scholarly journals Multiple Sclerosis: Change in Health-Related Quality of Life Over Two Years

Author(s):  
Wilma M. Hopman ◽  
Helen Coo ◽  
Andrey Pavlov ◽  
Andrew G. Day ◽  
Catherine M. Edgar ◽  
...  

Background:Cross-sectional research has demonstrated poorer function and health-related quality of life (HRQOL) in those with multiple sclerosis (MS) but less is known about change over time. The goals of this study were to measure change in HRQOL and identify factors associated with change.Methods:HRQOL was assessed at baseline and annually over two subsequent years using the Multiple Sclerosis Quality of Life Inventory. Function was assessed using the Expanded Disability Status Scale (EDSS) and the Multiple Sclerosis Functional Composite. Annualized rate of change was calculated for all twenty outcomes. Mixed effects modeling (univariate followed by multivariate) was used to examine the associations among patient characteristics and the age- and sex-adjusted Physical Component Summary (PCS) and Mental Component Summary (MCS) at study initiation and over the two years of follow-up.Results:Of 300 participants, 288 (96%) provided at least one assessment and are included in this analysis. Although 14 of the 20 outcomes showed a mean decline, only two (SF-36 physical function, p=0.018 and the EDSS, p<0.001) were statistically significant. The SF-36 social function showed a significant improvement (p=0.031). Only two variables were significantly associated with a decreased rate of decline or improvement over two years, including being female (PCS, p=0.001) and use of visiting nurse services (MCS, p<0.001).Conclusions:HRQOL is relatively stable over two years of follow-up, particularly for mentally-oriented outcomes. Further research with a longer period of follow-up is needed to provide additional insight into factors associated with change in HRQOL in patients with MS.

Author(s):  
Wilma M. Hopman ◽  
Helen Coo ◽  
Cathy M. Edgar ◽  
Evelyn V. McBride ◽  
Andrew G. Day ◽  
...  

Background:Much research has gone into the assessment of function and health-related quality of life (HRQOL) in those with multiple sclerosis (MS). The Medical Outcomes Study 36-item short form (SF-36) has been widely used in this population but current recommendations are that it be supplemented with condition-specific measures such as the MS Quality of Life Inventory (MSQLI) and the MS Functional Composite (MSFC). The goal of the baseline component of this study was the measurement of generic and condition-specific HRQOL, and the identification of factors associated with these outcomes.Methods:HRQOL was assessed at the baseline phase of a longitudinal study. Participants completed the assessment during their regularly scheduled clinic visit.Results:300 of 387 eligible patients agreed to participate, for a response rate of 77.5%. Age ranged from 22 to 77 years, while duration of MS ranged from 1 to 47 years. Mean SF-36 scores were well below age- and sex-adjusted normative data. Only 240 completed the MSFC component. Higher EDSS, use of support services, pain medications, clinical depression and antidepressant use were associated with poorer HRQOL, while higher income and education were associated with better HRQOL.Conclusions:There is a substantial burden of illness associated with MS when compared to normative HRQOL data. This was more pronounced in physically- than in mentally-oriented domains. Assessment of HRQOL provides a valuable complement to the EDSS by providing information about the patient perception of function and HRQOL beyond that which can be obtained by physical assessment alone.


2007 ◽  
Vol 13 (8) ◽  
pp. 1038-1045 ◽  
Author(s):  
K.V.L. Turpin ◽  
L.J. Carroll ◽  
J.D. Cassidy ◽  
W.J. Hader

