{
  "abstract": "Objective Children with Robin sequence (RS) are characterised by micrognathia/retrognathia, glossoptosis and upper airway obstruction, often resulting in hypoxemic episodes and growth failure, potentially impairing their health-related quality of life (HRQoL). Few studies, however, have yet tried to objectively quantify HRQoL in children with RS. The aim of this cohort study was to investigate HRQoL in children with RS 7–11 years after treatment with the Tübingen palatal plate (TPP) in infancy.Methods Using two generic health-related QoL-questionnaires from the parental and child perspective (KINDL-R and KDISCREEN-52) and also the cleft-specific CLEFT-Q questionnaire for children, HRQoL was assessed in 17 children with isolated RS (mean age 8.5 years) and compared with that of 24 children with a cleft palate (± cleft lip, no RS; mean age 8.1 years). Results were also compared with data from a representative European reference cohort.Results HRQoL was similar in children with clefts and those with RS and better than that of the reference cohort. In the subscales ‘Bullying’ (proxy 47%, self 65%) and ‘Financial Resources’ (proxy 65%, self 71%) the proportion of children with above average results was even three to four times larger than in the reference population (16%).Conclusion These results suggest a good HRQoL at primary school age in these children following TPP therapy in infancy.",
  "authors": [
    {
      "affiliations": [
        "Neonatology, University of Tübingen, Tübingen, Germany"
      ],
      "name": "Hannah Kiefer"
    },
    {
      "affiliations": [
        "Neonatology, University of Tübingen, Tübingen, Germany",
        "Interdisciplinary Centre for Cleft Palate and Craniofacial Malformations, University of Tübingen, Tübingen, Germany"
      ],
      "name": "Christian F Poets"
    },
    {
      "affiliations": [
        "Neonatology, University of Tübingen, Tübingen, Germany"
      ],
      "name": "Cornelia Wiechers"
    },
    {
      "affiliations": [
        "Neonatology, University of Tübingen, Tübingen, Germany"
      ],
      "name": "Ann-Cathrine Neukamm"
    },
    {
      "affiliations": [
        "Interdisciplinary Centre for Cleft Palate and Craniofacial Malformations, University of Tübingen, Tübingen, Germany",
        "Department of Maxillofacial surgery, University of Tübingen, Tübingen, Germany"
      ],
      "name": "Andreas Naros"
    },
    {
      "affiliations": [
        "Department of Orthodontics, University of Tübingen, Tübingen, Germany"
      ],
      "name": "Hannah Finke"
    },
    {
      "affiliations": [
        "Neonatology, University of Tübingen, Tübingen, Germany"
      ],
      "name": "Karen Birgit Kreutzer"
    }
  ],
  "title": "Health-related quality of life in children with Robin sequence following Tübingen palatal plate treatment in infancy",
  "uid": "3ce0c069-4641-5af7-a261-cc4775ec0353"
}