Disease burden

Background and purpose: Data on the disease burden of Duchenne Muscular Dystrophy are scarce in Hungary. The aim of this study was to assess patients' and their care-givers' health related quality of life and healthcare utilisations.

Methods: A cross sectional survey was performed as part of the European BURQOL-RD project. The EQ-5D-5L and Barthel Index questionnaires were applied, health care utilisations and patients' informal carers were surveyed.

Background: Rare and severe neurological disorders in childhood not only heavily affect the life perspective of the patients, but also their caregivers and families.

Objective: Obsessive-compulsive disorder (OCD) is one of the leading causes of disability and poor quality of life, with impairment in many areas. It can also adversely affect family members and friends that the person lives with, and this results in a burden. We aimed to evaluate the disease burden in caregivers of patients with OCD and the factors that negatively affect caregiver burden. Method: The study population consisted of 94 patients with OCD and their caregivers.

Chronic obstructive pulmonary disease (COPD) can lead to increased dependence on the informal caregiver and, consequently, to distress associated with caregiving burden. In the general population, higher levels of physical activity (PA) are related to lower distress levels; however, this relationship has been scarcely studied in COPD.

The impact of informal care immediately after pacemaker (PM) implantation has been well established; however, not much is known about its long-term effects. The present study compared personal characteristics, associated problems, workloads, time, and costs related to informal care provided to patients with PM under remote monitoring (RM) vs. conventional monitoring (CM) in the hospital, five years after implantation. The PONIENTE study was a controlled, non-randomized or masked clinical trial conducted with information obtained from the perspective of informal caregivers.

Aim.  This paper is a report of a study conducted to uncover the strategies that women caregivers of relatives with advanced dementia use to rest from care-giving.

Background.  Respite consists of activities and situations that briefly take caregivers away from their care-giving responsibilities. Qualitative studies are focusing on respite as an outcome and are deepening our knowledge about the experience of caregivers’ rest. The strategies that caregivers use to relieve the burden, however, are not fully known.

Currently, 5.4 million persons in the USA are diagnosed with dementia, and this number is projected to rise to 7.7 million by the year 2030. Family caregivers provide up to 80% of the care needed by persons with dementia and published work suggests that caring for persons with dementia can be very costly to caregivers' health. This study examined the mediating and the moderating effects of positive cognitions on the relationship between caregiver burden and resourcefulness in 80 caregivers of persons with dementia.

BACKGROUND: There are few published health technology assessments that have included the impact of a disease or treatment on caregivers' health related quality of life (HRQL). The objectives of this study were to explore the overall HRQL of caregivers of people with multiple sclerosis compared to matched controls, and more specifically explore the impact of different levels of functioning in people with MS on caregivers' HRQL scores. METHODS: A cross sectional observational study conducted as an online survey was undertaken in the UK.