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

Abstract

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.

Life strategies of people with deafblindness due to Usher syndrome type 2a - a qualitative study

“…However, the process of using support was delicate, especially in situations where the participants had finally overcome their own inner conflict about accepting support, only to find the authorities questioning their need for it. Research has shown that lack of support entails a significant risk of loneliness and low quality of life among people with USH (Dean et al, 2017). At the same time, increasing levels of social support predicted high levels of mental health-related quality of life (Dean et al, 2017).…”

“…Research has shown that lack of support entails a significant risk of loneliness and low quality of life among people with USH (Dean et al, 2017). At the same time, increasing levels of social support predicted high levels of mental health-related quality of life (Dean et al, 2017). The lack of and unequal distribution of support among people with USH is unfortunately one of the most common themes reported in research on persons with USH (e.g., Dean et al, 2017;Ellis & Hodges, 2013;Evans, 2017;Schneider, 2006).…”

“…Such diversity could pose a threat to conclusive study results. Nevertheless, depression and loneliness have been shown to be common and strongly related to perceived poor quality of life in persons with USH, where the importance of receiving social support has been emphasized (Dean, Orford, Staines, McGee, & Smith, 2017). High levels of stress are common (Högner, 2015).…”

Correlates of the quality of life of adolescents in families affected by HIV/AIDS in Benue state, Nigeria

“…Psychosocial factors (Psychological and the surrounding social enviromnental factors of individuals) have great impacts, not only on their physical and mental wellness but also on their ability to function in day to day activities (Dean, Oxford, Staines et al, 2017; Woodward, 2015; Singh-Manoux, 2003). Psychosocial problems have been recognized as an increasing public health challenge globally.…”

Similarities and Differences in Health, Social Trust, and Financial Situation in People With Usher Syndrome, a Bio-Psychosocial Perspective

“…In a study of psychological health and its relation to health-related quality of life, Dean et al (2017) found that, depression, loneliness and lack of social support were associated with poorer psychological wellbeing in persons with USH living in the United Kingdom. Poorer psychological and physical health has been described in Swedish studies that report on the health of persons with USH1, USH2, and USH3, respectively ( Wahlqvist et al, 2013 , 2016a , b ).…”