Background: Anosognosia, or unawareness of one's deficits, is estimated to occur in 25% to 50% of Huntington disease (HD). The relationship between anosognosia and increased caregiver burden found in other dementias has not been determined in HD.
Methods: Patient-caregiver dyads presenting to a statewide HD clinic were assessed using the Anosognosia Scale and grouped into "anosognosia" and "no anosognosia." Caregiver burden, measured by Zarit Burden Interview (ZBI) and Caregiver Burden Inventory (CBI), demographic data, and Unified Huntington's Disease Rating Scale, including Mini-Mental State Examination, Stroop, Trail Making, Verbal Fluency, and Symbol Digit Modalities Tests, were compared between groups.
Results: Of the 38 patients recruited, 10 (26.3%) met criteria for anosognosia. Patients with anosognosia elicited higher caregiver burden ratings on both the ZBI (mean difference 16.4 [12.1], < .001) and CBI (16.7 [15.0], < .005) while also demonstrating poorer executive function. Except for CAG burden score, between-group characteristics did not differ significantly. Stroop Interference predicted both anosognosia and caregiver burden.
Conclusions: In HD, anosognosia is associated with greater caregiver burden and executive deficits. Its occurrence should prompt further patient assessment and increased caregiver support.
Download full-text PDF |
Source |
---|---|
http://dx.doi.org/10.1177/0891988719856697 | DOI Listing |
PLoS One
January 2025
Institute for Human Development, Aga Khan University, Nairobi, Kenya.
Introduction: Children growing up in arid and semi-arid regions of Sub-Saharan Africa (SSA) face heightened risks, often resulting in poor developmental outcomes. In Kenya, the arid and semi-arid lands (ASAL) exhibit the lowest health and developmental indicators among children. Despite these risks, some children grow up successfully and overcome the challenges.
View Article and Find Full Text PDFJ Pediatr Psychol
January 2025
Divison of Psychology & Behavioral Health, Children's National Hospital, Washington, DC, United States.
Objective: Caregiver perceived food allergy severity is associated with food allergy burden, while caregiver food allergy self-efficacy has been linked to improved quality of life for caregivers. This study examined the mediating effect of caregiver food allergy self-efficacy on the relationship between perceived food allergy severity and caregiver food allergy burden.
Methods: Caregivers of children diagnosed with IgE-mediated food allergy were recruited from pediatric allergy clinics to complete demographic and medical questionnaires, the Food Allergy Independent Measure-Parent Form, the Food Allergy Self-Efficacy Scale for Parents, and the Food Allergy Quality of Life-Parental Burden.
J Patient Exp
January 2025
Division of Health Science, Child Healthcare and Genetic Science Laboratory, Osaka University Graduate School of Medicine, Suita, Japan.
The challenges faced by patients with Krabbe disease remain unelucidated. This study aimed to identify these challenges and facilitate the development of methods for assessing the quality of life. This qualitative descriptive study used in-person or online semistructured interviews from March to December 2022 using a qualitative content analysis approach.
View Article and Find Full Text PDFAm J Med Genet A
January 2025
Center for Molecular Medicine and Genetics, Wayne State University School of Medicine, Detroit, Michigan, US.
The American Academy of Pediatrics (AAP) health supervision guidelines for children with Down syndrome are important for preventative and symptom-based care. Studies, however, have shown low overall adherence to these care recommendations due to a lack of provider familiarity, inaccessibility of a medical home, and caregiver burden. In a population of children with Down syndrome, using a retrospective chart review, we evaluated overall patient adherence to the medical components of the 2011 AAP guidelines, along with potential influencing factors, to determine if there was a difference in adherence between those who had genetic counseling and those who had not.
View Article and Find Full Text PDFNeurocrit Care
January 2025
Center for Health Outcomes and Interdisciplinary Research, Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
Background: Family caregivers of patients with severe acute brain injury (SABI) are at risk for clinically significant chronic emotional distress, including depression, anxiety, and posttraumatic stress. Existing psychosocial interventions for caregivers of intensive care unit (ICU) patients are not tailored to the unique needs of caregivers of patients with SABI, do not demonstrate long-term efficacy, and may increase caregiver burden. In this study, we explored the needs and preferences for psychosocial services among SABI caregivers to inform the development and adaptation of interventions to reduce their emotional distress during and after their relative's ICU admission.
View Article and Find Full Text PDFEnter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!