Children's Health State Preferences Learnt from Animation (CHILDSPLA)

Quality Adjusted Life Years (QALYs) are routinely used in economic evaluations to assess the effectiveness of different health care interventions. QALYs combine changes in life expectancy and in health status by weighting the time patients spend in different health states using weights which reflect how bad the health state is relative to full health. While there are several measures to estimate QALYs in adults, relatively little has been done to develop QALYs for children. Developing child-specific outcome measures is difficult because it is necessary to take into account children's cognitive ability at various ages. In addition there are some health domains, which may be less applicable below a certain age, and little reason why children should attach the same relative importance to different aspects of their health as do adults. Only a few attempts have been made to develop reliable QALYs measures for children. The Child Health Utility 9D (CHU9D) is a paediatric preference based measure designed specifically for children aged 7-11. Instead of using literature and experts' opinion the CHU9D was based on one-to-one interviews conducted with children. Despite being a reliable and effective QALY measure CHU9D presents three main limitations: being designed for self-completion it requires children to be able to read and therefore it cannot routinely be administered to children younger than 7 years without the assistance of an adult. Second: the preference weights for the CHU9D were estimated using a Standard Gamble technique from a sample of UK adults and not from children. Third: especially for severely ill children reading and completing a written questionnaire can be tiring and sometimes impossible.

Starting from the descriptive system developed for the existing CHU9D this research will investigate if an animated speaking character provides a better means of asking children about their current health than a hard copy self-completed questionnaire. If it is the case that animation provides a better means of asking children about their health, then this research study will open up an opportunity to obtain health status measurements and preference information from children so that the child-based descriptions of health would no longer have to be valued using adult preferences.

Currently many thousands of children live with chronic illnesses in the UK. Examples include congenital heart disease, which affects 8 to 9 per 1000 live births with the majority of children surviving to adulthood; the commonest inherited condition cystic fibrosis, which affects 1 in 2500 live births resulting in a current total of 9000 children and young adults living with the condition; and childhood cancers which affect 1500 new children each year with around 75% surviving long term. Children experience acute illnesses and injuries: 3.5 million children attend accident and emergency departments per year, with 25% of them representing serious health problems, and 390 thousand children are admitted to hospital in relation to a surgical procedure per year a proportion of which represent major specilialist surgeries.
Obtaining self reported health state information from children in particular those with life long health conditions or serious illnesses that require burdensome treatments is fundamental in order to understand the differences between proposed clinical interventions. Currently children undergo health care interventions, including participation in clinical trials, with benefits being measured in the absence of information obtained from them about the related effects on their quality of life. Successful development of a child friendly method for evaluation of health states and preferences directly from children themselves would add considerably to our ability to measure outcomes and evaluate the effectiveness of treatments for children.

There are three stages to this study.
(1) In the first we will develop a set of characters and short animations which can be used to obtain information from children regarding how they feel on a range of dimensions of health.

Animation can show pain in purely visual terms using exaggerated visual metaphor but crucially can also convey great subtlety of emotion. For example, huge, red throbbing thumbs, constellations circling a knocked head, bodies that turn to green rubber when feeling nausea, heartbeats that race so hard they visibly distend the chest cavity etc. The animated character is the totally controllable puppet of the animator, and like an actor it can sit in a chair in a way that suggests it is uncomfortable there, relaxed, dejected, excited. Also, the performance that is created can be refined indefinitely as it is an artefact in a way that a captured live performance is not.

(2) In the second stage we will develop an alternative to traditional questionnaires. The underlying hypothesis is that the use of animated questionnaires with touch screen data entry will have several advantages over traditional data collection with hard copies of text-based questionnaires. However, there are a number of sources of any differences between these methods and we shall establish the contribution of the use of animation itself; the presentation of information graphically; and the use of a touch screen to enter information.

(3) The final stage is to develop and test a method of eliciting health state preferences from children. It is not proposed within this project to undertake a definitive valuation of health states using a representative child population but rather to develop the method by which this could be done in a future project and to produce evidence to demonstrate its feasibility.

Since this project is primarily methodological the beneficiaries are mainly academics, albeit a wide range of academics including clinical researchers and those undertaking economic evaluation. The benefit arises from the development of a tool which can facilitate self-reporting of health status by children.

In the longer term, children themselves will benefit by virtue of being able to self-report their health and health state preferences. A number of authors have suggested that including the routine use of health status information in operational and clinical contexts can enhance patient level decision making and also help improve patients' participation in their own health decisions.

For example, if survival were the only parameter, and a decision had to be made between two cancer treatments for childhood acute lymphoblastic leukemia and one therapy has 50% of survival and the second 60% the second choice will be preferred because increases the likelihood of surviving. However, such a choice is based on incomplete information because the second treatment can be associated with better health status for the patient. Little work has been done to obtain reliable estimates of pediatric health status outcomes by clinical and health economic evaluation studies. According to Perrin, in the years between 1980 and 1995 children's and adolescents' disease spectrum shifted from somatic illnesses to psychological symptoms. This shift in type of disease requires a strong consideration of health status. It also requires subjective health valuation by children and adolescents.

Also the project offers more opportunities than most for public engagement. First, the children who participate are likely to find it a stimulating and interesting experience. Second, the animation aspect of the research has considerable potential for attracting media interest, and consequently coming to the attention of the general public. Third, the finalised tool will be made available on the internet for interested members of the public (particularly children and parents) to complete. Fourth, alongside the tool, we can provide an explanation of how and why we compare different ways of presenting information to children. This could illustrate the nature of research for a wide audience. Also, we could stimulate discussion regarding the importance of children's preferences when taking decisions affecting children.