Exploring the Efficacy and Usability of the My Autism Passport (MAP) App in Service Navigation for Families of Children with Autism
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 34
- 试验地点
- 2
- 主要终点
- Number of services contacted at 6 months
研究概览
简要总结
To address developmental service navigation by families of children with autism spectrum disorder (ASD) an innovative paper-based tracking tool called the Pediatric Developmental Passport (Passport) was created by Dr. Elizabeth Young at St. Michael's Hospital. The Passport was adapted through a partnership between St. Michael's hospital and Autism Films Inc. into a mobile application called My Autism Passport (MAP). MAP allows families to learn about, and manage publicly-funded ASD services from their mobile device. Users can locate resources within their region, and track their progress in accessing services across multiple service agencies. The user can also set reminders on MAP which will be synced with their calendars, record notes, and read short summaries of the services offered by regional agencies. In this way, the application keeps families engaged, and allows them to take control of their child's care.
The feasibility of the MAP mobile application will be assessed by clinicians and end users. Clinicians from five developmental diagnostic organizations that have more than one year of experience diagnosing and providing follow up care to children with ASD will be informed of the study and invited to participate in recruitment in their respective practices. Caregivers of a child that is given a new diagnosis of ASD will be invited to participate in the study and be randomized to the control group or non control group and may have access to the application for 18 months. During the 18 month period, data on how caregivers are using the app will be collected. At 6, 12 and 18 months, caregivers will be invited to participate in questionnaires on number of services accessed, parent stress levels and self-efficacy levels. Questionnaires and interviews will be quantitatively analyzed for differences between groups, and findings will be used to improve the app prior to a larger prospective clinical trial.
详细描述
Background: To improve service navigation, the investigators created a tool for caregivers to use to track their progress in accessing services called The Pediatric Developmental Passport (Passport). The Passport is a paper based tool that is modeled after the Ontario Immunization Record. It was developed using a mixed-methods Knowledge-to-Action framework that included participation from developmental pediatricians, pediatricians, and caregivers of children with ASD.
The Passport was pilot tested through a randomized control trial (RCT), at an academic health centre (academic), and a community clinic (community) Greater Toronto Area. Of the 40 families that received a new diagnosis of ASD, the proportion of families the contacted Applied Behaviour Analysis (ABA) services was 25% greater in the intervention (Passport) group than the placebo (dummy card) group. The contact rate for ABA services was also compared within each site. The academic site revealed no significant difference between the two groups. In the community site, 50% more families in the Passport group contacted ABA services when compared to the placebo group (p=0.019).Anecdotally, caregivers who had the Passport expressed appreciation and usability of the Passport as a tracking tool. In both the design and pilot phase of the study, caregivers identified that having the Passport available in an app form would facilitate its use, and enable them to use it more often and comprehensively.
Through a partnership with Autism Films the Passport has been developed into a mobile application called My Autism Passport (MAP). The development of this mobile Application was funded by the Telus Fund, TVO and the Manitoba Digital Media Tax Credit. MAP is a mobile alternative to the paper version, and offers additional benefits such as the ability to set reminders, see regional developmental service agencies and other resources on a map, and directs the caregiver to information so that they may further their understanding about how to support their child.
Similar to the Passport, the investigators now seek to evaluate the feasibility of MAP for use by caregivers in a real world setting. Given the success of the pilot RCT with the paper version of the Passport, the investigators seek to build on what the investigators learned through the pilot RCT using MAP. The results from this pilot RCT would be used to power a larger clinical trial.
Given the recent (April 2019) changes to Autism services, it is even more important to understand how families will navigate this new system for services. A control group would help inform prospectively how families will manage this new system of care, which may be different from how families managed in our previous Passport study. The intervention arm will help the investigators evaluate the effect of MAP in real time against this baseline.
研究设计
- 研究类型
- Interventional
- 分配方式
- Randomized
- 干预模型
- Parallel
- 主要目的
- Other
- 盲法
- Double (Investigator, Outcomes Assessor)
盲法说明
Given that MAP's use is to assist parents in communication and service navigation, clinicians will be informed by the study team which family has been allocated to the MAP group. For children allocated to the control group, clinicians will be instructed to continue with usual clinical care. In the Developmental Passport Pilot study, clinicians were blinded to the intervention and the study team found this was a limitation as families were not able to share aspects of their service navigation with their health care providers (Young et al, 2019). As such, we will not blind members of the clinical team to intervention but allow both the intervention and usual care to co-occur within the pragmatic, real life setting.
入排标准
- 年龄范围
- 1 Month 至 6 Years（Child）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Families of children between 0-6 years of age, who have been diagnosed with autism spectrum disorder within the past month from five sites within the Greater Toronto Area that conduct developmental assessments will be eligible to participate in the study.
排除标准
- •Caregivers who cannot read and communicate well enough in English to use an App.
- •Caregivers who live outside of the greater toronto area.
结局指标
主要结局
Number of services contacted at 6 months
时间窗: 6 months after diagnosis
The number of services caregivers reported contacting
Number of services contacted at 18 months
时间窗: 18 months after diagnosis
The number of services caregivers reported contacting
Number of services contacted at 12 months
时间窗: 12 months after diagnosis
The number of services caregivers reported contacting
次要结局
- Parent Empowerment and Efficacy Measure at 18 months(18 months)
- Parent Empowerment and Efficacy Measure at 12 months(12 months)
- Parental Stress Scale at 6 months(6 months)
- Parental Stress Scale at 12 months(12 months)
- Parent Empowerment and Efficacy Measure at 6 months(6 months)
- Parental Stress Scale at 18 months(18 months)