Psychosocial well-being and health-related quality of life in a UK population with Usher syndrome

• Published in: BMJ open Vol. 7; no. 1; p. e013261
• Main Authors: Dean, Gavin, Orford, Amy, Staines, Roy, McGee, Anna, Smith, Kimberley J
• Format: Journal Article
• Language: English
• Published: England BMJ Publishing Group LTD 01-01-2017; BMJ Publishing Group
• Subjects: Adaptation, Psychological; Adult; Aged; Blindness; Chronic illnesses; Deafness; Depression - epidemiology; Female; Health Status Indicators; Health Surveys; Hearing loss; Humans; Loneliness; Loneliness - psychology; Male; Mental depression; Middle Aged; Older people; Ophthalmology; Population; Public health; Quality of Life; Questionnaires; Registration; Self employment; Sign language; Social isolation; Social networks; Social Support; Socioeconomic Factors; United Kingdom - epidemiology; Usher Syndromes - epidemiology; Usher Syndromes - psychology; Visual impairment; United Kingdom > UK; PUBLIC HEALTH; OPHTHALMOLOGY
• ISSN: 2044-6055; 2044-6055
• DOI: 10.1136/bmjopen-2016-013261

ObjectivesTo determine whether psychosocial well-being is associated with the health-related quality of life (HRQOL) of people with Usher syndrome.SettingThe survey was advertised online and through deafblind-related charities, support groups and social groups throughout the UK.Participants90 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.Primary and secondary outcome measuresAll 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.ResultsAfter 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).ConclusionsDepression, 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.