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

2020 ◽  
Vol 22 (4) ◽  
pp. 187-192
Author(s):  
Joseph M. Gasper ◽  
Megan Lewis ◽  
Anne Kroeger ◽  
Ben Muz ◽  
Nicholas LaRocca ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Informal Caregivers ◽  
Well Being ◽  
Care Utilization ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Mental Hrqol

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.

scholarly journals Health-Related Quality of Life of Patients with Multiple Sclerosis in Oman – A CrossSectional Study

2021 ◽  
Author(s):  
Jansirani Natarajan ◽  
Mickael Antoine Joseph ◽  
Abdullah Al Asmi ◽  
Gerald Amandu Matua ◽  
Jaber Al Khabouri ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Disease Process ◽  
Well Being ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact ◽  
Disease Specific

Objectives: Multiple sclerosis is a disabling neurological disorder with significant negative effects on patients’ quality of life. Despite the increased prevalence of multiple sclerosis in Arabian Gulf countries in recent years, no study has assessed the impact of multiple sclerosis on the healthrelated quality of life of Omani patients. Therefore, the objectives of the current study was to assess the impact of multiple sclerosis on the health-related quality of life of Omani patients using the validated disease-specific self-administered MusiQoL instrument. Methods: A cross-sectional descriptive study was carried out between April and December 2019 on 177 Omani patients with multiple sclerosis attending two major hospitals in Oman. Patients’ health-related quality of life was assessed using the validated disease-specific self-administered MusiQoL instrument. Results: Majority (51.4%) of the patients had poor HRQOL and 48.6% had moderate HRQOL. We found that being older than 30 years, a female, married, separated, widowed, or divorced, and having visual and sleep problems had poorer health-related quality of life. Among the different health-related quality of life components, relationship with the healthcare system and relationship with family and friends were the most affected because of the disease process. Our results also showed that psychological well-being and coping domains of MusiQoL questionnaires are significantly reduced in females as compared to males. Conclusion: Understanding the health-related quality of life of Omanis with multiple sclerosis provides valuable knowledge that could help optimize the management of this disease.

Can Aerobic Exercise Training Affect Health-Related Quality of Life for People with Multiple Sclerosis?

2001 ◽  
Vol 23 (2) ◽  
pp. 122-135 ◽  
Author(s):  
Georgina Sutherland ◽  
Mark B. Andersen ◽  
Mark A. Stoové
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Bodily Pain ◽  
Well Being ◽  
Exercise Group ◽  
Control Group ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Individuals with multiple sclerosis (MS) are often advised not to participate in vigorous exercise. Leading a relatively sedentary life, however, may exacerbate the debilitating effects of MS. In this study, 22 people participated in either a no-special-activity group (n = 11) or an experimental group (n = 11) that involved water aerobics three times a week for 10 weeks. Measures taken included scales for health-related quality of life (HRQOL) and psychological well-being. ANCOVAs using social support and the appropriate pretest scores as covariates revealed that after the intervention, the exercise group had more energy and vigor (extremely large effect sizes). Other very large effects were found in the exercise group, which had better social and sexual functioning and less bodily pain and fatigue than the control group. Future research should involve long-term studies to determine whether exercise not only improves quality of life but also helps slow the progression of disease.

scholarly journals Longitudinal association between physical activity and health-related quality of life among community-dwelling older adults: a longitudinal study of Urban Health Centres Europe (UHCE)

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Xuxi Zhang ◽  
Siok Swan Tan ◽  
Carmen Betsy Franse ◽  
Tamara Alhambra-Borrás ◽  
Arpana Verma ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Low Frequency ◽  
Health Related Quality ◽  
Longitudinal Association ◽  
Related Quality ◽  
Health Related ◽  
Mental Hrqol

