Purpose: Friedreich ataxia (FRDA) is a chronic, progressive and highly disabling cerebellar degenerative disease. Despite this, little attention has been paid to the health-related quality of life (HRQOL) in this disease. The aim of the present study was to assess FRDA patients' perception of HRQOL and to determine the influence of depression, and demographic and clinical variables.
Method: The sample consisted of 62 patients with genetically confirmed FRDA. The SF-36 Health Survey was used to assess HRQOL. Depressive symptoms were evaluated with the Beck Depression Inventory-II.
Results: FRDA patients' mean scores were significantly lower than the values for the Spanish population in all SF36 dimensions. Average z scores ranged from - 5.5 in physical functioning to - 0.48 in mental health. Age and clinical variables were significant predictors of HRQOL in only several dimensions, whereas BDI scores were able to predict a significant percentage of variance in all SF36 dimensions, except physical functioning.
Conclusions: Our study demonstrates the high impact of Friedreich ataxia on quality of life. This impact does not only occur in those aspects most related to motor disability but it is also present in non-motor dimensions. Depressive symptomatology is the most relevant variable for predicting quality of life.
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http://dx.doi.org/10.1007/s11136-019-02311-9 | DOI Listing |
JAMA Dermatol
January 2025
Department of Dermatology, University of Pennsylvania, Philadelphia.
Importance: Cutaneous chronic graft-vs-host disease (GVHD) is independently associated with morbidity and mortality after allogeneic hematopoietic cell transplant. However, the health-related quality-of-life (HRQOL) domains that are most important to patients are poorly understood.
Objective: To perform a concept elicitation study to define HRQOL in cutaneous chronic GVHD from the patient perspective and to compare experiences of patients with epidermal vs sclerotic disease.
JAMA Netw Open
January 2025
Department of Medical Statistics and Epidemiology, School of Public Health, Sun Yat-sen University, Guangzhou, China.
Importance: Spousal involvement in diabetes care is recommended theoretically, but effectiveness in clinical settings and among diverse populations is unclear.
Objective: To test the effect of a couple-based intervention among Chinese older patients with type 2 diabetes and their spouses.
Design, Setting, And Participants: This multicenter randomized clinical trial comprised 2 arms: a couple-based intervention arm and an individual-based control.
JAMA Netw Open
January 2025
Medical Oncology, The Ottawa Hospital Cancer Centre, University of Ottawa Faculty of Medicine, Ottawa, Ontario, Canada.
Importance: Evolving breast cancer treatments have led to improved outcomes but carry a substantial financial burden. The association of treatment costs with the cost-effectiveness of screening mammography is unknown.
Objective: To determine the cost-effectiveness of population-based breast cancer screening in the context of current treatment standards.
Psychol Serv
January 2025
Center for Health Equity Research and Promotion, Department of Veterans Affairs Pittsburgh Healthcare System.
Chronic insomnia is one of the most common health problems among veterans and can significantly impact health, function, and quality of life. Brief behavioral treatment for insomnia (BBTI), an adaptation of cognitive behavioral therapy for insomnia (CBT-I), was developed to help increase access to care outside of specialty settings. However, training providers alone is rarely sufficient, and implementation strategies are needed for successful uptake, adoption, and sustainable delivery of care.
View Article and Find Full Text PDFAdv Ther
January 2025
CSL Vifor, Glattbrugg, Switzerland.
Introduction: Chronic kidney disease-associated pruritus (CKD-aP) is a common, yet underdiagnosed condition among patients on hemodialysis. Considering the lack of established treatment pathways, we sought to evaluate the use of antidepressant, systemic antihistamines, or gabapentinoid medications among patients with CKD-aP in the year following pruritus assessment.
Methods: We included 6209 patients on hemodialysis in the analysis.
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