Comparison of Quality of Life in Clinically Isolated Syndrome Patients Who Convert and Do Not Convert to Clinically Definite Multiple Sclerosis

2009 ◽  
Vol 11 (1) ◽  
pp. 17-24 ◽  
Author(s):  
Deborah M. Miller ◽  
Craig Kollman ◽  
Andrea Kalajian ◽  
Paul W. O'Connor ◽  
R. Philip Kinkel
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Short Form ◽  
Clinically Isolated Syndrome ◽  
Sf 36 ◽  
Initial Symptoms ◽  
Patient Reported ◽  
Definite Multiple Sclerosis ◽  
Clinically Definite Multiple Sclerosis

A secondary analysis was undertaken to compare patient-reported outcomes (PROs) of individuals who did and did not convert to clinically definite multiple sclerosis (CDMS) approximately 5 years after their first clinically isolated syndrome (CIS). Patients included in the analysis were participating in a long-term extension (called CHAMPIONS) of the Controlled High-Risk Avonex® Multiple Sclerosis Prevention Study (CHAMPS). The Multiple Sclerosis Quality of Life Inventory (MSQLI), a battery including the Short Form Health Status Survey (SF-36) and nine disease-specific scales, was administered to participants 5 years after their initial symptoms suggestive of MS (randomization into the CHAMPS study). Of 203 CHAMPIONS patients, 188 (93%) completed the MSQLI at enrollment into this extension study. Of these, 79 (42%) converted to CDMS. Statistically significant differences (P < .001) between those who did and did not convert to CDMS were found for 4 of the 11 MSQLI scales: the SF-36 Physical Component Summary, the Modified Fatigue Impact Scale, the Pain Effects Scale, and the Bladder Control Scale. Trends not meeting our criteria for statistical significance (P > .001 but < .01) were observed for the SF-36 Mental Component Summary, the Perceived Deficits Questionnaire, and the Mental Health Inventory. SF-36 scores for patients not converting to CDMS over 5 years were similar to those reported for age-matched normal controls. No other demographic or disease-related factors were associated with these PROs. When stratified by Expanded Disability Status Scale score, patients who converted to CDMS demonstrated statistically significant differences on the same four scales defined above that differentiated those who did and did not convert to CDMS. These data show that individuals who have CDMS but limited disability demonstrate clear evidence of diminished health-related quality of life.

scholarly journals Disease-Related Determinants of Quality of Life 10 Years After Clinically Isolated Syndrome

2015 ◽  
Vol 17 (1) ◽  
pp. 26-34 ◽  
Author(s):  
R. Philip Kinkel ◽  
Genevieve Laforet ◽  
Xiaojun You
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Physical Component Summary ◽  
Short Form ◽  
Clinically Isolated Syndrome ◽  
Clinical Event ◽  
Sf 36 ◽  
Patient Reported ◽  
Edss Score

Background: The main clinical determinants of quality of life (QOL) 5 years after clinically isolated syndrome (CIS) are Expanded Disability Status Scale (EDSS) score and conversion to clinically definite multiple sclerosis (CDMS). The aim of this study was to determine the demographic, clinical, and magnetic resonance imaging (MRI) factors associated with QOL 10 years after CIS. Methods: Controlled High Risk Avonex® Multiple Sclerosis Prevention Study in Ongoing Neurologic Surveillance (CHAMPIONS) 10-year patients were assessed for CDMS, EDSS score, MRI T2 activity, brain parenchymal fraction, and patient-reported QOL. Associations were evaluated using analysis of variance models. Results: A second clinical event consistent with CDMS and higher EDSS scores at years 5 and 10 were associated with lower 36-item Short Form Health Status Survey (SF-36) Physical Component Summary scores at year 10 (P < .01). Patients with earlier onset of CDMS had worse patient-reported Physical Component Summary, SF-36 Mental Component Summary, fatigue, and pain scores at year 10 than patients with later or no onset of CDMS. Neither initial randomization group nor any MRI metrics assessed at baseline or during follow-up were associated with QOL at 10 years. Conclusions: These results support the development of therapies for patients with CIS that significantly reduce the risk of conversion to CDMS and the progression of physical disability to milestones as low as EDSS scores of 2.0.

