title: Understanding optimal approaches to patient and caregiver engagement in the development of cancer practice guidelines: a mixed methods study.
abstract: Practice guidelines (PGs) can assist health care practitioners and patients to make decisions about health care options. A key component of high quality PGs is the consideration of patient values and preferences. A mixed methods study was conducted to understand optimal approaches to patient engagement in the development of cancer PGs.
  
  
  
  Cancer patients, survivors, family members and caregivers were recruited from cancer clinics, follow-up clinics, community support programs, a provincial patient and family advisory committee, and a provincial cancer PG development program. Participants attended a workshop, completed a survey, or participated in a telephone interview, to provide information about PG awareness, attitudes, information needs, training, engagement approaches and barriers and facilitators.
  
  
  
  Forty-one participants (12 workshop attendees, 21 survey respondents and 8 interviewees) provided data. For those with no PG development experience, fewer than half were previously aware of PGs but perceived several benefits to the inclusion of this perspective. Common barriers to participation across the groups were time commitment, duration of the PG development process, and financial costs. Positive beliefs about the contributions that could be made and practical considerations (e.g., orientation and training, defined roles and expectations) were identified as key features in the successful integration of patients into the PG development process. There was no single model of engagement favored over another.
  
  
  
  Study results align with similar studies in other contexts and with international patient engagement efforts. Findings are being used to test new patient engagement models in a programmatic PG development initiative in Ontario, Canada.
authors.affiliation: Department of Oncology, McMaster University, Juravinski Campus, G Wing, 2nd Floor, 1280 Main Street West, Hamilton, Ontario, L8S 4L8, Canada. mbrouwer@mcmaster.ca.|Escarpment Cancer Research Institute, Hamilton, Ontario, Canada. mbrouwer@mcmaster.ca.
authors.forename: Melissa C
authors.initials: MC
authors.lastname: Brouwers
authors.affiliation: Department of Oncology, McMaster University, Juravinski Campus, G Wing, 2nd Floor, 1280 Main Street West, Hamilton, Ontario, L8S 4L8, Canada.|Escarpment Cancer Research Institute, Hamilton, Ontario, Canada.
authors.forename: Marija
authors.initials: M
authors.lastname: Vukmirovic
authors.affiliation: Department of Oncology, McMaster University, Juravinski Campus, G Wing, 2nd Floor, 1280 Main Street West, Hamilton, Ontario, L8S 4L8, Canada.|Escarpment Cancer Research Institute, Hamilton, Ontario, Canada.
authors.forename: Karen
authors.initials: K
authors.lastname: Spithoff
authors.affiliation: Formerly from the Department of Oncology, McMaster University, Hamilton, Ontario, Canada.
authors.forename: Julie
authors.initials: J
authors.lastname: Makarski
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology; D003695:Delivery of Health Care / Q000458:organization & administration; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology / Q000628:therapy*; D009864:Ontario; D010358:Patient Participation; D010465:Perception; D017410:Practice Guidelines as Topic; D016730:Program Development; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology; D055815:Young Adult
keywords: Cancer; Clinical practice guidelines; Consumer engagement; Mixed methods; Patient engagement