Dataset Information

Multiple Sclerosis Adult Day Programs and Health-Related Quality of Life of Persons with Multiple Sclerosis and Informal Caregivers.

ABSTRACT: Background:Multiple sclerosis adult day programs (MSADPs) offer life-enhancing services for individuals and informal caregivers affected by multiple sclerosis (MS), including medical care, rehabilitation therapies, nutrition therapy, cognitive training, tailored education, exercise programs, and social interaction. The purpose of this study was to examine the effects of MSADPs on health-related quality of life (HRQOL) and health care utilization of persons with MS and HRQOL and well-being of informal caregivers. Methods:Using a quasi-experimental design, outcomes between baseline and 1-year follow-up in persons with MS and informal caregivers who used MSADP services and a comparison group of similar persons with MS and caregivers who did not use MSADP services were compared. For persons with MS, outcomes included standardized measures of physical and mental HRQOL and health care utilization. For caregivers, outcomes included physical and mental HRQOL and well-being. Changes in outcomes between baseline and follow-up were examined using propensity score-weighted difference-in-differences regression analysis. Results:For persons with MS, MSADP use had a significant positive effect on 12-Item Short Form Health Survey physical component scores, although the difference was not clinically meaningful. Use of MSADPs did not have effects on any other outcomes for persons with MS or caregivers. Conclusions:Use of MSADPs did not show a clinically meaningful effect on HRQOL for persons with MS or informal caregivers. The MSADPs do not seem to offer sustained benefits to persons with MS or caregivers, but the possibility of initial short-term benefits cannot be ruled out.

SUBMITTER: Gasper JM

PROVIDER: S-EPMC7446630 | biostudies-literature | 2020 Jul-Aug

REPOSITORIES: biostudies-literature

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Multiple Sclerosis Adult Day Programs and Health-Related Quality of Life of Persons with Multiple Sclerosis and Informal Caregivers.

Gasper Joseph M JM Lewis Megan M Kroeger Anne A Muz Ben B LaRocca Nicholas N Frankel Debra D

International journal of MS care 20200109 4

<h4>Background</h4>Multiple sclerosis adult day programs (MSADPs) offer life-enhancing services for individuals and informal caregivers affected by multiple sclerosis (MS), including medical care, rehabilitation therapies, nutrition therapy, cognitive training, tailored education, exercise programs, and social interaction. The purpose of this study was to examine the effects of MSADPs on health-related quality of life (HRQOL) and health care utilization of persons with MS and HRQOL and well-bein ...[more]

PMID: 32863787

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Project description:BackgroundReforms in the Dutch healthcare system in combination with the aging of the population will lead to a strong increase in the demand for informal care in the Netherlands. A hip fracture is one of the most important causes of hospital admissions among frail elderly and informal caregivers experience stress that may have significantly negative impact on the caregivers' Quality of Life. The purpose of the study was to determine the nature, intensity and the care-related Quality of Life (CarerQoL) of informal caregivers of elderly patients in the first six months after a hip fracture. In this cross-sectional study, were interviewed the primary informal caregivers of patients with a hip fracture about the informal care provided after one, three or six months following the injury. The CarerQoL of the informal caregivers was measured with the CarerQoL-7D instrument.ResultsIn total, 123 primary informal caregivers were included. The CarerQoL-7D score was on average 83.7 (SD 15.0) after one, three and six months, and there were no major differences between the measurement time points. The average amount of informal care provided per patient per week was 39.5 during the first six months.Partners of patients with a hip fracture provided significantly more hours of informal care (β 34.0; 95% CI: 20.9 - 47.1). Female informal caregivers stated a significantly lower level of CarerQoL (β -7.8; 95% CI: -13.3 - -2.3). Female caregivers were 3.0 times more likely to experience relational problems (aOR 3.02; 95% CI 1.08-8.43). Caregivers provided care at 6 months were associated with physical health problems (aOR 2.54; 95% CI 1.05-6.14).ConclusionsInformal caregivers, especially partners, are faced with providing care of greater intensity to elderly patients during the first six months after a hip fracture. The CarerQoL was not associated with the intensity of the provided informal care. However, this study shows that a considerable group of informal caregivers for elderly patients with a hip fracture experienced relational, physical and mental health problems that stemmed from providing intensive informal care during the first six months.

Project description:BackgroundDegenerative cervical myelopathy (DCM) is a common, chronic neurological condition that severely affects individuals by causing a range of disabling symptoms, frequently at a time around the peak of their careers. Subsequently, individuals with DCM often become dependent on informal care arrangements. The significant economic contribution of informal care and its burden on care providers are becoming increasingly recognized.ObjectiveThis study aimed to measure the quality of life of DCM informal caregivers and provide preliminary insight into possible contributing factors.MethodsCarers of individuals with DCM completed a Web-based survey hosted by Myelopathy.org, an international DCM charity. Carer quality of life was assessed in the form of caregiver happiness and 7 dimensions of carer burden using the Care-Related Quality of Life (CarerQol) instrument. The relationships between patient disease severity, patient pain, and carer quality of life were investigated. Differences in carer quality of life were assessed across patient and carer demographic groups, including between UK and US carers.ResultsDCM caregivers experienced substantial burden as a result of their caregiving (mean CarerQol-7D=64.1; 95% CI 58.8-69.5) and low happiness (mean CarerQol-VAS [Visual Analog Scale]=6.3; 95% CI 5.7-6.9). Burden was high and happiness was low in DCM carers when compared with a large, mixed-disease study of adult informal carers where CarerQol-7D was 79.1 and CarerQol-VAS was 7.1. No significant relationship was found between DCM carer quality of life and patient disease severity and pain scores. DCM carer quality of life appeared uniform across all patient and carer demographic groups.ConclusionsCaring for individuals with DCM is associated with reduced quality of life in the form of significant burden and reduced happiness. Reductions appear greater in DCM than in other diseases investigated. However, no simple relationship was identified between individual patient or carer factors and carer quality of life.

Dataset Information

Multiple Sclerosis Adult Day Programs and Health-Related Quality of Life of Persons with Multiple Sclerosis and Informal Caregivers.

Publications

Multiple Sclerosis Adult Day Programs and Health-Related Quality of Life of Persons with Multiple Sclerosis and Informal Caregivers.

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