Validity of the PROMIS-29 in a large Australian cohort of patients with systemic sclerosis

2017 ◽  
Vol 2 (3) ◽  
pp. 188-195 ◽  
Author(s):  
Kathleen Morrisroe ◽  
Wendy Stevens ◽  
Molla Huq ◽  
Joanne Sahhar ◽  
Gene-Siew Ngian ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Sclerosis ◽  
Construct Validity ◽  
Short Form ◽  
Good Alternative ◽  
Measurement Information ◽  
Internal Reliability ◽  
Sf 36 ◽  
Patient Reported

Background We aimed to evaluate the construct validity of the Patient-Reported Outcomes Measurement Information System 29 (PROMIS-29) in Australian systemic sclerosis (SSc) patients. Methods SSc patients, identified through the Australian Scleroderma Cohort Study database, completed two quality-of-life instruments concurrently, the PROMIS-29 and the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36). The construct validity of the PROMIS-29 was assessed by the correlations between the PROMIS-29 and the SF-36 and Health Assessment Questionnaire Disability Index (HAQ-DI). Cronbach's alpha was used to test the internal reliability of all instruments in Australian SSc patients and non-parametric correlation, including Spearman's correlation, was used to test the construct validity of PROMIS-29 against the SF-36 and HAQ-DI. Results A total of 477 completed questionnaires were returned, equating to a response rate of 59.6%. The mean (±SD) age of respondents at the time of the survey was 64.1 (±11.1) years. They were predominantly female (87.4%), with limited disease subtype (lcSSc) (77.8%) and long disease duration from onset of first non-Raynaud's phenomenon symptom at the time of survey (10.9 ± 11.1 years). For the correlation analysis between the PROMIS-29 and the legacy instruments, all Spearman correlation coefficients were in the logical direction and highly significant suggesting that the PROMIS-29 is a good alternative to other validated measures of disease burden. Conclusions Our study indicates that the PROMIS-29 questionnaire is a valid instrument for measuring health-related quality of life in Australian females with lcSSc of long duration.

Patient characteristics and determinants of quality of life in an international population with multiple sclerosis: Assessment using the MusiQoL and SF-36 questionnaires

2011 ◽  
Vol 17 (10) ◽  
pp. 1238-1249 ◽  
Author(s):  
Oscar Fernández ◽  
Karine Baumstarck-Barrau ◽  
Marie-Claude Simeoni ◽  
Pascal Auquier ◽  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Short Form ◽  
Occupational Status ◽  
Mental Component Summary Score ◽  
International Study ◽  
Summary Score ◽  
Sf 36 ◽  
Edss Score

Background: Multiple sclerosis (MS) can have psychological and socioeconomic consequences that affect patients’ health-related quality of life (HRQoL) as much as physical disability. Objective: To determine the clinical and sociodemographic factors affecting HRQoL in a large international study using the MS International QoL (MusiQoL) questionnaire. Methods: Patients aged >18 years with a diagnosis of MS for >6 months or clinically isolated syndrome (CIS) were enrolled. Sociodemographic and clinical data were recorded, and patients completed the MusiQoL and 36-item short form (SF-36) health survey questionnaires. Results: In total, 1992 patients from 15 countries were enrolled (mean [standard deviation] age: 42.3 [12.5] years; 70.5% women; 70.4% with relapsing–remitting MS). Multivariate multiple regression analyses identified lower educational level, higher Expanded Disability Status Scale (EDSS) score, cognitive impairment, being single and shorter time since last relapse as significant predictors of lower MusiQoL global index scores ( p < 0.05). Older age, female sex, higher EDSS score, shorter time since last relapse and receiving current MS treatment were significant predictors of lower SF-36 physical component summary scores ( p < 0.05). The SF-36 mental component summary score was linked to occupational status, inpatient/outpatient status, time since last relapse, and whether the patient was receiving MS treatment ( p < 0.05). Conclusion: Sociodemographic and clinical factors are linked to HRQoL in patients with MS. Interventions that affect these factors might be expected to influence HRQoL.