Baseline data from a population-based study examining the health-related quality of life (HRQL) of MS patients about to begin disease modifying therapy was used to determine the factors associated with the HRQL of Saskatchewan adults with relapsing-remitting MS. Participants completed a self-report questionnaire regarding demographic and socioeconomic status, fatigue, comorbid medical conditions, disability level (EDSS), number of attacks in past 6 months, illness intrusiveness (Illness Intrusiveness Ratings Scale), depression (Beck Depression Inventory), and HRQL (SF-36 Health Status Survey). Multiple linear regression models were used to identify the factors associated with the physical and mental health summary scores of the SF-36. We found poorer physical HRQL in those who are female; older; not working; have musculoskeletal or respiratory problems; greater fatigue, higher disability scores, and more MS attacks. High illness intrusiveness; digestive system problems; genitourinary problems; and headaches were associated with poorer mental HRQL. Interestingly, we found an interaction between sex and age in mental HRQL, with worse mental health in older men but better mental health in older women. These findings may assist health care providers in identifying patients who may be at risk for decline in their HRQL, permitting appropriate and timely interventions. Multiple Sclerosis 2007; 13: 1038—1045. http://msj.sagepub.com


2017 ◽  
Vol 16 ◽  
pp. S154
Author(s):  
M. Van Horck ◽  
B. Winkens ◽  
G. Wesseling ◽  
K. de Winter-de Groot ◽  
I. De Vreede ◽  
...  

2021 ◽  
Author(s):  
Rose K Sia ◽  
Denise S Ryan ◽  
Daniel I Brooks ◽  
Janice M Kagemann ◽  
Kraig S Bower ◽  
...  

ABSTRACT Purpose The purpose of this study was to assess visual and health-related quality of life (QOL) among U.S. military service members who sustained combat ocular trauma (COT) with or without associated traumatic brain injury (TBI). Methods This was a single-center, prospective observational study of U.S. service members (n = 88) with COT who were treated at Walter Reed National Military Medical Center. Participants completed the National Eye Institute Visual Function Questionnaire (VFQ-25) at enrollment and at follow-up (&gt;1 year) and supplemental surveys: Neurobehavioral Symptom Inventory, the Medical Outcomes 36-item Short Form Survey (SF-36), and Mayo-Portland Adaptability Inventory. Results Initial and follow-up VFQ-25 showed a statistically significant increase in median scores for near activities (initial: 75.0, follow-up 83.3; P = .004) and peripheral vision (initial: 50.0, follow-up: 75.0; P = .009) and in composite scores (initial: 79.5, follow-up: 79.8; P = .022). Comparing those who did (n = 78) and did not (n = 8) have a TBI history, there were no significant differences in median change in VFQ-25 composite scores (with TBI: 2.3 vs. no TBI: 10.7; P = .179). Participants with a TBI history had a significantly lower median SF-36 General Health score (with TBI: 67.5 vs. no TBI: 92.5; P = .009) Conclusions Vision-related QOL of COT patients is generally good in the long term. However, those with both COT and a history of TBI conditions showed significantly worse functioning in several domains than those without TBI. As TBI is a common finding in COT, this association is an important factor impacting this population’s overall clinical presentation and daily functions.


PLoS ONE ◽  
2021 ◽  
Vol 16 (10) ◽  
pp. e0257981
Author(s):  
Jung-Hwa Ryu ◽  
Tai Yeon Koo ◽  
Han Ro ◽  
Jang-Hee Cho ◽  
Myung-Gyu Kim ◽  
...  

Renal functional deterioration is associated with physical and mental burdens for kidney transplant (KT) and chronic kidney disease (CKD) patients. However, the change in health-related quality of life (HRQOL) over time in KT patients compared to that of native CKD patients has not been evaluated. We addressed this issue using KT patients registered in the KNOW-KT cohort study and patients at CKD stage 1–3 registered in the KNOW-CKD cohort study. HRQOL scores were assessed using the Kidney Disease Quality of Life Short Form at baseline, 2-, and 4-years follow-up in 842 KT patients and at baseline and 5-year follow-up in 1,355 CKD patients. SF-36 scores declined at the 4-year follow-up, whereas CKD-targeted scores showed no change in the KT group. In contrast, CKD-targeted scores as well as SF-36 scores were decreased at the 5-year follow-up in CKD patients. When prognostic factors were analyzed for longitudinal HRQOL data over time, renal functions, diabetes, cardiovascular and cerebrovascular diseases, hemoglobin level, marital status, income, employment, and health care were significant prognostic factors. Furthermore, KT was an independent prognostic factor for better HRQOL. These results highlight that KT can offer a better HRQOL than that of CKD patients, even when renal function is similar.


