Objectives We investigated the quality of life (QOL) in parents of children with late treated phenylketonuria (PKU) and its associated factors. Methods We conducted a cross sectional study in the reference center of inherited metabolic disease in Tunisia. We used the Tunisian version of the 36-item short-form health survey questionnaire (SF-36). We compared variables in the groups with and without impaired QOL and the SF-36 scores between subgroups of parents and children and between our sample and the Tunisian general population based on published data. We looked for associations between SF-36 scores and quantitative variables. Linear regression and logistic binary regression were used for multivariate analysis. Results Sixty-five parents from 42 families participated. QOL was impaired in 61% of them. The mean SF-36 score was 55.3 ± 25.07. The physical component sub-score was higher than that reported in the Tunisian general population (63.66 ± 27.77 vs. 50.11 ± 8.53; p<0.001). The mental component sub-score was comparable to that reported in the Tunisian general population (46.99 ± 25.94 vs. 47.96 ± 9.82; p=0.830). Gender (mothers) (p=0.008), low monthly income (p = 0.027), low education (p=0.011), and autism in PKU children (p = 0.001) were associated with impaired QOL. Conclusions We identified at risk parents for altered quality of life among parents of PKU children. Our findings were used to develop a psychological and social support strategy for at-risk parents and to promote the implementation of newborn screening of this treatable disease in our low-income country.
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http://dx.doi.org/10.1515/jpem-2020-0035 | DOI Listing |
Alzheimers Dement
December 2024
Department of Clinical, Educational, and Health Psychology, Division of Psychology and Language Sciences, University College London, London, United Kingdom.
Background: Familial frontotemporal dementia is an autosomal dominant heritable form of frontotemporal dementia, a form of dementia characterised by changes in personality, behaviour and communication which typically onsets in mid-life. Children of an affected parent are at 50% risk of inheriting the responsible genetic mutation and developing frontotemporal dementia themselves. Individuals living at-risk have high psychological morbidity, for example they report struggling with guilt and anxiety about risk to themselves and their children, decisions about whether to get tested, uncertainty about onset of symptoms, and see their risk as a barrier in life.
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December 2024
Millennium Institute for Care Research, Santiago, Chile.
Background: The risk of developing loneliness in informal carers of people with dementia is high. Individual and cultural factors might play a differentiated role in the explanation of loneliness. The aim of this study was to describe loneliness levels in a group of family carers in Chile and its associated factors.
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December 2024
Neurogenetics Research Center, Instituto Nacional de Ciencias Neurológicas, Lima, Peru.
Background: Frontotemporal dementia (FTD) is a clinical syndrome characterized by progressive changes in behavior, executive function, or language. In Latin America, persons with FTD are underrecognized or diagnosed late. There is a lack of knowledge about the experiences have on families.
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December 2024
Samvedna Senior Care Foundation, Gurugram, India.
Background: India has a mixed public-private healthcare system however most care is out-of-pocket. Despite projections that the older population is expected to rise from current 138 million to 194 million by 2031, services catering to the needs of people living with dementia remain limited. Ailing family members and older adults have traditionally been cared for in an intergenerational joint family system where members reside together.
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December 2024
University of the West of Scotland, Paisley, Scotland, United Kingdom.
My PhD research is about Young-Onset Dementia and Career Development, focusing on women's experiences. This artwork or abstract ('artstract') represents how the research has developed to date. Understanding of career is informed by Super's (1980) Life-Span, Life-Space approach to career development, which can be understood flexibly to incorporate diverse experiences (including those of women and those living with a dementia diagnosis during working age).
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