RTI International 3040 E. Cornwallis Road, P.O. Box 12194, Research Triangle Park, NC, 27709, USA.
RTI International 3040 E. Cornwallis Road, P.O. Box 12194, Research Triangle Park, NC, 27709, USA.
Disabil Health J. 2019 Apr;12(2):269-277. doi: 10.1016/j.dhjo.2018.11.004. Epub 2018 Nov 7.
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.
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).
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.
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.
先前的研究表明，智力或发育障碍（IDD）患者可能在获得高质量医疗保健方面面临挑战。
目的/假设：本研究探讨了脆性 X 综合征（FXS）患儿家长对其医疗服务可及性和质量的看法，脆性 X 综合征是智力/发育障碍的主要遗传性病因。
近 600 名至少有一名 FXS 患儿的主要照顾者完成了一项关于其家庭成员 FXS 医疗服务可及性、障碍和质量的在线调查（N=731）。
在一个由受过良好教育和富裕的照顾者组成的便利样本中，大多数人表示他们在获得服务方面没有遇到困难。年龄较小的儿童和家庭收入较低的照顾者报告说，在获得医疗保健方面面临更大的挑战。近 40%的照顾者表示，他们孩子的初级保健医生（PCP）对 FXS 相关需求的了解不如他们希望的那样多，这表明提供者可能存在知识差距。
这些因素代表了 FXS 患者获得高质量医疗保健的潜在障碍，潜在的终身影响范围从延迟诊断年龄到成年后难以获得 PCP。
