Publications by authors named "Jeanette Ullmann Miller"

Article Synopsis
  • The study focuses on congenital aniridia, an eye condition where the iris is absent, and examines how it affects the health-related quality of life (HRQoL) of adults.
  • Results showed that adults with aniridia had significantly lower HRQoL scores compared to the general population, indicating poorer health perceptions.
  • The study found that low HRQoL was linked to factors like ocular pain, higher anxiety and depression symptoms, and obesity.
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Background: Congenital aniridia is a rare genetic disorder of the eye characterized by visual impairment and progressive vision loss. While prior research has focused on ocular manifestations in individuals with aniridia, there is a dearth of research on impacts on cognition and mental health. The aims of this study were to describe subjective symptoms of everyday executive functioning, fatigue and sleepiness in adults with aniridia and to compare self-reported health status with that of a normative reference group.

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Objective: A visible difference in appearance caused by a congenital or acquired condition can negatively affect adolescents' psychosocial well-being. Young Person's Face IT (YPF) is an online intervention based on cognitive behavioural therapy and social skills training, developed to help adolescents who struggle with adjusting to a visible difference. The objective of the present study was to explore adolescents' and parents' perceptions of the intervention's relevance and usefulness in supporting young people with appearance-related psychosocial concerns.

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Background: Huntington's disease (HD) is a neurodegenerative disease characterized by a triad of motor, cognitive and psychological symptoms, leading to a gradual breakdown of communication skills. Few studies have investigated how people affected by HD and their professional caregivers, for example, medical doctors, physiotherapists and nurses, experience the patients' gradual loss of speech and language.

Aims: To examine communication-related experiences of patients and professional caregivers.

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