Assessing Shared Decision-Making in Cystic Fibrosis Care Using collaboRATE: A Cross-Sectional Study of 159 Programs

Abstract

There are numerous opportunities for shared decision-making (SDM) in cystic fibrosis (CF) care, yet little is known about patients’ SDM experiences. This study evaluated SDM across 159 CF care programs (4024 participants) in the United States. Shared decision-making was assessed using the patient-reported collaboRATE measure, which was included in the CF Foundation’s Patient and Family Experience of Care Survey over 18 months. Overall, 69% of respondents reported experiencing SDM. Respondents at pediatric programs were more likely to experience SDM than those at adult programs (72% vs 67%, P < .001). Multivariable logistic regression analyses showed a relationship between SDM and patient age, whereby SDM was less likely to occur with patients aged 18 to 24 years, compared to some younger and older age groups ( P = .02-<.001). Shared decision-making was more likely to occur at pediatric programs when patients had better general health ( P = .02-<.01), and at pediatric and adult programs when patients had better mental health ( P = .02-<.001). Disparities in SDM experiences highlight a need to improve decision-making processes in CF care. Interventions tailored for improving SDM among specific patient populations may be particularly advantageous.

Telehealth and CFTR modulators: Accelerating innovative models of cystic fibrosis care

“…Routine surveillance typically consisted of quarterly in-person clinic visits in which the core care team members met with PwCF and their family, as appropriate. This approach has been conducive to long-term, mutually beneficial relationships between team members and patients/families, which provided a foundation for treatment decisions [13] . This center-based, in-person care model has been a resounding success as survival and other key clinical metrics have steadily improved over recent decades.…”

A year in review: Real world evidence, functional monitoring and emerging therapeutics in 2021

“…We need to continue to listen to what is important to PwCF and engage them in shared decision making, including balancing their treatment burden. Given the pace of change, it is vitally important we work together to consider innovative approaches to clinical trial designs to ensure we can continue to optimize CF care in future [116] , [117] , [118] .…”

Co-created Decision Making: From Co-production to Value Co-creation in Health Care

“…The co-production between physicians and patients is initiated in meetings in clinics and offices, focusing on the respect for the patient's autonomy, promoting the patient's engagement, encouraging them to think about the treatment options and the probable benefits and harms of each option [20,22,23]. Thus, a logic dominated by service, with the co-creation of values between physicians and patients, emerges as a way to go beyond patient-centered care, which some believed to be the apex of the SDM, but there is "a long journey ahead; there's more work to be done" [20, p.7].…”

“…SDM has become a widely used term in health communication [20]. It and can be defined as a formal process or tool that helps physicians and patients work together to make decisions about diagnosis, treatment, or follow-up that best reflect the medical evidence and the patient's individual priorities and goals for his care [20,22,23,24]. Although the discussion about the importance of physician and patient sharing the medical decision making has been addressed for some decades, clinical acceptance of the concept is more recent and, currently, stakeholders such as patient representatives, policymakers, hospitals and health insurance companies around the world advocate the principles of SDM as the ideal for decision making [24].…”

“…Many models of SDM in health care focus on the relationship between the patient and the physician [20,25], because of the importance of this primary relationship between them. However, advances in this patient-doctor relationship are already found in the literature on this topic with the sharing of other stakeholders, such as family members and interprofessional and interdisciplinary groups [21,23,37].…”