Abstract Background Physical activity (PA) may play a key role in healthy aging and thus in promoting health-related quality of life (HRQoL). However, longitudinal studies on the association between PA and HRQoL are still scarce and have shown inconsistent results. In this study, we aimed to examine the longitudinal association between frequency of moderate PA and physical and mental HRQoL. Secondly, to assess the association between a 12-month change in frequency of moderate PA and HRQoL. Methods A 12-month longitudinal study was conducted in Spain, Greece, Croatia, the Netherlands, and the United Kingdom with 1614 participants (61.0% female; mean age = 79.8; SD = 5.2) included in the analyses. Two categories of the self-reported frequency of moderate PA including 1) ‘regular frequency’ and 2) ‘low frequency’ were classified, and four categories of the change in frequency of moderate PA between baseline and follow-up including 1) ‘continued regular frequency’, 2) ‘decreased frequency’, 3) ‘continued low frequency’ and 4) ‘increased frequency’ were identified. Physical and mental HRQoL were assessed by the 12-Item Short-Form Health Survey (SF-12). Results The frequency of moderate PA at baseline was positively associated with HRQoL at follow-up. Participants with a continued regular frequency had the highest HRQoL at baseline and follow-up. Participants who increased the frequency of moderate PA from low to regular had better physical and mental HRQoL at follow-up than themselves at baseline. After controlling for baseline HRQoL and covariates, compared with participants who continued a regular frequency, participants who decreased their frequency had significantly lower physical (B = -4.42; P < .001) and mental (B = -3.95; P < .001) HRQoL at follow-up; participants who continued a low frequency also had significantly lower physical (B = -5.45; P < .001) and mental (B = -4.10; P < .001) HRQoL at follow-up. The follow-up HRQoL of participants who increased their frequency was similar to those who continued a regular frequency. Conclusions Maintaining or increasing to a regular frequency of PA are associated with maintaining or improving physical and mental HRQoL. Our findings support the development of health promotion and long-term care strategies to encourage older adults to maintain a regular frequency of PA to promote their HRQoL.

scholarly journals Influence of malocclusion on oral health-related quality of life in children: a seven-year cohort study

2021 ◽  
Vol 26 (2) ◽  
Author(s):  
Jocelito TONDOLO JUNIOR ◽  
Jessica Klöckner KNORST ◽  
Gabriele Rissotto MENEGAZZO ◽  
Bruno EMMANUELLI ◽  
Thiago Machado ARDENGHI
Keyword(s):  
Quality Of Life ◽  
Early Childhood ◽  
Cohort Study ◽  
Oral Health ◽  
Well Being ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

ABSTRACT Objective: To assess the influence of early childhood malocclusion on oral health-related quality of life (OHRQoL). Methods: 7-year cohort study involving 639 preschoolers (1 to 5 years) who had been evaluated initially with a survey conduced in 2010. Children completed the Brazilian version of the Child Perception Questionnaire (CPQ8-10) to assess OHRQoL during the follow-up period. Exploratory variables were collected at baseline, including the presence and severity of malocclusion (overjet and lip coverage). Socioeconomic characteristics, oral health behavior, and patterns of dental attendance were also investigated. A multilevel Poisson regression model was used to fit the association between malocclusion and OHRQoL. With this approach, incidence rate ratio (IRR) and 95% confidence intervals (95% CI) were calculated. Results: A total of 449 children were re-evaluated (follow-up rate, 70.3%). The prevalence of accentuated overjet and inadequate lip coverage was 13.5% and 11.9%, respectively. The mean (±SD) CPQ8-10 score was 10.57±10.32. The presence of inadequate lip coverage was associated with higher overall mean CPQ8-10 scores (IRR 1.51; 95% CI 1.29-1.77), and social well-being, emotional well-being, and functional limitation domains. Children with accentuated overjet (>3mm) also demonstrated higher overall scores on the CPQ8-10 than their normal counterparts. The presence of this condition also influenced the oral symptom (IRR 1.29; 95% CI 1.08-1.53) and emotional well-being (IRR 1.30; 95% CI 1.02-1.66) domains. Conclusion: Results of the present study suggest that early childhood malocclusion is a risk factor for low OHRQoL in future.

scholarly journals The effects of recombinant human erythropoietin on functional health and well-being in chronic dialysis patients.

1996 ◽  
Vol 7 (5) ◽  
pp. 763-773 ◽  
Author(s):  
K M Beusterien ◽  
A R Nissenson ◽  
F K Port ◽  
M Kelly ◽  
B Steinwald ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Health Related Quality ◽  
Dialysis Patients ◽  
Human Erythropoietin ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related

As a component of the open-label, multicenter National Cooperative Recombinant Human Erythropoietin (Epo) Study, the health-related quality-of-life effects of Epo therapy were assessed in 484 dialysis patients who had not previously been treated with Epo therapy (New-to-Epo) and 520 dialysis patients who were already receiving Epo therapy at the time of study enrollment (Old-to-Epo). Using scales from the Medical Outcomes Study 36-item Short Form Health Survey (SF-36), health-related quality of life was assessed on study enrollment (baseline) and at an average of 99 days follow-up. At baseline, SF-36 scores for Old- and New-to-Epo patients were well below those observed in the general population, reflecting substantial impairments in functional status and well-being among patients with chronic renal failure. Significant improvements from baseline to follow-up were observed among New-to-Epo patients in vitality, physical functioning, social functioning, mental health, looking after the home, social life, hobbies, and satisfaction with sexual activity (P < 0.05 for each). The mean improvements in hematocrit values among New-to-Epo and Old-to Epo patients were 4.6 and 0.3, respectively. At the time of follow-up, SF-36 scores for New-to-Epo patients were comparable with those observed among Old-to-Epo patients, whose scores did not change significantly from baseline to follow-up. Analysis of the relationship between Epo therapy, hematocrit values, and health-related quality of life suggest that some of the beneficial quality-of-life effects of Epo are mediated through a change in hematocrit level.

