一项全国性调查中的儿科慢性疼痛与照料者负担
Pediatric chronic pain and caregiver burden in a national survey.
作者信息
Datz Hannah, Tumin Dmitry, Miller Rebecca, Smith Timothy P, Bhalla Tarun, Tobias Joseph D
机构信息
Marshall University Joan C. Edwards School of Medicine, Huntington, WV, USA.
Nationwide Children's Hospital, 700 Children's Drive, Columbus, OH 43205, USA.
出版信息
Scand J Pain. 2019 Jan 28;19(1):109-116. doi: 10.1515/sjpain-2018-0121.
Background and aims Caring for children with chronic pain incurs burdens of cost and time for families. We aimed to describe variation in caregiver burden among parents of adolescents with chronic pain who responded to a nationally-representative survey. Our secondary aim was to identify child and parent characteristics associated with increased caregiver burden. Methods We used de-identified, publicly-available data from the 2016 National Survey of Children's Health (NSCH), designed to be representative of non-institutionalized children in the United States. We analyzed data for households where an adolescent age 12-17 years old was reported by a parent to have chronic pain. Outcomes included the parent's time spent on the child's health needs, reduced labor force participation, and out-of-pocket medical costs. Results Data on 1,711 adolescents were analyzed. For adolescents with chronic pain, 15% of parents reported spending at least 1 h/week on their child's health care, 14% reported cutting back on paid work, and 36% reported spending ≥$500 on their child's health care in the past 12 months. Adolescents' general health status and extent of specialized health care needs predicted increased caregiver burden across the three measures. Conversely, no consistent differences in caregiver burden were noted according to demographic or socioeconomic characteristics. Conclusions Among adolescents with chronic pain identified on a nationally-representative survey, parents frequently reported reducing work participation and incurring out-of-pocket expenses in providing health care for their child. Caregiver burdens increased with indicators of greater medical complexity (e.g. presence of comorbidities, need for specialized health care) and poorer overall adolescent health status. Implications We add a national-level perspective to studies previously performed in clinical samples addressing caregiver burden in pediatric chronic pain. Initiatives to reduce the burden of caring for children with chronic pain, described in prior work, may be especially beneficial for families with adolescents whose chronic pain is accompanied by other health problems or requires coordination of care among multiple providers.
背景与目的 照顾患有慢性疼痛的儿童会给家庭带来成本和时间负担。我们旨在描述对一项全国代表性调查做出回应的慢性疼痛青少年父母的照顾者负担差异。我们的次要目的是确定与照顾者负担增加相关的儿童和父母特征。方法 我们使用了来自2016年全国儿童健康调查(NSCH)的去识别化的公开可用数据,该调查旨在代表美国非机构化儿童。我们分析了父母报告有12至17岁青少年患有慢性疼痛的家庭的数据。结果包括父母花在孩子健康需求上的时间、劳动力参与度降低以及自付医疗费用。结果 分析了1711名青少年的数据。对于患有慢性疼痛的青少年,15%的父母报告每周至少花1小时在孩子的医疗保健上,14%报告减少了带薪工作,36%报告在过去12个月里在孩子的医疗保健上花费≥500美元。青少年的总体健康状况和特殊医疗保健需求程度在这三项指标上都预示着照顾者负担增加。相反,根据人口统计学或社会经济特征,未发现照顾者负担有一致差异。结论 在一项全国代表性调查中确定的患有慢性疼痛的青少年中,父母经常报告在为孩子提供医疗保健时减少了工作参与并产生了自付费用。照顾者负担随着医疗复杂性更高的指标(如合并症的存在、对特殊医疗保健的需求)和青少年总体健康状况较差而增加。意义 我们为先前在临床样本中进行的关于儿科慢性疼痛照顾者负担的研究增加了国家层面的视角。先前工作中描述的减轻照顾慢性疼痛儿童负担的举措,可能对其慢性疼痛伴有其他健康问题或需要多个提供者协调护理的青少年家庭特别有益。