Department of Physiotherapy, Red Cross War Memorial Children's Hospital, Klipfontein Road, Rondebosch, Cape Town, 7700, South Africa.
Faculty of Health and Rehabilitation Sciences, Anzio Road, Observatory, Cape Town, 7925, South Africa.
Health Qual Life Outcomes. 2018 Jan 10;16(1):8. doi: 10.1186/s12955-018-0840-z.
In estimating the impact of an intervention, ignoring the effect of improving the health of one member of the caregiver/child dyad on the Health Related Quality of Life (HRQoL) of the other member may lead to an underestimation of the utility gained. This may be particularly true for infants/young children and their caregivers. The aim of this study was to quantify the interaction between the child's perceived general health as assessed by the newly developed Toddler and Infant Questionnaire (TANDI) on the reporting of the caregiver's own HRQoL as assessed by the EQ-5D-3 L.
A sample of 187 caregivers participated. A total of 60 caregivers of acutely-ill (AI) and 60 caregivers of chronically-ill (CI) children were recruited from a children's hospital. The 67 caregivers of general population (GP) children were recruited at a pre-school. Each caregiver completed the proxy rating of their child's HRQoL on the TANDI (The TANDI is an experimental HRQoL instrument, modelled on the EQ-5D-Y proxy, for children aged 1-36 months), which comprises of six dimensions of health and a rating of general health on a Visual Analogue Scale (VAS). The caregiver completed the EQ-5D-3 L, a self-report measure of their own HRQoL. Forward stepwise regression models were developed with 1) the VAS score of the caregiver and 2) the VAS score of the child as dependent variables. The independent variables for the caregiver included dummy variables for the presence or absence of problems on the EQ-5D-3 L and the VAS score of the child. The independent variables for the child included dummy variables for each TANDI dimension and the VAS of the caregiver.
The TANDI results indicated that in five of the six dimensions AI children had more problems than the other two groups and the GP children were reported to have a significantly higher VAS than the other two groups. The child's VAS was significantly correlated with the caregiver's VAS in all groups, but most strongly in the AI group. The preference based scores (using the UK TTO tariff) were only correlated in the AI group. The inclusion of the child's VAS increased the variance accounted for 11% of the VAS score of the caregiver. Anxiety and depression was the only dimension which accounted for more variance (18%). Similarly the perceived health state, VAS of the caregiver accounted for 14% of the variance in the child's VAS, second only to problems with play (25%).
There does indeed appear to be a strong relationship between the VAS scores of the children and their caregivers. The perceived general health of the child influences the caregivers reporting of their general health, more than their own report of experiencing pain or discomfort or problems with mobility. Thus, improving the HRQoL of the very young child may improve the caregiver's HRQoL as well. Conversely, if the caregiver has a lower perceived HRQoL this may result in a decrement in the reported VAS of the child, independent of the presence or absence of problems in the different dimensions. This improvement is not currently captured by Cost Utility Analysis (CUA). It is recommended that future research investigates this effect with regards to CUA calculations.
在评估干预措施的影响时，如果忽略了照顾者/儿童对另一方健康相关生活质量（HRQoL）的影响，可能会导致对所获得效用的低估。对于婴儿/幼儿及其照顾者来说，这种情况尤其如此。本研究的目的是量化儿童感知健康状况（由新开发的幼儿和婴儿问卷（TANDI）评估）对照顾者自身 HRQoL 报告（由 EQ-5D-3L 评估）的交互作用。
共有 187 名照顾者参与了研究。总共招募了 60 名急性病（AI）儿童的照顾者和 60 名慢性病（CI）儿童的照顾者，他们均来自一家儿童医院。另外招募了 67 名普通人群（GP）儿童的照顾者，他们来自一所幼儿园。每位照顾者均完成了 TANDI（TANDI 是一种针对 1-36 个月儿童的 HRQoL 代理量表，基于 EQ-5D-Y 代理量表模型开发）对其子女 HRQoL 的代理评分，其中包含六个健康维度和视觉模拟量表（VAS）上的一般健康状况评分。照顾者完成了 EQ-5D-3L，这是他们自身 HRQoL 的自我报告量表。使用正向逐步回归模型，以 1）照顾者的 VAS 评分和 2）儿童的 VAS 评分为因变量。照顾者的自变量包括 EQ-5D-3L 和儿童 VAS 评分上存在或不存在问题的虚拟变量。儿童的自变量包括 TANDI 每个维度和照顾者 VAS 的虚拟变量。
TANDI 结果表明，在六个维度中，有五个维度中 AI 儿童的问题比其他两个组更严重，而 GP 儿童的 VAS 评分明显高于其他两个组。在所有组中，儿童的 VAS 与照顾者的 VAS 显著相关，但在 AI 组中相关性最强。基于偏好的评分（使用英国 TTO 关税）仅在 AI 组中相关。儿童的 VAS 纳入后，照顾者的 VAS 评分的方差解释率增加了 11%。焦虑和抑郁是唯一能解释更多方差（18%）的维度。同样，照顾者感知的健康状况和 VAS 评分占儿童 VAS 评分方差的 14%，仅次于游戏问题（25%）。
儿童的 VAS 评分与他们的照顾者之间确实存在很强的关系。儿童的一般健康感知会影响照顾者对自身一般健康状况的报告，这比他们自己报告的疼痛或不适或活动能力问题的影响更大。因此，提高幼儿的 HRQoL 也可能会改善照顾者的 HRQoL。相反，如果照顾者的 HRQoL 较低，那么这可能会导致儿童报告的 VAS 下降，而与不同维度是否存在问题无关。目前，这一改善并没有被成本效用分析（CUA）所捕捉到。建议未来的研究用 CUA 计算来调查这种影响。
