Center for Innovation in Pediatric Practice, The Research Institute at Nationwide Children's Hospital, Columbus, Ohio; Department of Health Services Management and Policy, College of Public Health, Ohio State University, Columbus, Ohio.
Center for Innovation in Pediatric Practice, The Research Institute at Nationwide Children's Hospital, Columbus, Ohio.
Acad Pediatr. 2018 Aug;18(6):662-668. doi: 10.1016/j.acap.2018.02.007. Epub 2018 Mar 15.
Caring for teens with special health care needs places physical and mental health burdens on parents, which can be exacerbated by the stresses of transitions to independence. Medical homes can improve teen transitions to greater self-management and reduce health care-related time and financial burdens for families. We examined the association between parent-reported teen medical home status and caregiver health-related quality of life (HRQOL).
The study sample included parents or caregivers of teens with special health care needs aged 15 to 18 recruited from a pediatric Medicaid accountable care organization who participated in a survey (response rate, 40.5%). The primary outcome was parent HRQOL scores (0-100 points) measured using the Pediatric Quality of Life Inventory Family Impact Module. Medical home status was based on parent report of teen's health care meeting medical home criteria. Linear regression models were used to estimate HRQOL scores, adjusted for demographic characteristics, health literacy, and teen functional limitation.
Among 488 parents, 27% reported their teen received care consistent with a medical home. Adjusted parent HRQOL scores were significantly higher among those whose teens had a medical home (74.40; 95% confidence interval, 71.31-77.48), relative to those whose teens did not (65.78; 95% confidence interval, 63.92-67.65). Medical home subscale analyses showed HRQOL scores had significant positive associations with family-centered care and coordinated care, but not other subscales.
Teen medical home status was positively associated with caregiver HRQOL, suggesting that the medical home may benefit overall caregiver well-being. In particular, receiving care that was family centered and coordinated appeared to be the most beneficial.
照顾有特殊医疗需求的青少年会给父母带来身体和精神上的负担，而向独立过渡的压力会使这种负担加剧。医疗之家可以改善青少年向更大程度的自我管理过渡，并减轻家庭的医疗保健相关时间和经济负担。我们研究了家长报告的青少年医疗之家状况与照顾者健康相关生活质量（HRQOL）之间的关联。
研究样本包括从儿科医疗补助管理式医疗组织招募的 15 至 18 岁有特殊医疗需求的青少年的父母或照顾者，他们参加了一项调查（应答率为 40.5%）。主要结果是使用儿科生活质量清单家庭影响模块测量的父母 HRQOL 评分（0-100 分）。医疗之家的状况是根据父母对青少年的医疗保健符合医疗之家标准的报告。使用线性回归模型估计 HRQOL 评分，调整了人口统计学特征、健康素养和青少年功能限制。
在 488 位父母中，有 27%的人报告他们的青少年接受的医疗符合医疗之家的标准。与没有医疗之家的青少年（65.78；95%置信区间，63.92-67.65）相比，其青少年有医疗之家的父母的调整后父母 HRQOL 评分明显更高（74.40；95%置信区间，71.31-77.48）。医疗之家子量表分析显示，HRQOL 评分与以家庭为中心的护理和协调护理呈显著正相关，但与其他子量表无关。
青少年医疗之家的状况与照顾者的 HRQOL 呈正相关，这表明医疗之家可能有益于整体照顾者的幸福感。特别是，接受以家庭为中心和协调的护理似乎最有益。
