Anne C Wheeler1, Amanda Wylie2, Adrienne Villagomez3, Ellen Bishop2, Melissa Raspa2. 1. RTI International 3040 E. Cornwallis Road, P.O. Box 12194, Research Triangle Park, NC, 27709, USA. Electronic address: acwheeler@rti.org. 2. RTI International 3040 E. Cornwallis Road, P.O. Box 12194, Research Triangle Park, NC, 27709, USA. 3. Children's Hospital Colorado, Anschutz Medical Campus, 13123 East 16th Avenue, Aurora, CO, 80045, USA.
Abstract
BACKGROUND: Previous research suggests that individuals with intellectual or developmental disabilities (IDD) may experience challenges accessing quality health care. OBJECTIVE/HYPOTHESIS: This study explored parent perceptions of access and quality of health care services for children with fragile X syndrome (FXS), the leading hereditary cause of intellectual/developmental disabilities. METHODS: Nearly 600 primary caregivers of at least one child with FXS completed an online survey on access, barriers, and quality of health care for their family member with FXS (N = 731). RESULTS: In a convenience sample of well-educated and affluent caregivers, the majority did not report experiencing difficulties with access to services. Caregivers of younger children and those with lower family incomes reported greater challenges with health care access. Nearly 40% of caregivers indicated that their child's PCP was not as knowledgeable about FXS-related needs as they would prefer, indicating a possible knowledge gap on the part of providers. CONCLUSIONS: These factors represent potential barriers to quality health care for individuals with FXS, with potential lifelong effects ranging from delayed age of diagnosis to difficulty accessing a PCP in adulthood.
BACKGROUND: Previous research suggests that individuals with intellectual or developmental disabilities (IDD) may experience challenges accessing quality health care. OBJECTIVE/HYPOTHESIS: This study explored parent perceptions of access and quality of health care services for children with fragile X syndrome (FXS), the leading hereditary cause of intellectual/developmental disabilities. METHODS: Nearly 600 primary caregivers of at least one child with FXS completed an online survey on access, barriers, and quality of health care for their family member with FXS (N = 731). RESULTS: In a convenience sample of well-educated and affluent caregivers, the majority did not report experiencing difficulties with access to services. Caregivers of younger children and those with lower family incomes reported greater challenges with health care access. Nearly 40% of caregivers indicated that their child's PCP was not as knowledgeable about FXS-related needs as they would prefer, indicating a possible knowledge gap on the part of providers. CONCLUSIONS: These factors represent potential barriers to quality health care for individuals with FXS, with potential lifelong effects ranging from delayed age of diagnosis to difficulty accessing a PCP in adulthood.
Authors: Laura Wagner; MaryKate Frisch; Lauren Turner-Brown; Sara Andrews; Anne Edwards; Rebecca Moultrie; Alexandra Alvarez Rivas; Anne Wheeler; Melissa Raspa Journal: Disabil Health J Date: 2020-04-08 Impact factor: 2.554
Authors: M C Van Remmerden; L Hoogland; S E Mous; B Dierckx; M Coesmans; H A Moll; K Lubbers; C R Lincken; A M Van Eeghen Journal: J Autism Dev Disord Date: 2020-06
Authors: Michael J Hurley; Robert M J Deacon; A W Edith Chan; David Baker; David L Selwood; Patricia Cogram Journal: Brain Date: 2022-03-29 Impact factor: 15.255