South London and Maudsley NHS Foundation Trust, London, UK.
Department of Child and Adolescent Psychiatry, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.
Child Adolesc Ment Health. 2021 Feb;26(1):56-64. doi: 10.1111/camh.12396. Epub 2020 Jun 16.
Patient-reported outcome measures (PROMs) are important tools to inform patients, clinicians and policy-makers about clinical need and the effectiveness of any given treatment. Consistent PROM use can promote early symptom detection, help identify unexpected treatment responses and improve therapeutic engagement. Very few studies have examined associations between patient characteristics and PROM data collection.
We used the electronic mental health records for 28,382 children and young people (aged 4-17 years) accessing Child and Adolescent Mental Health Services (CAMHS) across four South London boroughs between the 1st of January 2008 to the 1st of October 2017. We examined the completion rates of the caregiver Strengths and Difficulties Questionnaire (SDQ), a ubiquitous PROM for CAMHS at baseline and 6-month follow-up.
SDQs were present for approximately 40% (n = 11,212) of the sample at baseline, and from these, only 8% (n = 928) had a follow-up SDQ. Patterns of unequal PROM collection by sociodemographic factors were identified: males were more likely (aOR 1.07, 95% CI 1.01-1.13), whilst older age (aOR 0.87, 95% CI 0.87-0.88), Black (aOR 0.79 95% CI 0.74-0.84) and Asian ethnicity (aOR 0.75 95% CI 0.66-0.86) relative to White ethnicity, and residence within the most deprived neighbourhood (aOR 0.87 95% CI 0.80-0.94) were less likely to have a record of baseline SDQ. Similar results were found in the sub-group (n = 11,212) with follow-up SDQ collection. Our findings indicate systematic differences in the currently available PROMS data and highlights which groups require increased focus if we are to gain equitable PROM collection. We need to ensure representative PROM collection for all individuals accessing treatment, regardless of ethnic or socioeconomic background; biased data have adverse ramifications for policy and service level decision-making.
患者报告的结局测量(PROMs)是向患者、临床医生和决策者提供有关临床需求和任何特定治疗效果的重要工具。一致使用 PROM 可以促进早期症状检测,帮助识别意外的治疗反应,并改善治疗效果。很少有研究检查患者特征与 PROM 数据收集之间的关联。
我们使用了 2008 年 1 月 1 日至 2017 年 10 月 1 日期间四个伦敦南部行政区的儿童和青少年心理健康服务(CAMHS)中 28382 名 4-17 岁儿童和青少年的电子心理健康记录。我们检查了基线和 6 个月随访时 caregiver 长处和困难问卷(SDQ)的完成率,这是 CAMHS 中常用的一种 PROM。
在基线时,样本中约有 40%(n=11212)有 SDQ,其中只有 8%(n=928)有随访 SDQ。通过社会人口因素识别出 PROM 收集不平等的模式:男性更有可能(aOR 1.07,95%CI 1.01-1.13),而年龄较大(aOR 0.87,95%CI 0.87-0.88)、黑人(aOR 0.79 95%CI 0.74-0.84)和亚裔(aOR 0.75 95%CI 0.66-0.86)相对白人种族,以及居住在最贫困的社区(aOR 0.87 95%CI 0.80-0.94)的人更不可能有基线 SDQ 的记录。在有随访 SDQ 收集的亚组(n=11212)中也发现了类似的结果。我们的研究结果表明,目前可用的 PROM 数据存在系统差异,并突出了哪些群体需要更多的关注,如果我们要获得公平的 PROM 收集。我们需要确保所有接受治疗的个体都能进行代表性的 PROM 收集,无论其种族或社会经济背景如何;有偏见的数据会对政策和服务水平决策产生不利影响。