Validation of the Multiple Sclerosis International Quality of Life questionnaire

2007 ◽  
Vol 14 (2) ◽  
pp. 219-230 ◽  
Author(s):  
MC Simeoni ◽  
P. Auquier ◽  
O. Fernandez ◽  
P. Flachenecker ◽  
S. Stecchi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Internal Consistency ◽  
Discriminant Validity ◽  
Short Form ◽  
Life Questionnaire ◽  
Validity And Reliability ◽  
Sf 36 ◽  
Quality Of Life Scale

This study aims to validate the Multiple Sclerosis (MS) International Quality of Life (MusiQoL) questionnaire, a multi-dimensional, self-administered questionnaire, available in 14 languages, as a disease-specific quality of life scale that can be applied internationally. A total of 1992 patients with different types and severities of MS from 15 countries were recruited. At baseline and day 21 ± 7, each patient completed the MusiQoL, a symptom checklist and the short-form (SF)-36 QoL questionnaire. Neurologists also collected socio-demographic, MS history and outcome data. The database was randomly divided into two subgroups and analysed according to different patient characteristics. For each model, psychometric properties were tested and the number of items was reduced by various statistical methods. Construct validity, internal consistency, reproducibility and external consistency were also tested. Nine dimensions, explaining 71% of the total variance, were isolated. Internal consistency and reproducibility were satisfactory for all the dimensions. External validity testing revealed that dimension scores correlated significantly with all SF-36 scores, but showed discriminant validity by gender, socio-economic and health status. Significant correlations were found between activity in daily life scores and clinical indices. These results demonstrate the validity and reliability of the MusiQoL as an international scale to evaluate QoL in patients with MS. Multiple Sclerosis 2008; 14: 219—230. http://msj.sagepub.com

scholarly journals Postoperative Assessment of the Quality of Life in Patients with Colorectal Endometriosis

2021 ◽  
Vol 10 (21) ◽  
pp. 5211
Author(s):  
Claudia Mehedintu ◽  
Francesca Frincu ◽  
Lacramioara Aurelia Brinduse ◽  
Andreea Carp-Veliscu ◽  
Elvira Bratila ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Bodily Pain ◽  
Validity And Reliability ◽  
Good Reliability ◽  
Colorectal Endometriosis ◽  
Sf 36 ◽  
Patient Reported ◽  
Role Limitation

Morbidity and mortality alone are not comprehensive measures of evaluating the benefits of surgical interventions in endometriosis patients, thus, subjective patient-reported instruments are required. The 36-tem Short Form Survey (SF-36) is a Health-Related Quality of Life (HRQoL) instrument that has not been validated yet for women with endometriosis. The aims of this study are to evaluate the validity and reliability of the SF-36 in patients with colorectal endometriosis and to compare the HRQoL before and after surgery, using different Quality of Life (QoL) instruments: the Gastrointestinal QoL Index (GIQLI) and Knowles–Eccersley–Scott Symptom Questionnaire (KESS). We conducted a retrospective study using prospectively recorded data in the North-West Inter-Regional Female Cohort for Patients with Endometriosis (CIRENDO) database. The assessment was performed on four hundred and eighty-eight patients before and 12 months after the surgery. Preoperative and postoperative item-internal consistency and Cronbach’s α proved evidence for good reliability showing that SF-36 is a useful instrument for endometriosis patients’ QoL. The domains of Role (limitation) physical, Bodily pain and Role (limitation) emotional showed the most remarkable improvements (difference before vs. one year after surgery) with p < 0.001. Our data show that SF-36 has validity and reliability and can be used in patients with endometriosis. Surgery improved the QoL and digestive function.

Functional and Quality of Life Outcomes of Surgery for Degenerative Cervical Myelopathy: a Quality Improvement Study

2020 ◽  
Author(s):  
Babak Mirzashahi ◽  
Pejman Mansouri ◽  
Arvin Najafi ◽  
Saeed Besharati ◽  
Mohammad Taha Kouchakinejad ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cervical Myelopathy ◽  
Short Form ◽  
Sf 36 ◽  
Patient Reported ◽  
Vas Scores ◽  
One Year ◽  
Degenerative Cervical Myelopathy

Background: This study aimed to determine the outcome of surgical treatments in patients with degenerative cervical myelopathy (DCM). During one-year follow-up period, we evaluated patient-reported functional and quality of life (QOL) measures.   Methods: In a retrospective single-center study, we collected data of patients with DCM who underwent cervical fusion surgeries in Imam Khomeini Hospital, Tehran, Iran, from 2011 to 2015. Patients underwent single or multi-level anterior cervical discectomy and fusion (ACDF), anterior cervical corpectomy and fusion (ACCF), or posterior laminectomy and fusion. We utilized patient-reported assessments including Short Form 36 (SF-36), Visual Analogue Scale (VAS), Neck Disability Index (NDI), and Nurick grade. Follow-up was performed at 6 weeks, 3 months, 6 months, and 12 months post-operatively to assess the outcome of surgery.   Results: Ninety patients (56 men, 34 women) with a mean age of 54.1 (27-87) years were included. Comparison of pre- and post-operative scores showed significant improvement in SF-36 parameters, VAS, NDI, and Nurick grade (P < 0.001). Also, women’s VAS scores improved more than men's VAS scores during the follow-up period (P < 0.050). Age and type of surgery did not significantly affect the SF-36 parameters, VAS, NDI, and Nurick grade (P > 0.05).   Conclusions: Cervical surgeries in patients with different severity of DCM can improve different aspects of QOL during one-year after surgery

scholarly journals Treatment with Interferon Beta-1b Improves Quality of Life in Multiple Sclerosis