scholarly journals Assessment of Activity Pacing in Relation to Physical Activity and Health-Related Quality of Life in Adults with Multiple Sclerosis: A Foundation for Further Intervention Development

2021 ◽  
Author(s):  
Ulric S. Abonie ◽  
Bregje L. Seves ◽  
Femke Hoekstra ◽  
Trynke Hoekstra ◽  
Lucas H.V. van der Woude ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Multiple Sclerosis ◽  
Intervention Development ◽  
Well Being ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Over Time

Abstract Background: Activity pacing is a behavioral strategy for coping with fatigue, optimizing physical activity (PA) levels, and achieving a paced approach to lifestyle and sustainable self-regulated exercise practice to optimize health and well-being. Yet little is known about how activity pacing affects PA and health-related quality of life (HRQOL) while controlling for fatigue and demographic characteristics over time in adults with multiple sclerosis (MS). This study examined the natural use of activity pacing and how it is associated with PA and HRQOL over time in adults with MS. Methods: Sixty-eight adults with MS (mean ± SD age, 45.2 ± 10.9 years) completed questionnaires on their activity pacing, fatigue, PA, and HRQOL 14, 33, and 52 weeks after rehabilitation. Associations between the variables were examined using multilevel models. Results: No associations were found between activity pacing and PA (β = −0.01, P = .89) or between activity pacing and HRQOL (β = −0.15, P = .09). Conclusions: This study provides an initial understanding of how activity pacing relates to PA and HRQOL in people with MS over time and indicates that there is no clear strategy among adults with MS that is successful in improving PA and HRQOL in the short- or long-term. Persons with MS may benefit from goal-directed activity pacing interventions to improve longitudinal engagement in PA, and the present study provides a foundation for further intervention development.

scholarly journals The impact of demographic and clinical characteristics on the trajectories of health-related quality of life among patients with Fabry disease

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Solrun Sigurdardottir ◽  
Birgitte Bjerkely ◽  
Trond G. Jenssen ◽  
Per Mathisen ◽  
Charlotte von der Lippe ◽  
...  
Keyword(s):  
Medical Complications ◽  
Health Related Quality ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
Mental Hrqol ◽  
Male Sex ◽  
Lower Hrqol

Abstract Background Fabry disease (FD) is an X-linked lysosomal storage disorder characterized by multiorgan dysfunction. Since individuals with FD usually experience progressive clinical disease manifestations, their health-related quality of life (HRQOL) is expected to change over time. However, there is limited longitudinal research examining HRQOL outcomes in individuals with FD. We aimed to: assess longitudinal outcomes in HRQOL in adults with FD; examine the physical- and mental HRQOL trajectories at the initial registration (baseline), 3–5 year, and 7–13 year follow-ups; and evaluate the possible associations of age, sex and medical complications with the physical- and mental HRQOL trajectories. Methods Forty-three individuals with FD (53% female) who were aged 18 to 81 years at baseline attended clinical follow-up visits between 2006 and 2020. Medical records were extracted retrospectively. Demographics and the 36-item Short-Form Health Survey (SF-36) were recorded at scheduled visits, except for the last data collection which was prospectively obtained in 2020. The physical (PCS) and mental (MCS) composite scores (SF-36) were chosen as outcome measures. Results The eight SF-36 domain scores were stable over a span of 13 years, and only physical- and social functioning domains worsened clinically over this follow-up period. Mean baseline SF-36 domain scores were all significantly lower (decreased HRQOL) in the FD sample compared with Norwegian population norms. Two hierarchical linear models were run to examine whether demographics and medical complications (measured at the last clinical visit) predicted physical and mental HRQOL trajectories. Age above 47 years (p < 0.001), male sex (p = 0.027), small fibre neuropathy (p < 0.001), renal dysfunction (p < 0.001), and cerebrovascular events (p = 0.003) were associated with lower HRQOL over time. No significant interactions were found between the time of follow up and the abovementioned predictors of HRQOL. Conclusions Overall HRQOL trajectories remained stable between baseline, 3–5 year, and 7–13 year follow-ups, with the majority of individuals reporting decreased physical and mental HRQOL. Medical complications in combination with older age and male sex are important predictors of lower HRQOL in FD. Awareness of this relationship is valuable both for health care providers and for patients. The findings provide indicators that can guide treatment decisions to improve physical and mental HRQOL outcomes.

