Educational attainment and sex modulate clinical outcomes in genetic frontotemporal dementia.
Authors: Premi E, Archetti D, Redolfi A, Bracca V, Cantoni V, Iraji A, Calhoun VD, Bellini S, Ghidoni R, Gasparotti R, Bouzigues A, Russell LL, Foster PH, Ferry-Bolder E, van Swieten JC, Jiskoot LC, Seelaar H, Sanchez-Valle R, Laforce R, Graff C, Galimberti D, Vandenberghe R, de Mendonça A, Di Fede G, Santana I, Gerhard A, Levin J, Nacmias B, Otto M, Bertoux M, Lebouvier T, Ducharme S, Butler CR, Le Ber I, Finger E, Tartaglia MC, Masellis M, Rowe JB, Synofzik M, Moreno F, Zetterberg H, Rohrer JD, Borroni B, GENetic Frontotemporal dementia Initiative (GENFI), GENetic Frontotemporal dementia Initiative (GENFI)
Journal: Brain communications
mental health
psychology
open access
Abstract
Patients and their families or caregivers face significant physical, emotional, financial, and time-related burdens associated with accessing medical care (). In the United States, average annual out-of-pocket (OOP) health care spending reached $1,425 per person in 2022 (). People with high health care needs tend to incur the highest OOP spending: those in the top 1% of OOP spending pay an average of $23,700 out of pocket annually, and those in the top 10% pay $6,126, on average (). In addition to these direct costs, patients often encounter less visible, yet equally impactful challenges related to economic burdens of health care such as emotional distress, lifestyle disruptions, financial hardship, and missed opportunities for social and economic participation (, ). Researchers collectively refer to these challenges as patient-centered burdens and economic outcomes (PCBEOs) (). The Patient-Centered Outcomes Research Institute (PCORI) PCBEOs Landscape report describes four categories of PCBEOs (), as outlined in . These include direct medical costs (e.g., copayments, premiums, deductibles), direct non-medical costs (e.g., transportation and parking fees), indirect impacts (e.g., time spent attending appointments), and intangible burdens (e.g., anxiety about future affordability of care). Categories of patient-centered burdens and economic outcomes. Note: This figure is based on from the PCORI PCBEO landscape review ().