The use of patient-reported outcomes becomes standard practice in the routine clinical care of lung–heart transplant patients

Abstract

Maria J Santana1, David Feeny2, Justin Weinkauf1, Roland Nador1, Ali Kapasi1, Kathleen Jackson1, Marianne Schafenacker1, Dalyce Zuk1, Dale Lien11Lung Transplant Program, University of Alberta Hospital, Edmonton, Alberta, Canada; 2The Center for Health Research, Kaiser Permanente Northwest, Portland, OR, USAObjective: To assess the use of patient-reported outcome (PROs) measures in the routine clinical care of lung–heart transplant patients. We assessed whether the addition of PROs in routine clinical care affected the duration of the consultation and patient’s and clinician’s views.Method: Consecutive lung–heart transplant patients visiting the outpatient clinic, University of Alberta Hospital, completed the Chronic Respiratory Questionnaire (CRQ) and the Health Utilities Index (HUI) on touchscreen computers. Information on the patient’s responses was made available to the members of the transplant team prior to the encounter with the patient. The duration of clinical encounters was noted. At the end of every visit, clinicians completed a questionnaire on the usefulness of having PRO information available. After 6 months patients completed a survey of their experiences.Results: The final patient sample consisted of 172 patients with a mean (SD) age of 52 (13.3) years old; 47% were female; 68% were organ recipients and 32% candidates. The transplant team, comprising four pulmunologists, two nurses, and one pharmacist had an average of 9 years of practical experience in pulmunology. The mean duration of patient–clinician encounters in minutes was 15.15 (4.52). Ninety-eight percent of patients indicated that they would be happy to complete the CRQ and HUI at every clinic visit. Ninety-one percent of the assessments completed by clinicians showed complete satisfaction with the use of PROs in routine practice. Further, the clinicians developed guidelines for the use of PRO information in clinical practice.Conclusions: The incorporation of PRO measures in the routine clinical care of lung–heart transplant patients resulted in a reduction of the duration of patient–clinician encounters. The experience was well accepted by patients and clinicians. We conclude that the routine use of PROs in lung–heart transplant patients has become standard practice.Keywords: patient-reported outcome measures, Chronic Respiratory Questionnaire, Health Utilities Index, routine clinical care, lung transplant