1999 ◽  
Vol 26 (4) ◽  
pp. 276-282 ◽  
Author(s):  
G.P. Rice ◽  
J. Oger ◽  
P. Duquette ◽  
G.S. Francis ◽  
M. Bélanger ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Interferon Beta ◽  
Burden Of Illness ◽  
Short Form ◽  
Sf 36 ◽  
Disability Status ◽  
Illness Study ◽  
Historical Controls

Background:The Canadian Burden of Illness Study Group reported that the quality of life (QoL) of multiple sclerosis (MS) patients falls drastically, early in the disease. With disability progression, the physical functioning scales of the Short Form 36 (SF-36) showed further decreases in QoL. The objective of this study is to describe the QoL of MS patients treated with interferon beta-1b (IFNB-1b) and to compare it to the QoL observed in a group of patients who had not been treated with IFNB-1b.Methods:Treated patients were prospectively recruited and were seen at their regular visit to the MS clinic. They self-completed the SF-36 questionnaire and their QoL was described and retrospectively compared to that of historical controls.Results:When IFNB-1b treated patients were compared to historical control patients with the same relapsing forms of MS, the treated patients with an Expanded Disability Status Scale (EDSS) score lower than 3.0 had a significantly better QoL. This was significant for four of the eight SF-36 domains: Physical Function (+22%, p=0.0102), Role-Physical (+100%, p=0.0022), General Health (+27%, p=0.0070) and Social Function (+19%, p=0.0287). The average QoL difference was 8% in the EDSS 3.0-6.0 group and 10% in the EDSS >6 group.Conclusion:Patients with relapsing forms of MS treated with IFNB-1b have better QoL than patients who are not treated, especially those with an EDSS < 3.0.

Quality of Life and Disability in Patients with Treatment-Failure Gout

2009 ◽  
Vol 36 (5) ◽  
pp. 1041-1048 ◽  
Author(s):  
MICHAEL A. BECKER ◽  
H. RALPH SCHUMACHER ◽  
KATY L. BENJAMIN ◽  
PETER GOREVIC ◽  
MARIA GREENWALD ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Treatment Failure ◽  
Patient Reported Outcomes ◽  
Short Form ◽  
Clinical Status ◽  
Damage Index ◽  
Sf 36 ◽  
Patient Reported ◽  
Gout Flares

Objective.The relationship between self-reported quality of life and disability and disease severity was evaluated in subjects with treatment-failure gout (n = 110) in a prospective, 52-week, observational study.Methods.Subjects had symptomatic crystal-proven gout of at least 2 years’ duration and intolerance or refractoriness to conventional urate-lowering therapy. Serum uric acid (sUA) concentration, swollen and tender joint counts, frequency and severity of gout flares, tophus assessments, comorbidities, and patient-reported outcomes data [Medical Outcomes Study Short Form-36 (SF-36), Health Assessment Questionnaire-Damage Index] were collected. Analyses included correlations of patient-reported outcomes with clinical variables and changes in clinical status.Results.Mean age of study subjects was 59 years. Mean scores on SF-36 physical functioning subscales were 34.2–46.8, analogous to persons aged ≥ 75 years in the general population. Subjects with more severe gout at baseline had worse health-related quality of life (HRQOL) in all areas (p < 0.02 for all measures), compared to patients with mild-moderate disease. Number of flares reported in past year, number of tender joints, swollen joints, and tophi correlated significantly with some or all HRQOL and disability measures. sUA was not significantly correlated with any HRQOL or disability measure. Subjects with comorbidities experienced worse physical, but not mental, functioning.Conclusion.Severe gout is associated with poor HRQOL and disability, especially for patients who experience more gout flares and have a greater number of involved joints. Subject perceptions of gout-related functioning and pain severity appear to be highly sensitive indicators of HRQOL and disability.

