Development of a PREM for acute leukemia and/or stem cell transplantation.

Abstract

195 Background: People with complex hematologic malignancies (eg. acute leukemia) require highly specialized care from the time of initial diagnosis, throughout treatment and into survivorship. Often, stem cell transplantation is an essential component of treatment for some people with complex hematologic malignancies. A challenge with generic patient-reported experience measure (PREM) tools is that they do not capture areas of concern for a specific population, which was the case for people with complex hematologic malignancies. Therefore, a disease-specific PREM was developed to address relevant aspects of the patient experience. Methods: The development consisted of:1)literature review to identify relevant patient experience items;2)modified Delphi process where patient experience items were rated by experts (n = 10); 3)cognitive interviews (n = 8) to ensure that items were clear and understandable; and 4)pilot of survey. Results: Through the review of literature, two existing PREMs were identified as relevant for this patient population and potential items were extracted:1)the Ambulatory Oncology Patient Satisfaction Survey (n = 90); and2)the Canadian Patient Experience Survey – Inpatient Care (n = 44).The modified Delphi processes consisted of three rounds (an online survey and two in-person meetings to discuss results), which resulted in 73 items being eliminated and 29 items being added.A 90-item PREM was utilized for the cognitive interviews with patients and/or family members, where 14 items were removed and 6 items were added. Conclusions: The PREM was named Your Voice Matters-Acute Leukemia and Stem Cell Transplant, and includes 82 items for measuring the patient experience of complex hematologic malignancies.Surveys were distributed via mail to eligible patients from 10 Regional Cancer Centres in Ontario, Canada in May 2018.Results are anticipated for August 2018.