Exploring the Potential for Technology to Improve Cystic Fibrosis Care Provision

Abstract

Health care systems increasingly promote self-management of chronic conditions outside of traditional clinical environments, often through technologies which help to support patient self-care and engagement with medical professionals. We investigate specialist care provision in cystic fibrosis (CF), a life-shortening genetic condition, to understand the experiences of those living with it and of professionals who provide such care. Our work highlights how the motivations for the use of technology in this context are often intrinsically linked to the nature of CF itself and the constraints that the condition imposes on care provision. These include the high burden associated with self-management and clinic attendance; the ever-present risk of infection and a subsequent decline in health; and patients who are often very well-informed and actively engaged in their care. In exploring enablers and barriers to technology in this context, we highlight the importance of considering its integration into the chronic care cycles, practices, and structures of CF care.

<p>Emerging Alternatives to Conventional Clinic Visits in the Era of COVID-19: Adoption of Telehealth at VCU Adult Cystic Fibrosis Center</p>

“…15 Still, telehealth has been investigated in the context of CF care as a way to enhance convenience, decrease cost, fill gaps in access due to geography, and increase the frequency of monitoring to improve patient satisfaction and outcomes. 16,17 The few studies investigating patient experience with telehealth have demonstrated high satisfaction and good uptake, indicating this to be a feasible option for patients. 18,19 A recent review determined telehealth services generally to be equivalent to in-person care in most disciplines, 20 and although there is a need for more longitudinal comparative studies, specialty teleconsultation services have demonstrated equivalence to face-toface patient care during the COVID-19 pandemic.…”