scholarly journals The impact of ocrelizumab on health-related quality of life in individuals with multiple sclerosis

2021 ◽  
Vol 7 (2) ◽  
pp. 205521732110075
Author(s):  
Bonnie I Glanz ◽  
Jonathan Zurawski ◽  
Emily C Casady ◽  
Rebecca Shamah ◽  
Mira Weiner ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Clinical Characteristics ◽  
Health Related Quality ◽  
Sf 36 ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Background Ocrelizumab is approved for the treatment of both relapsing and progressive multiple sclerosis (MS). Objective To examine the impact of ocrelizumab on health-related quality of life (HRQOL) in individuals with MS. Methods Ninety-eight individuals with relapsing and 32 with progressive MS were enrolled. Participants were administered a battery of patient-reported outcome (PRO) measures at their first ocrelizumab infusion, and infusions at 6 and 12 months. PRO measures included the Medical Outcomes Study SF-36 and Neuro-QoL. Results At baseline, participants had low mean scores across HRQOL domains. After 12 months, increases were observed on SF-36 Role-Physical, General Health, Vitality, Role-Emotional, Mental health and Mental Component Summary. On Neuro-QoL, improvements were seen in Positive Affect, Anxiety, Emotional and Behavioral Dyscontrol and Fatigue. Several demographic and clinical characteristics were associated with HRQOL at baseline. The strongest associations were between physical HRQOL measures and measures of MS disability. Associations between the longitudinal change in HRQOL scores and baseline demographic and clinical characteristics were mild. Conclusions We observed significant improvements across multiple mental HRQOL domains at 12 months in individuals treated with ocrelizumab. These findings support the use of HRQOL measures to provide a subjective measure of treatment impact that complements traditional outcomes.

scholarly journals How Comprehensive and Efficient Are Patient-Reported Outcomes for Rotator Cuff Tears?

2017 ◽  
Vol 5 (3) ◽  
pp. 232596711769322 ◽  
Author(s):  
Eric C. Makhni ◽  
Jason T. Hamamoto ◽  
John D. Higgins ◽  
Taylor Patterson ◽  
Justin W. Griffin ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Life Satisfaction ◽  
Rotator Cuff ◽  
Patient Reported Outcomes ◽  
Short Form ◽  
Rotator Cuff Tears ◽  
Sf 36 ◽  
Patient Reported ◽  
Functional Components

Background: Increasing emphasis is placed on patient-reported outcomes (PROs) after common orthopaedic procedures as a measure of quality. When considering PRO utilization in patients with rotator cuff tears, several different PROs exist with varying levels of accuracy and utilization. Hypothesis/Purpose: Understanding which disease-specific PRO may be most efficiently administered in patients after rotator cuff repair may assist in promoting increased patient and physician adoption of these useful scores. Using a novel assessment criterion, this study assessed all commonly used rotator cuff PROs. We hypothesize that surveys with fewer numbers of questions may remain comparable (with regard to comprehensiveness) to longer surveys. Study Design: Systematic review. Methods: Commonly utilized rotator cuff PROs were analyzed with regard to number of survey components, comprehensiveness, and efficiency. Comprehensiveness (maximum score, 11) was scored as the total number of pain (at rest/baseline, night/sleep, activities of daily living [ADLs], sport, and work) and functional (strength, motion/stiffness, and ability to perform ADLs, sport, and work) metrics included, along with inclusion of quality of life/satisfaction metrics. Efficiency was calculated as comprehensiveness divided by the number of survey components. Results: Sixteen different PROs were studied. Number of components ranged from 5 (University of California at Los Angeles score [UCLA]) to 36 (Short Form–36 [SF-36], Japanese Orthopaedic Association score [JOA]). The Quality of Life Outcome Measure for Rotator Cuff Disease (RC-QoL) included all 5 pain components, while 7 PROs contained all 5 functional components. Ten PROs included a quality of life/satisfaction component. The most comprehensive scores were the RC-QoL (score, 11) and Penn (score, 10), and the least comprehensive score was the Marx (score, 3). The most efficient PROs were the UCLA, the Quick Disabilities of the Arm, Shoulder, and Hand score (QuickDASH), and Constant scores. The least efficient scores were the JOA and SF-36 scores. Conclusion: Many commonly utilized PROs for rotator cuff tears are lacking in comprehensiveness and efficiency. Continued critical assessment of PRO quality may help practitioners identify the most comprehensive and efficient PRO to incorporate into daily clinical practice.

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