18%) or had no preference (5%). Revising the score, we added an ethical framework for decision-making to acknowledge its complexity, an explanatory note addressing barriers related to physicians' attitudes, and a nurses' form.
  
  
  CONCLUSIONS
  The combined quantitative and qualitative studies elicited: substantial barriers to a numerical approach to physicians' end-of-life decision-making; crucial information for revisions and further score development; and a need for implementation strategies that focus on education.
authors.affiliation: VU University Medical Center, EMGO Institute for Health and Care Research, Department of Nursing Home Medicine, Amsterdam, The Netherlands. j.vandersteen@vumc.nl
authors.forename: Jenny T
authors.initials: JT
authors.lastname: van der Steen
authors.forename: Gwenda
authors.initials: G
authors.lastname: Albers
authors.forename: Els
authors.initials: E
authors.lastname: Licht-Strunk
authors.forename: Martien T
authors.initials: MT
authors.lastname: Muller
authors.forename: Miel W
authors.initials: MW
authors.lastname: Ribbe
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000900:Anti-Bacterial Agents / Q000627:therapeutic use; D003657:Decision Making; D003704:Dementia / Q000150:complications / Q000401:mortality*; D005260:Female; D006707:Homes for the Aged; D006801:Humans; D008297:Male; D008875:Middle Aged; D009726:Nurses; D009735:Nursing Homes; D010820:Physicians; D011014:Pneumonia / Q000150:complications / Q000188:drug therapy / Q000401:mortality*; D011379:Prognosis; D018570:Risk Assessment; D012720:Severity of Illness Index; D013727:Terminal Care
chemical_list: D000900:Anti-Bacterial Agents