National Centre for Immunisation Research and Surveillance (NCIRS), Kids Research Institute, The Children's Hospital at Westmead, Cnr Hawkesbury Road and Hainsworth Street, Locked Bag 4001, Sydney, NSW, 2145, Australia,
Qual Life Res. 2014 Apr;23(3):939-51. doi: 10.1007/s11136-013-0538-y. Epub 2013 Oct 1.
Influenza-like illnesses (ILI) cause paediatric morbidity and affect the quality of life (QoL) of children and their parents. We have developed a disease-specific questionnaire (Care-ILI-QoL) to measure the QoL of caregivers of children with ILI.
The drafting of the Care-ILI-QoL questionnaire was based on a systematic review, a quantitative survey, qualitative interviews with parents, and meetings with paediatricians. Children aged 6-48 months recruited from childcare centres in Sydney, Australia, were followed up during the 2011 influenza season. Care-ILI-QoL and SF-12v2 Acute Form were administered to the parent of a sick child 2 weeks after the onset of ILI, and again 2 weeks after the child had recovered. Exploratory factor analysis was conducted. Internal consistency, concurrent validity, discriminant validity, homogeneity of items, and responsiveness were tested.
Out of the 125 children enrolled from 48 childcare centres, 55 children had ILI (total 75 ILI episodes). Care-ILI-QoL was reduced from 25 to 16 items covering four factors: Daily Activities, Perceived Support, Social Life, and Emotions (Cronbach's alphas 0.90, 0.92, 0.78, and 0.72, respectively). Care-ILI-QoL has satisfactory concurrent and discriminant validity, good internal consistency, and excellent responsiveness. Total QoL and factor scores correlated well with SF-12v2 scores. Total QoL scores were significantly lower in parents who perceived their child as very/extremely sick, sacrificed 10 hours or more in work or recreation in caring for the child, or whose child had two or more general practitioner visits. Total QoL and factor scores were significantly higher after the child had recovered than when the child had ILI.
Care-ILI-QoL is the first ILI-specific QoL instrument for parents and is demonstrated to be valid and reliable in a developed country setting where the child is affected by ILI. It has the potential to be applied in clinical and research settings to assist measurement of disease burden, as a needs assessment tool for resources or to inform policy changes.
流感样疾病（ILI）会导致儿科发病率，并影响儿童及其父母的生活质量（QoL）。我们已经开发了一种特定于疾病的问卷（Care-ILI-QoL）来衡量患有 ILI 的儿童的照顾者的 QoL。
Care-ILI-QoL 问卷的起草基于系统评价、定量调查、与父母的定性访谈以及与儿科医生的会议。2011 年流感季节，从澳大利亚悉尼的儿童保育中心招募了 6-48 个月大的儿童进行随访。在 ILI 发病后 2 周和儿童康复后 2 周，为生病儿童的父母分别进行了 Care-ILI-QoL 和 SF-12v2 急性形式的测试。进行了探索性因子分析。测试了内部一致性、同时有效性、判别有效性、项目同质性和响应性。
从 48 家儿童保育中心招募的 125 名儿童中，有 55 名儿童患有 ILI（总共有 75 个 ILI 发作）。Care-ILI-QoL 从 25 项减少到 16 项，涵盖四个因素：日常活动、感知支持、社会生活和情绪（Cronbach's alpha 值分别为 0.90、0.92、0.78 和 0.72）。Care-ILI-QoL 具有令人满意的同时有效性和判别有效性、良好的内部一致性和出色的响应性。总 QoL 和因子评分与 SF-12v2 评分高度相关。总 QoL 评分在父母认为孩子非常/极其生病、照顾孩子牺牲 10 小时或更多工作或娱乐时间或孩子看了两次或更多次全科医生的情况下显著降低。在孩子康复后，总 QoL 和因子评分均明显高于孩子患病时。
Care-ILI-QoL 是第一个针对父母的特定于 ILI 的 QoL 工具，在受 ILI 影响的儿童的发达国家环境中被证明是有效和可靠的。它有可能在临床和研究环境中应用，以帮助衡量疾病负担，作为资源需求评估工具或为政策变化提供信息。
