Development and pilot of a novel digital puberty self-assessment tool
Lead Research Organisation:
University College London
Department Name: Institute of Child Health
Abstract
As young people grow up and move from childhood to adulthood, one of the key changes they experience is puberty. Puberty is the process that changes our bodies so that we can have children, but the hormones that control puberty are involved with many other changes as well. Puberty can be linked to the feelings of low mood and anxiety that some young people experience, how they grow and sleep, and how they may think and behave. If we can understand these links with puberty, we can work out how young people develop in different ways, and consider what happens for some young people when these changes go wrong. However, doing puberty research is challenging as the current tools are not accurate or young person friendly and do not represent the diversity of young people in the UK today.
Our project aims to develop a new digital way for young people to report the puberty changes they have noticed in their bodies. We will make this easy and safe for young people to use and inclusive for the whole range of young people. This new 'tool' will need to be accurate but without needing a doctor examination. Young people will be involved in all stages of the development of the tool, with young designers as active members of the design team. They will work with a highly experienced team of children and young people's doctors, computer programmers, graphics designers, and specialists in ethics and statistics, based at University College London and Great Ormond Street Hospital for Children.
This new digital tool will be designed to work on tablets or computers. First a young person will choose from a set of drawn figures on the screen which looks most like them in terms of skin tone, and body shape and size. Only the young person will see their figure, which won't show faces. It will not be seen by any of the researchers or doctors. Next, the tool will guide a young person through aspects of their puberty development, explaining the stages of development that usually happen with pictures and words written with other young people, and asking the young person if they have noticed those changes in their body. The changes they are asked about will depend on whether they were identified as male or female at birth, and the reasons for this will be explained in the tool.
Being asked about puberty can be uncomfortable and embarrassing. The tool's design will seek to reduce this as much as possible by having: (1) language that is young person friendly and inclusive; (2) reassurance that all our bodies and development are different; (3) information on who to speak to if the young person has any worries or concerns; and (4) a number of safety and privacy features.
Pilot study: The new digital puberty tool will be tested by asking 120 young people aged 8-16 years to try it out. These will be young people attending hospital clinics who are having a doctor puberty examination as part of their normal medical care. The pilot study will show if the new tool is accurate by comparing the answers young people give to the doctor ratings, and will ask the young person their opinions about the tool including how easy it is to use and how understandable it is.
Project Impact: This new digital puberty assessment tool will allow researchers to measure puberty more accurately in their studies, including the planned Adolescent Health Study. This will improve our understanding of how puberty is involved with the development of mental and physical health problems during adolescence and the role of puberty in the development of adolescent behaviours, sleep and nutrition. Unlike the current options for measuring puberty, the new tool will be developed with young people and be designed to be young person friendly and to represent the diverse range of young people in our society. We hope that this will mean that more young people will agree to take part in research, and that the research that happens includes the views and experiences of all young people.
Our project aims to develop a new digital way for young people to report the puberty changes they have noticed in their bodies. We will make this easy and safe for young people to use and inclusive for the whole range of young people. This new 'tool' will need to be accurate but without needing a doctor examination. Young people will be involved in all stages of the development of the tool, with young designers as active members of the design team. They will work with a highly experienced team of children and young people's doctors, computer programmers, graphics designers, and specialists in ethics and statistics, based at University College London and Great Ormond Street Hospital for Children.
This new digital tool will be designed to work on tablets or computers. First a young person will choose from a set of drawn figures on the screen which looks most like them in terms of skin tone, and body shape and size. Only the young person will see their figure, which won't show faces. It will not be seen by any of the researchers or doctors. Next, the tool will guide a young person through aspects of their puberty development, explaining the stages of development that usually happen with pictures and words written with other young people, and asking the young person if they have noticed those changes in their body. The changes they are asked about will depend on whether they were identified as male or female at birth, and the reasons for this will be explained in the tool.
