Dealing with busy Teens: How understanding patients with a rare metabolic disorder helped Nutricia to engage with young teens using an Online Market research community

Robert Dossin and Sarah Manley
InSites Consulting and Nutricia


Nutricia Advanced Medical Nutrition, part of the Danone group wanted to strengthen their support for teens (14+ years) who are suffering from a rare inherited metabolic disorder called Phenlyketonuria (PKU). Traditionally their relationship is mainly with healthcare professionals (HCP) and, through them, young families affected by PKU. However when these children grow older and become more independent, engagement wanes and regular contact between the HCP, Nutricia and the teens lessens. In addition, compliance with protein substitutes significantly decreases during teen years. This is why the Nutricia's brand team in the UK worked with InSites Consulting to understand the day to day reality of living with PKU as a teenager and understand the drivers and barriers for compliance with their special diet. Given these objectives it was decided to set up a 3 week online research community 'PKU and you' with these teens.