Title: Determining adolescent patient and parent priorities in decision-making for treatment of hypodontia (developmentally missing teeth)
Funder: Department of Health and Social Care

Abstract: Hypodontia, the developmental absence of teeth, is a long-term childhood dental condition affecting permanent teeth in ~5% of the population. The condition has a significant impact on dental aesthetics and masticatory function (figures 1 & 2), affecting self-esteem and reducing oral health-related quality of life. Treatment frequently starts at a young age, with long and often complex treatment continuing for many years throughout childhood. This carries a high burden to the patient, parents and NHS in terms of time commitment and use of resources. While the management options for hypodontia are well understood by clinicians, patients and families report difficulties in making decisions that involve many years of treatment and consideration of aesthetics, functionality and onerous appointment schedules. There is a clear clinical need to improve shared decision-making between clinicians, patients and parents to improve patient experience and reduce dissatisfaction with care or outcome expectations. Aim To improve shared decision-making for adolescents (aged 12-16 years) with hypodontia and encourage the delivery of evidence-based care by enabling orthodontists to include patient treatment preferences systematically in their long-term planning. Objectives Determine the most important attributes of treatment for hypodontia Understand patient priorities when making treatment decisions Assess the impact of parental presence on adolescent decision-making Evaluate the validity of Discrete Choice Experiments in adolescents in the treatment of hypodontia Stage 1: Mixed methods will be used to identify which factors patients, parents and clinicians take into consideration when making treatment choices about hypodontia in order to reach an agreed treatment plan. The methods of investigation include: a) Systematic review of the literature regarding evidence-based effective treatment and surveys of patient/clinician treatment choices. b) Focus groups and short interviews with adolescents (aged 12-16 years) with hypodontia and their parents. Decision-making consultations will also be tape-recorded. c) Consultation with clinicians providing hypodontia care. Thematic content analysis will identify key attributes to facilitate design of a Discrete Choice Experiment (DCE). Stage 2: Statistical design theory will inform the construction of choice sets to formulate the DCE survey. A pilot study will present the preliminary survey to 20 participants and their parents in an interview setting, who will give think-aloud feedback throughout completion of the survey to allow assessment of usability and understanding. Modifications will be undertaken based on these findings. The survey will be rolled-out in four orthodontic units in Yorkshire. Two groups of 100 adolescent participants plus one parent of each will be recruited: Group 1; mild-moderate hypodontia (missing 1-5 teeth or >1 tooth/quadrant), Group 2; severe hypodontia (>6 missing teeth). Two versions of the survey may be produced for the two different groups to overcome the possibility that different treatments may be indicated for different severities of hypodontia. This will be decided based on findings of stage 1 and advice from Marti (supervisor). The survey will be completed with and without a parent present to evaluate whether parental presence alters choices. Statistical analysis will determine the main effect of and interaction between each attribute to indicate their relative importance to the participants. Stage 3: Validity will be assessed by contacting a sample of 30 participants who completed the DCE survey and discussing how they made their choices, how this changed when a parent was present, and whether the conclusions drawn from the DCE reflects how they decide about treatment. Dissemination: Results will be shared with patients/parents, clinicians and NHS commissioners to encourage improved patient decision-making. A website will be developed as a medium to carry out the DCE and survey stakeholders about their treatment preferences, which will later be converted into a patient resource for disemination of findings.

Lay abstract: Sometimes teeth do not develop and are missing, this is called hypodontia. It can affect baby and adult (permanent) teeth and varies in severity from one to many missing teeth. Hypodontia is relatively common, affecting approximately 5% of the population (1 in 20 people). This is a life-long condition and can have significant impact on patient's self-esteem and quality of life. Teeth missing in the front of the mouth can cause concerns with appearance (figure 2), while lots of missing teeth can limit what children and young people can eat (figure 1). Different treatments are available and vary depending on the number of missing teeth, the size of gaps between the teeth and whether the baby teeth are healthy. Treatment usually involves wearing fixed braces to help make spaces the correct size for bridges (false teeth) or implants to replace the missing teeth. Treatment for missing teeth often starts at a young age, although often the final decisions about management cannot be made until the adult teeth have erupted into the mouth (around 12-14 years old). If bridges or implants are required, treatment will often continue into adulthood at considerable cost to the patient, family and the NHS. Currently it is not clear what is important to patients when they are making decisions about treatment for missing teeth. Patients and their families report difficulties in making decisions that involve many years of treatment and a demanding number of appointments, as well as affecting their appearance and the ability to chew. Shared decision-making is defined the NHS as the conversation that happens between a patient and their health professional to reach a healthcare choice together. This conversation needs patients and professionals to understand what is important to the other person when choosing a treatment. Shared decision-making is difficult to achieve and often the dentist will decide which treatment is given. In this research we plan to use Discrete Choice Experimentation (DCE) to investigate which parts of treatment for missing teeth are most important to patients and their parents. This will directly benefit patients by helping dentists to provide information and care that is in line with patient values and lifestyle. The findings will also provide essential information for future research into the effective use of resources in the NHS. The first part of the study aims to look at existing data (published in journals) to identify patient/parent and dentist views about the different ways of managing missing teeth. New information will be collected through focus groups and short interviews with adolescent patients (aged 12-16 years) and their parents to ask them directly about their experiences of missing teeth. This will be combined with information from discussions with dentists who treat people with missing teeth and together it will show the important parts of treatment for people with missing teeth from a patient/parent and dentist viewpoint.The information will be used to design the Discrete Choice Experiment (DCE) survey, a questionnaire where people pick from different options about treatment based on what they think is important. A draft survey will be tested by a small pilot group of 20 adolescents with missing teeth and their parents in an interview setting. The participants will give think-aloud feedback when they are completing the survey that will check it is easy to use. Changes will be made to the survey to overcome any problems that are found. Following this, surveys will be given to 200 adolescents (aged 12-16 years) plus one parent for each, across four orthodontic departments in Yorkshire. Participants in one group will have mild-moderate hypodontia (missing 1-5 teeth involving front teeth or more than 1 tooth missing in a quadrant of the mouth) and in the second group they will have severe hypodontia (>6 missing teeth).Different options within the survey might be offered to people based on how many teeth they are missing. The participants will complete the survey alone and then again with a parent to allow comparison between the choices made when a parent is and is not present. Analysis of the results will indicate the choices people make about treatment for missing teeth.The results of the research will be shared with patient groups and dentists to encourage improved decision-making. A website will be created to help patients/parents and dentists make decisions when planning care for people with missing teeth. The website can also be used for future research.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: ORAL AND GASTROINTESTINAL