Being asked about puberty can be uncomfortable and embarrassing. The tool's design will seek to reduce this as much as possible by having: (1) language that is young person friendly and inclusive; (2) reassurance that all our bodies and development are different; (3) information on who to speak to if the young person has any worries or concerns; and (4) a number of safety and privacy features.
Pilot study: The new digital puberty tool will be tested by asking 120 young people aged 8-16 years to try it out. These will be young people attending hospital clinics who are having a doctor puberty examination as part of their normal medical care. The pilot study will show if the new tool is accurate by comparing the answers young people give to the doctor ratings, and will ask the young person their opinions about the tool including how easy it is to use and how understandable it is.
Project Impact: This new digital puberty assessment tool will allow researchers to measure puberty more accurately in their studies, including the planned Adolescent Health Study. This will improve our understanding of how puberty is involved with the development of mental and physical health problems during adolescence and the role of puberty in the development of adolescent behaviours, sleep and nutrition. Unlike the current options for measuring puberty, the new tool will be developed with young people and be designed to be young person friendly and to represent the diverse range of young people in our society. We hope that this will mean that more young people will agree to take part in research, and that the research that happens includes the views and experiences of all young people.
Technical Summary
There is interdisciplinary consensus that the limitations of the current tools available to measure puberty development present a barrier to robust puberty-focussed research. Our aim is to co-develop with young people an innovative digital puberty self-assessment tool for use by children and young people (CYP) aged 8-18 years that is an accurate and reliable alternative to clinician assessment, and is acceptable, inclusive and young person friendly.
The tool will be web-based and designed for use across tablet, laptop and desktop devices. In it, a young person will choose from a set of drawn figures on the screen which looks most like them in terms of skin tone, and body shape and size. The tool will guide CYP to help them assess their own pubertal development for each of breast (natal females), external genitalia (natal males) and pubic hair. Developmental milestones based on established Tanner stages will be explained to CYP using interactive labelled images and the CYP's representative figure with young person friendly text and definitions for unfamiliar words. The tool will also incorporate questions asking about the presence/absence and timing of pubertal signs drawn from the written PDS questionnaire, including (as sex appropriate) development of axillary, body and facial hair, body odour, voice changes, nocturnal emissions and menarche.
The tool will be piloted on 120 CYP aged 8-16 years attending paediatric endocrinology clinics and undergoing physical pubertal assessment as part of routine clinical care. The primary outcome will be percentage agreement of Tanner stage to physician assessment using kappa statistics. Secondary outcomes will include acceptability and ease of use for CYP and caregivers, concerns/discomfort using tools, agreement between new digital tool and other self-assessment measures. The results will be published in peer-reviewed journals, the anonymised data made openly available, and the tool made available for puberty research.
The tool will be web-based and designed for use across tablet, laptop and desktop devices. In it, a young person will choose from a set of drawn figures on the screen which looks most like them in terms of skin tone, and body shape and size. The tool will guide CYP to help them assess their own pubertal development for each of breast (natal females), external genitalia (natal males) and pubic hair. Developmental milestones based on established Tanner stages will be explained to CYP using interactive labelled images and the CYP's representative figure with young person friendly text and definitions for unfamiliar words. The tool will also incorporate questions asking about the presence/absence and timing of pubertal signs drawn from the written PDS questionnaire, including (as sex appropriate) development of axillary, body and facial hair, body odour, voice changes, nocturnal emissions and menarche.
The tool will be piloted on 120 CYP aged 8-16 years attending paediatric endocrinology clinics and undergoing physical pubertal assessment as part of routine clinical care. The primary outcome will be percentage agreement of Tanner stage to physician assessment using kappa statistics. Secondary outcomes will include acceptability and ease of use for CYP and caregivers, concerns/discomfort using tools, agreement between new digital tool and other self-assessment measures. The results will be published in peer-reviewed journals, the anonymised data made openly available, and the tool made available for puberty research.
