title: Psychosocial well-being and health-related quality of life in a UK population with Usher syndrome.
abstract: To determine whether psychosocial well-being is associated with the health-related quality of life (HRQOL) of people with Usher syndrome.
  
  
  
  The survey was advertised online and through deafblind-related charities, support groups and social groups throughout the UK.
  
  
  
  90 people with Usher syndrome took part in the survey. Inclusion criteria are having a diagnosis of Usher syndrome, being 18 or older and being a UK resident.
  
  
  
  All participants took part in a survey that measured depressive symptoms, loneliness and social support (predictors) and their physical and mental HRQOL (outcomes). Measured confounders included age-related, sex-related and health-related characteristics. Hierarchical multiple linear regression analyses examined the association of each psychosocial well-being predictor with the physical and mental HRQOL outcomes while controlling for confounders in a stepwise manner.
  
  
  
  After adjusting for all confounders, psychosocial well-being was shown to predict physical and mental HRQOL in our population with Usher syndrome. Increasing depressive symptoms were predictive of poorer physical (β=-0.36, p<0.01) and mental (β=-0.60, p<0.001) HRQOL. Higher levels of loneliness predicted poorer mental HRQOL (β=-0.20, p<0.05). Finally, increasing levels of social support predicted better mental HRQOL (β=0.19, p<0.05).
  
  
  
  Depression, loneliness and social support all represent important issues that are linked with HRQOL in a UK population with Usher syndrome. Our results add to the growing body of evidence that psychosocial well-being is an important factor to consider in people with Usher syndrome alongside functional and physical impairment within research and clinical practice.
authors.affiliation: Department of Life Sciences, Brunel University London, Uxbridge, Middlesex, UK.
authors.forename: Gavin
authors.initials: G
authors.lastname: Dean
authors.affiliation: Department of Life Sciences, Brunel University London, Uxbridge, Middlesex, UK.
authors.forename: Amy
authors.initials: A
authors.lastname: Orford
authors.affiliation: UsherVibe Group, Croyden, Surrey, UK.
authors.forename: Roy
authors.initials: R
authors.lastname: Staines
authors.affiliation: Research Group, Sense UK, London, UK.
authors.forename: Anna
authors.initials: A
authors.lastname: McGee
authors.affiliation: Department of Life Sciences, Brunel University London, Uxbridge, Middlesex, UK.|Ageing Studies Research Group, Institute of Health, Environment and Societies. Brunel University London, Uxbridge, Middlesex, UK.
authors.forename: Kimberley J
authors.initials: KJ
authors.lastname: Smith
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D003863:Depression / Q000453:epidemiology*; D005260:Female; D006305:Health Status Indicators; D006306:Health Surveys; D006801:Humans; D008132:Loneliness / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D012944:Social Support; D012959:Socioeconomic Factors; D006113:United Kingdom / Q000453:epidemiology; D052245:Usher Syndromes / Q000453:epidemiology / Q000523:psychology*
keywords: OPHTHALMOLOGY; PUBLIC HEALTH