scholarly journals Pain, Health-Related Quality of Life and Health Care Utilization after Inpatient Surgery: A Pilot Study

2006 ◽  
Vol 11 (1) ◽  
pp. 41-47 ◽  
Author(s):  
Elizabeth G VanDenKerkhof ◽  
Wilma M Hopman ◽  
Tanveer Towheed ◽  
Rosemary Wilson ◽  
John Murdoch ◽  
...  
Keyword(s):  
Care Utilization ◽  
Management Service ◽  
Health Related Quality ◽  
Acute Pain Management ◽  
Web Based ◽  
Related Quality ◽  
Health Related ◽  
Health Questionnaires

BACKGROUND: Little is known about pain-related outcomes in surgical inpatients after discharge from the hospital. An ongoing risk and outcomes monitoring system would provide valuable feedback to improve the quality of patient care.OBJECTIVES: The purpose of the present pilot study was to describe postoperative pain, medication use, health care utilization and health-related quality of life (HRQOL) immediately and four weeks after surgery; merge clinically captured data with Web-based follow-up data; and examine patients’ willingness to complete Web-based health questionnaires.METHODS: One hundred two consecutive surgical inpatients were approached for participation. Perioperative data were abstracted from the acute pain management service clinical database and linked to follow-up data captured four weeks postoperatively.RESULTS: Follow-up questionnaires were completed by 88 participants. Clinical assessment data were successfully linked to Web-based follow-up data. Average pain intensity (3.7) four weeks following discharge fell just short of the acute pain management service active pain score of 3.9. At four weeks, all 88 participants reported significantly impaired HRQOL, 36 were still taking pain medications and 15 had visited an emergency room. Two-thirds of the participants had access to the Internet at home and approximately one-half were willing to complete on-line health questionnaires.DISCUSSION: The study indicates that it is feasible to link clinical and research data, and shows a significant burden of pain and reduced HRQOL in the weeks following discharge. This approach to converting clinically captured data into meaningful information about surgical outcomes is valuable in the development of an ongoing risk and outcomes monitoring system.

Quality of life related to the health and socio-economic resources of the elderly

2017 ◽  
Vol 41 (S1) ◽  
pp. S694-S695
Author(s):  
F. Daniel ◽  
A. Ferreira ◽  
H. Espírito-Santo ◽  
R. Monteiro ◽  
I. Massano-Cardoso ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Statistical Significance ◽  
Well Being ◽  
The Elderly ◽  
Health Related Quality ◽  
Long Term Conditions ◽  
Related Quality ◽  
Health Related

IntroductionAging is a very heterogeneous and dissimilar process, full of asymmetries. There is evidence that socio-economic differences determine disadvantages and inequalities in old ages. Older people face particular inequalities in healthiness especially with more complex and vulnerable long-term conditions, being more likely to need support from social care services.AimTo evaluate the quality of life (well-being) related to the health of the elderly according to socio-economic indicators.MethodCross-sectional quantitative study was performed. A total of 316 elderly people (M = 74.78; SD = 9.78 years of age) was interviewed with the Portuguese version of the EQ-5D-3L scale for health-related quality of life.ResultsThe interaction between income and the type of residential follow-up (alone vs. accompanied) was not statistically significant [F (2.310) = .910, P < .407; Ƞp2 = .006]. Differences in health status index were statistically significant for income [F (2.310) = 5.518, P < .004; Ƞp2 = .034]. Post-hoc comparisons indicated that the mean score for those with insufficient income for their expenses (M = .39, SD = .27) was significantly different from those with income reaching their expenses (M = .50, SD = .25) as well as those with income covering their expenses sufficiently (M = .60, SD = .21). The main effect for the type of follow-up (alone vs. accompanied) did not reach statistical significance [F (2.310) = .224, P < .636, Ƞp2 = .672].ConclusionsIncome has an impact on health-related quality of life. Health in aging as a social phenomenon is not neutral to economic differences and is exposed to these structural disadvantages.Disclosure of interestThe authors have not supplied their declaration of competing interest.

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