Developing an adapted parent-youth teamwork intervention to improve medication adherence among adolescents with asthma: a feasibility study

Asthma affects one in 11 children and adolescents in the UK and can have a major impact on adolescents' quality of life and their health care use. Daily use of an asthma preventer inhaler is the most effective way to reduce symptoms and allow children and adolescents to lead a normal life. Research studies have shown that adolescents in particular struggle with taking their inhaler medication regularly. Therefore, parental support for taking medication regularly is important. However, in this age group peer support becomes more and more critical. Thus, support from parents and peers can be used to help adolescents to take their medication regularly. There is currently no programme in the NHS to help parents and adolescents to take asthma medication regularly. We have identified a very promising parent-youth teamwork programme, developed and tested in the United States, that provide such support. This programme includes: (a) discussing learning materials and worksheets about reasons for taking asthma medication regularly, and about how important family communication is for taking medication; (b) using role play and problem-solving techniques to define the problem, find alternatives and solutions; (c) discussing the family's challenges associated with taking asthma medication regularly; and (d) formulating goals and realistic plans how to take asthma medication regularly. In this programme, electronic monitors (so-called smart inhalers) to be attached to the actual inhaler, were used to record if the preventer inhaler was used as prescribed. For the programme, parents and adolescents used these data to formulate their goals and actions plans. We propose to adapt this programme to the UK NHS context, and strengthen it by applying the latest research findings as well as input from adolescents, parents, and care providers. Importantly, we will develop and evaluate an additional novel component on peer support. To make this program sustainable within the UK NHS context, an asthma nurse will be delivering this programme. Therefore, we will develop a manual to efficiently train asthma nurses. After that, we will test the feasibility of this new programme with up to 10 adolescents and their parents to evaluate how it would be delivered in the UK NHS; and what adolescents, parents and care providers think about this new programme. The results of our study will pave the way to a larger scale intervention that may encourage adolescents to take their asthma medications regularly, help manage their asthma effectively, and improve their quality of life.

Asthma affects 1 in 11 children and adolescents in the UK. Taking preventer medication regularly is crucial to achieve the best levels of asthma control. High levels of asthma control are associated with less exacerbations, less health care system use and higher levels of quality of life. However, medication adherence is low, especially in adolescents. Systematic reviews show that many of the adherence problems amongst adolescents include lack of knowledge, negative attitude towards asthma (treatment) and suboptimal communication with health care providers (HCPs). Adolescents are additionally going through a challenging developmental phase and are gradually taking over responsibility for their treatment from parents. This involves activities like monitoring medication supplies and asthma symptoms, taking medication correctly, and responding to changing routines. Research shows that adherence problems are often related to parents and adolescents not negotiating the transfer of these responsibilities. Moreover, in this age group, peer support becomes crucial. There is currently no intervention in the UK NHS that facilitates the transfer of self-management responsibilities from parents to adolescents, that also targets peer support. We have identified a promising parents-youth teamwork intervention, developed and tested in the US. This intervention also comprises using electronic monitoring to obtain an objective measure of adherence to preventer medication. We propose adapting this intervention to the UK NHS context and develop a novel module on peer support. We will conduct focus groups with adolescents, parents and HCPs. We will test the feasibility and acceptability of the intervention in 10 adolescents-parents' dyads.

The results of this feasibility study will provide the opportunity to scale it up to a multi-centre RCT, where we will be able to evaluate if the intervention improves adherence, asthma control, and asthma related quality of life. If it does, this will significantly reduce acute attacks, and use of emergency services and emergency medication, which means that the UK NHS will save treatment costs. Adolescents who will take part in this intervention are more likely to take ownership of their asthma self-management and this will result in a smoother transition to adult services. The self-management strategies that the adolescents have learned within the intervention help to make medical decision making and communicating with the HCP easier. Therefore, they will be empowered to take more responsibility for their own health. Adolescents with well controlled asthma have fewer absent days at school and at work, which has a positive impact on the UK economy. Also, adolescents with well controlled asthma are more likely to be engaged in social and civic activities (social and civic engagement, e.g. volunteering), which has a positive impact on their health and well-being as well as on the society. Charities such as Asthma.uk and Chest, Heart & Stroke will be interested in our results because supporting asthma self-management as well as researching the opportunities for smart inhalers to support asthma self-management are among their priorities. Our project will provide insights into both and can therefore help to strengthen their strategies. For this research project, our public and patient involvement activities are facilitated by the Asthma UK Research Institute for Applied Research (AUKCAR) as well as by NHS NRS Children's network (formerly ScotCRN) and they will facilitate contacting Asthma.uk and other relevant charities. Moreover, we have established links with asthma.uk as they have been supporting participant recruitment for our recent research projects.