title: Lung transplant or bust: patients' recommendations for ideal lung transplant education.
abstract: BACKGROUND
  Effective lung transplant education helps ensure informed decision making by patients and better transplant outcomes.
  
  
  OBJECTIVE
  To understand the educational needs and experiences of lung transplant patients.
  
  
  METHODS
  Mixed-method study employing focus groups and patient surveys.
  
  
  METHODS
  Barnes-Jewish Hospital in St Louis, Missouri.
  
  
  METHODS
  50 adult lung transplant patients: 23 pretransplant and 27 posttransplant.
  
  
  METHODS
  Patients' interest in receiving specific transplant information, the stage in the transplant process during which they wanted to receive the education, and the preferred format for presenting the information.
  
  
  RESULTS
  Patients most wanted information about how to sustain their transplant (72%), when to contact their coordinator immediately (56%), transplant benefits (56%), immunosuppressants (54%), and possible out-of-pocket expenses (52%). Patients also wanted comprehensive information early in the transplant process and a review of a subset of topics immediately before transplant (time between getting the call that a potential donor has been found and getting the transplant). Patients reported that they would use Internet resources (74%) and converse with transplant professionals (68%) and recipients (62%) most often.
  
  
  CONCLUSIONS
  Lung transplant patients are focused on learning how to get a transplant and ensuring its success afterwards. A comprehensive overview of the evaluation, surgery, and recovery process at evaluation onset with a review of content about medications, pain management, and transplant recovery repeated immediately before surgery is ideal.
authors.affiliation: Saint Barnabas Medical Center, Livingston, New Jersey.
authors.forename: LaShara A
authors.initials: LA
authors.lastname: Davis
authors.affiliation: Palo Alto Medical Foundation, Sutter Health, Sunnyvale, California.
authors.forename: Eric
authors.initials: E
authors.lastname: Ryszkiewicz
authors.affiliation: Washington University School of Medicine, St. Louis, Missouri.
authors.forename: Emily
authors.initials: E
authors.lastname: Schenk
authors.affiliation: David Geffen School of Medicine, University of California, Los Angeles.
authors.forename: John
authors.initials: J
authors.lastname: Peipert
authors.affiliation: Washington University School of Medicine, St. Louis, Missouri.
authors.forename: Claire
authors.initials: C
authors.lastname: LaSee
authors.affiliation: Barnes-Jewish Hospital, St. Louis, Missouri.
authors.forename: Carol
authors.initials: C
authors.lastname: Miller
authors.affiliation: Barnes-Jewish Hospital, St. Louis, Missouri.
authors.forename: Greg
authors.initials: G
authors.lastname: Richardson
authors.affiliation: Barnes-Jewish Hospital, St. Louis, Missouri.
authors.forename: Gene
authors.initials: G
authors.lastname: Ridolfi
authors.affiliation: Barnes-Jewish Hospital, St. Louis, Missouri.
authors.forename: Elbert P
authors.initials: EP
authors.lastname: Trulock
authors.affiliation: Barnes-Jewish Hospital, St. Louis, Missouri.
authors.forename: G Alexander
authors.initials: GA
authors.lastname: Patterson
authors.affiliation: David Geffen School of Medicine, University of California, Los Angeles.
authors.forename: Amy
authors.initials: A
authors.lastname: Waterman
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D017144:Focus Groups; D006801:Humans; D008171:Lung Diseases / Q000523:psychology* / Q000601:surgery*; D016040:Lung Transplantation / Q000193:education*; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010353:Patient Education as Topic / Q000458:organization & administration*; D057240:Patient Preference