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

Abstract

Background Cystic fibrosis (CF) is a rare, life-shortening, multiorgan disease, the treatment of which has seen significant increases in the life expectancy of those with CF. Many advances in CF care are thanks to the dedicated and active participation of people with CF as research participants. Unfortunately, most CF research teams still do not fully partner with people with CF or their caregivers. Objective The aim of this study was 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 health care providers via list servers and social media outreach about their knowledge of, experience with, and preferences for PCOR training components. We followed the survey with 3 small-group 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. Results A total of 170 participants completed the survey (patients/caregivers: 96/170, 56.5%; researchers/health care providers: 74/170, 43.5%). Among providers, 26% (19/74) were physicians/advanced practice providers, 20% (15/74) were nurses, and 54% (40/74) were from other disciplines. Among all participants, 86.5% (147/170) expressed interest in learning about PCOR, although training topics and training format differed between the patient/caregiver and researcher/health care provider groups. Before participating in PCOR, patients/caregivers wanted to understand more about expectations of them as partners on PCOR research teams (82/96, 85%). Meanwhile, researchers/health care providers desired information on how to include outcomes important to patients/caregivers (55/74, 74%) and the quality and impact of PCOR research (52/74, 70% and 51/74, 69%, respectively). Patients/caregivers were most interested in learning about the time commitment as a PCOR team member (75/96, 78%). Researchers/health care providers wanted to receive training about how to establish trust (47/74, 64%) and maintain confidentiality (47/74, 64%) when including patient or caregiver partners on the PCOR team. During follow-up discussions, participants emphasized the importance of addressing the traditional patient/caregiver and researchers/health care 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 deficit in methodological research. This assessment identified the topics and formats desired and can be used to develop targeted training to enhance meaningful PCOR in CF.

Development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community

“…In this study, our team, consisting of researchers, clinicians, PwCF and CF advocates, developed and evaluated four unique virtual training sessions related to patient/caregiver engagement on CF research teams. Based on the results of our prior educational needs assessment [ 14 ], we worked with an educational specialist to identify competencies and used an iterative process to specify our learning objectives based on the Model of Improvement [ 16 ]. We customized existing PCOR materials to meet the needs of the CF community, which called for incorporation of key adult learning principles, including pre-training materials, learning aids, and multi-modal learning strategies (e.g., didactics, small group activities, discussions, and question/answer sessions).…”

“…Our focus for this present study were phases (2) and (3). Phase 1 (Plan) included a needs assessment co-produced and conducted by our team, which has been published previously [ 14 ].

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“…2 , which were guided by best practices for training and development provided by the University of Washington Institute of Translational Health Sciences [ 17 ]. Our initial steps included developing four core competencies and learning objectives for each competency, informed by findings from a prior CF community educational needs assessment [ 14 ]. Over the course of several weeks, the team co-created four separate core competencies for two distinct learner groups: (1) researchers/providers and (2) patients/caregivers.…”

“…The patient-partner with CF advocacy organizations connections sought pre-existing training programs already available for the CF community. At each weekly meeting, the public health researcher and patient-partners would present power-point slides or material they found on the internet, and the remaining team members adapted these to meet items specifically mentioned during our needs assessment [ 14 ]. The public health researcher and two patient-partners additionally identified information from the peer-reviewed literature on PCOR, which supplemented aspects of the CF-specific training program that had not been identified in pre-existing PCOR training [ 21 – 29 ].…”

“…This made patients want to keep their discussions confidential. Thus, based on our prior needs assessment, we found the most important training areas to address for both the patient/caregiver and provider/researcher groups included: (1) knowing the time commitment required to learn PCOR methodology, and (2) learning how to develop and maintain trust when patients/caregivers are active members of the research team [ 14 ]. PCOR training is necessary to achieve a critical mass of researchers employing this methodology.…”