Bhattarai Nawaraj, Goodwin Jane, Pelton Mirabel, Gordon Isabel, Rodgers Jacqui, Cassidy Sarah, Wagnild Janelle, Wilson Colin, Heslop Phil, Ogundimu Emmanuel, O'Connor Rory C, Ramsay Sheena E, Townsend Ellen, Vale Luke
Health Economics Group, Population Health Science Institute, Newcastle University, Newcastle upon Tyne, NE1 7RU, UK.
Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, NE1 7RU, UK.
BMC Health Serv Res. 2025 Mar 31;25(1):473. doi: 10.1186/s12913-025-12642-8.
Autism Adapted Safety Plans (AASP) have been proposed to help prevent self-harm and suicidality among autistic adults. The introduction of such plans not only needs to be clinically effective but also cost-effective. The aim of this work was to establish how the cost-effectiveness of AASP could be assessed. Specifically, whether tools and techniques used to collect data for health economic evaluation of the intervention are feasible and acceptable to autistic people.
A feasibility and external pilot randomised controlled trial of the AASP intervention was conducted. Autistic adults recruited from diverse locations in England and Wales were randomised to either: AASP and usual care, or usual care only. Health economics tools (bespoke and adapted) were developed and focus groups were undertaken with participants, including autistic adults (n = 15), their family members/carers (n = 5), and service providers (n = 10), to determine their acceptability and feasibility. Tools considered worth further exploration were interviewer administered to participants during the pilot trial at baseline and at 6 months. Interviewer notes were used to record any issues reported while completing the tools. Response rates on the questions and completeness of the tools, along with participant feedback in the interviewer notes was assessed.
Standard Gamble and Time-Trade Off approaches to measure health status were judged inappropriate to measure health outcomes with autistic adults experiencing suicidal ideation and with a history of self-harm. Contingent valuation and discrete choice experiments were also considered inappropriate, due to the heavy cognitive burden on respondents. The EQ-5D-5L/VAS, resource utilisation questionnaire and time-travel questionnaire were considered acceptable by participants. Response and completion rates (as a percentage of all returned questionnaires) for resource utilisation questionnaire (> 85%), time-travel questionnaire (> 79%), EQ-5D-5L (> 96%) and EQ-5D-VAS (> 87%) were good in general. Participants needed clear guidance and interviewer support to enable questionnaire completion.
It is feasible and acceptable to collect relevant data on resource utilisation, and costs of accessing care and the EQ-5D-5L in a future definitive trial. Clear guidance and interviewer support on how to complete the questionnaires and explanations of the importance of questions to the research would help autistic participants completing the health economic tools.
ISRCTN70594445; Trial Registration Date: 06/07/2020.
已提出自闭症适应性安全计划（AASP）以帮助预防自闭症成年人的自我伤害和自杀行为。引入此类计划不仅需要具有临床有效性，还需要具有成本效益。这项工作的目的是确定如何评估AASP的成本效益。具体而言，用于收集干预措施健康经济评估数据的工具和技术对自闭症患者来说是否可行且可接受。
对AASP干预措施进行了可行性和外部试点随机对照试验。从英格兰和威尔士不同地点招募的自闭症成年人被随机分为两组：AASP与常规护理组，或仅常规护理组。开发了健康经济学工具（定制和改编），并与参与者进行了焦点小组讨论，参与者包括自闭症成年人（n = 15）、他们的家庭成员/照顾者（n = 5）和服务提供者（n = 10），以确定这些工具的可接受性和可行性。在试点试验的基线和6个月时，对认为值得进一步探索的工具由访谈者对参与者进行管理。访谈者记录用于记录在完成工具过程中报告的任何问题。评估问题的回答率和工具的完整性，以及访谈者记录中的参与者反馈。
对于有自杀意念和自我伤害史的自闭症成年人，用于测量健康状况的标准博弈法和时间权衡法被认为不适用于测量健康结果。由于给受访者带来沉重的认知负担，意愿评估法和离散选择实验也被认为不合适。参与者认为EQ-5D-5L/VAS、资源利用问卷和时间旅行问卷是可接受的。资源利用问卷（> 85%）、时间旅行问卷（> 79%）、EQ-5D-5L（> 96%）和EQ-5D-VAS（> 87%）的回答率和完成率（占所有返回问卷的百分比）总体良好。参与者需要明确的指导和访谈者的支持才能完成问卷。
在未来的确定性试验中收集有关资源利用、获得护理的成本和EQ-5D-5L的相关数据是可行且可接受的。关于如何完成问卷的明确指导和访谈者的支持，以及对问题对研究重要性的解释，将有助于自闭症参与者完成健康经济学工具。
ISRCTN70594445；试验注册日期：2020年7月6日。
