title: Attribute Development Using Continuous Stakeholder Engagement to Prioritize Treatment Decisions: A Framework for Patient-Centered Research.
abstract: OBJECTIVE
  To develop a methodological approach for selecting, validating, and prioritizing attributes for health care decision making.
  
  
  METHODS
  Participants (n = 48) were recruited from community support groups if they had a child aged 26 years or younger diagnosed with a coexisting mental health condition and cognitive impairment. Six in-depth interviews eliciting care management experiences were transcribed and coded into themes following the principles of grounded theory and the constant comparative method. Six focus groups involving 42 participants assessed the relevance, priority, and meaning and inter-relationship among the themes. The positive predictive value and sensitivity assessed agreement on thematic meaning. A final list was selected from the top priorities with good agreement as candidate attributes. Attribute levels reflecting the range of experiences in care management decisions emerged from the verbatim passages within each coded theme.
  
  
  RESULTS
  Participants were the child's mother (73%), white (77%), married (69%), and on average 48 years old. The children were on average 14 years old; 44% had an intellectual disability, 25% had autism, and more than half had anxiety or attention-deficit/hyperactivity disorder. All 14 attributes identified from the in-depth interviews were deemed relevant. The positive predictive value exceeded 90%, and the sensitivity ranged from 64% to 89%. The final set of attributes formed the framework for care management decisions consisting of six attributes (medication, behavior, services, social, treatment effects, and school) each with three levels.
  
  
  CONCLUSIONS
  A systematic approach grounded in qualitative methods produced a framework of relevant, important, and actionable attributes representing competing alternatives in clinical decisions.
authors.affiliation: Department of Pharmaceutical Health Services Research, University of Maryland School of Pharmacy, Baltimore, MD, USA. Electronic address: sdosreis@rx.umaryland.edu.
authors.forename: Susan
authors.initials: S
authors.lastname: dosReis
authors.affiliation: Department of Pharmaceutical Health Services Research, University of Maryland School of Pharmacy, Baltimore, MD, USA.
authors.forename: Wendy Camelo
authors.initials: WC
authors.lastname: Castillo
authors.affiliation: Department of Pharmaceutical Health Services Research, University of Maryland School of Pharmacy, Baltimore, MD, USA.
authors.forename: Melissa
authors.initials: M
authors.lastname: Ross
authors.affiliation: PatientsLikeMe, Cambridge, MA, USA.
authors.forename: Marcy
authors.initials: M
authors.lastname: Fitz-Randolph
authors.affiliation: University of Maryland PIONEER Study Community Partners, Baltimore, MD, USA.
authors.forename: Angela
authors.initials: A
authors.lastname: Vaughn-Lee
authors.affiliation: University of Maryland PIONEER Study Community Partners, Baltimore, MD, USA.
authors.forename: Beverly
authors.initials: B
authors.lastname: Butler
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002665:Child Psychiatry; D003657:Decision Making; D005260:Female; D017144:Focus Groups; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008396:Maryland; D001523:Mental Disorders / Q000628:therapy*; D008875:Middle Aged; D010346:Patient Care Management; D036301:Qualitative Research; D055815:Young Adult
keywords: attribute development; health care decision making; qualitative methods; stated preferences