2017 ◽  
Vol 62 (3) ◽  
pp. 357-366 ◽  
Author(s):  
M. N. Kjaer ◽  
C. B. Mortensen ◽  
P. B. Hjortrup ◽  
S. L. Rygård ◽  
I. Andersen ◽  
...  

2021 ◽  
Author(s):  
MeiXuan Lin ◽  
Liqun Huang ◽  
Danwen Zheng ◽  
Linjie Zhang ◽  
Bing Feng ◽  
...  

Abstract Background: COVID-19 is a multi-systemic disease that is highly contagious and pathogenic. The long-term consequences of it are not yet clear, as is whether society and life can return to a healthy state. Long-term assessment of their health-related quality of life (HRQoL) is essential. This study aimed to investigate HRQoL and its risk factors in COVID-19 survivors at a follow-up of 6-month. Methods: A multicenter cross-sectional survey was conducted among 192 COVID-19 patients with confirmed age ≥ 18 years who were discharged from various hospitals in Wuhan from January to April 2020. The demographic characteristics, clinical characteristics, and laboratory results of the study subjects were obtained from the hospital's medical records. Survivors' HRQoL was assessed using the Short Form 36 (SF-36), cognition was assessed using the ascertain dementia eight-item informant questionnaire (AD8), and survivors' pulmonary function were examined. All participants in this study completed the survey and testing at Hubei Provincial Hospital of Chinese and Western Medicine. SF-36 scores were compared with the Chinese norm, and logistic regression and multivariate analysis were used to investigate the factors affecting HRQoL in COVID-19 survivors. Results: SF-36 showed significant differences in HRQoL between COVID-19 survivors and the general Chinese population ( P< 0.05).Multiple linear regression demonstrated that age was negatively correlated with physical functioning (PF), role-physical limitation (RP) and social functioning (SF) ( P <0.05). Bodily pain (BP), vitality (VT), SF and role-emotional limitation (RE) were negatively correlated with females ( P <0.05). Length from discharge to follow‐up was positively correlated with PF and RP ( P <0.05). Abnormal cognitive function was negatively correlated with PF, RP, general health (GH), VT, SF, RE and mental health (MH) ( P <0.05). Abnormal Carbon Monoxide Diffusing Capacity (DLCO%<80%) was significantly negatively correlated with PF and SF ( P <0.05).In addition, there was a significant negative correlation between Coronary heart disease and RP, GH, VT and RE ( P <0.05).Logistic regression analysis demonstrated that age(OR 1.032) and AD8 scores (OR 1.203)were risk factors associated with a low physical component summary (PCS) score. Length from discharge to follow‐up (OR 0.971) was the protective factor for PCS score. Abnormal cognitive function (OR 1.543) was a significant determinant associated with a mental component summary (MCS)<50 in COVID-19 patients. Conclusions: The HRQoL of COVID-19 survivors remains to be improved at six-month follow-up. Future studies should track HRQoL in older adults, women, patients with abnormal DLCO, and abnormal cognitive function for a long time and provide them with rehabilitation advice and guidance.


1996 ◽  
Vol 7 (5) ◽  
pp. 763-773 ◽  
Author(s):  
K M Beusterien ◽  
A R Nissenson ◽  
F K Port ◽  
M Kelly ◽  
B Steinwald ◽  
...  

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.


2017 ◽  
Vol 176 (8) ◽  
pp. 1047-1054 ◽  
Author(s):  
Marieke van Horck ◽  
Bjorn Winkens ◽  
Geertjan Wesseling ◽  
Karin de Winter-de Groot ◽  
Ilja de Vreede ◽  
...  

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