Fraser Lorna Katharine, Murtagh Fliss E M, Sheldon Trevor, Gilbody Simon, Hewitt Catherine
Health Sciences, University of York, York, North Yorkshire, UK
Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK.
BMJ Open. 2020 Jul 13;10(7):e034024. doi: 10.1136/bmjopen-2019-034024.
There are now nearly 50 000 children with a life-limiting or life-threatening condition in the UK. These include conditions where there is no reasonable hope of cure and from which they will die, as well as conditions for which curative treatment may be feasible but can fail, for example, cancer or heart failure. Having a child with a life-limiting condition involves being a coordinator and provider of healthcare in addition to the responsibilities and pressures of parenting a child who is expected to die young. This adversely affects the health and well-being of these mothers and affects their ability to care for their child, but the extent of the impact is poorly understood.This study aims to quantify the incidence and nature of mental and physical morbidity in mothers of children with a life-limiting condition, their healthcare use and to assess whether there is a relationship between the health of the mother and the child's condition.
A comparative cohort study using data from the Clinical Practice Research Datalink and linked hospital data will include three groups of children and their mothers (those with a life-limiting condition, those with a chronic condition and those with no long-term health condition total=20 000 mother-child dyads). Incidence rates and incidence rate ratios will be used to quantify and compare the outcomes between groups with multivariable regression modelling used to assess the relationship between the child's disease trajectory and mother's health.
This study protocol has approval from the Independent Scientific Advisory Committee for the UK Medicines and Healthcare products Regulatory Agency Database Research. The results of this study will be reported according to the STROBE and RECORD guidelines. There will also be a lay summary for parents which will be available to download from the Martin House Research Centre website (www.york.ac.uk/mhrc).
在英国，目前有近5万名儿童患有危及生命或生命受限的疾病。这些疾病包括无法治愈且必死无疑的情况，以及治愈性治疗可能可行但可能失败的疾病，例如癌症或心力衰竭。孩子患有危及生命的疾病，这意味着母亲除了要承担养育早夭孩子的责任和压力外，还要成为医疗保健的协调者和提供者。这对这些母亲的健康和幸福产生了不利影响，也影响了她们照顾孩子的能力，但这种影响的程度却鲜为人知。本研究旨在量化患有危及生命疾病的儿童母亲的心理和身体发病率及性质、她们的医疗保健使用情况，并评估母亲的健康状况与孩子病情之间是否存在关联。
一项比较队列研究将使用临床实践研究数据链和相关医院数据，研究对象包括三组儿童及其母亲（患有危及生命疾病的儿童及其母亲、患有慢性病的儿童及其母亲、无长期健康问题的儿童及其母亲，总计20000对母婴）。发病率和发病率比将用于量化和比较各组之间的结果，多变量回归模型将用于评估孩子的疾病轨迹与母亲健康之间的关系。
本研究方案已获得英国药品和医疗产品监管局数据库研究独立科学咨询委员会的批准。本研究结果将按照STROBE和RECORD指南进行报告。还将为家长提供一份通俗易懂的总结，可从马丁之家研究中心网站（www.york.ac.uk/mhrc）下载。
