Educational Needs and Preferences for Patient-Centered Outcomes Research in the Cystic Fibrosis Community: Mixed Methods Study (Preprint)

Abstract

BACKGROUND Cystic fibrosis (CF) is a rare, life-shortening, multi-organ disease that has seen significant increases in life expectancy. Many advances in CF care are due to the active participation of people with CF as research subjects. Yet, most CF research teams do not yet fully partner with people with CF or their caregivers on the research team. OBJECTIVE To determine the interest, knowledge gaps, and desired format for patient-centered outcomes research (PCOR) training in the CF community. METHODS We surveyed patients, caregivers, researchers, research staff and diverse healthcare providers via listservs and social media outreach about their knowledge of, experience with, and preferences for PCOR training components. We followed the survey with three small-group World Café discussion sessions with 22 participants who completed the survey to establish consensus and prioritize key learning components of a PCOR training program. We summarized results using descriptive statistics and thematic analysis. RESULTS A total of 170 participants completed the survey (56% patients/caregivers; 44% researchers/healthcare providers). Among providers, 19% were physicians/advanced practice providers, 20% nurses, 30% social workers, and 24% were from other disciplines. Among all participants, 86% expressed interest in learning about PCOR, although training topics and training format differed between the patient/caregiver and researcher/healthcare provider groups. Before participating in PCOR, patients/caregivers wanted to understand more about expectations of them as partners on PCOR research teams (85%). Researchers/healthcare providers desired information on how to include outcomes important to patients/caregivers (74%) and the quality and impact of PCOR research (70%, 69%, respectively). Patients/caregivers were most interested in learning about the time commitment as a PCOR team member (78%). Researchers/healthcare providers wanted to receive training about how to establish trust (64%) and maintain confidentiality (64%) when patient or caregiver partners are on the PCOR team. During World Café discussions, participants emphasized the importance of addressing the patient/caregiver and research/healthcare provider hierarchy by teaching about transparency, appreciation, creating a common language between the groups, and providing specific training on “how” to do PCOR. CONCLUSIONS Our findings suggest CF community members are interested in PCOR. A high-quality training program would fill a current methodological research gap. This assessment identified the topics and formats desired and can be used to develop targeted training to enhance meaningful PCOR in CF.