521 Prevalence and Impact of Restless Legs in Patients with Myasthenia Gravis

SLEEP ◽  
2021 ◽  
Vol 44 (Supplement_2) ◽  
pp. A205-A206
Author(s):  
Mohanad AlGaeed ◽  
Tarrant McPherson ◽  
Ikjae Lee ◽  
Michelle Feese ◽  
Inmaculada Aban ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Myasthenia Gravis ◽  
Short Form ◽  
Small Sample ◽  
Screening Tools ◽  
Motor Disorder ◽  
Restless Legs ◽  
Patient Reported ◽  
Clinically Significant

Abstract Introduction Restless legs syndrome (RLS) is a sensori-motor disorder characterized by an urge to move the limbs during inactivity alleviated at least partially by walking/stretching. By contrast, myasthenia gravis (MG) is a neuromuscular disease with fluctuating weakness aggravated by continued muscle activity. Only a few studies addressed the prevalence of RLS in MG patients with limitations related to small sample size and/or usage of non-validated RLS screening tools. The aim of this study was to revisit the prevalence and impact of RLS in a large sample of MG patients using the validated 13-item short-form Cambridge-Hopkins diagnostic questionnaire for RLS (CH-RLSq13). Methods The MG foundation of America patient registry was used to survey MG patients. Only patients aged ≥18 years, residing in the USA, and who answered “yes” to the question “Has your doctor diagnosed you with MG?” were included in this study. A survey including the CH-RLSq13, demographic information, disease related history, and patient reported outcomes including the MG15-item Quality of Life (MG-QOL15) and the MG-Activities of Daily Living (MG-ADL) instruments was sent to MG registry participants as part of the semi-annual follow up. Results A total of 630 MG patients (age: 62.8±13.2; 54.9% Women; 94.6% White) completed the survey and met eligibility criteria (22% of patients receiving the survey). The prevalence of RLS was 14.8% (93/630). Clinically significant RLS (moderately/extremely distressing RLS ≥2–3 days/week) was present in 53 (8.4%) MG patients. MG patients with (versus without) RLS were significantly younger (p=0.0061), more women (p=0.0440), with higher (worse) depression (p<0.0001), MG-ADL (p=0.0001), and MG-QOL15 (p<0.0001) scores. Conclusion Clinically significant RLS is prevalent in MG patients and is associated with a negative impact on mood, daily activities, and quality of life. Therefore, from a clinical practice it seems warranted to screen for RLS in MG patients. Support (if any) This study was not funded.

scholarly journals Establishing Clinically Significant Outcomes After Meniscal Allograft Transplantation

2019 ◽  
Vol 7 (1) ◽  
pp. 232596711881846 ◽  
Author(s):  
Joseph N. Liu ◽  
Anirudh K. Gowd ◽  
Michael L. Redondo ◽  
David R. Christian ◽  
Brandon C. Cabarcas ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Lysholm Score ◽  
Meniscal Allograft Transplantation ◽  
Allograft Transplantation ◽  
Meniscal Allograft ◽  
Patient Reported ◽  
The Mean ◽  
Clinically Significant

Background: Traditionally, the primary outcome in meniscal allograft transplantation (MAT) has been long-term survivorship; however, short-term clinically significant outcomes are necessary to fully evaluate patient improvement after surgery. Purpose: To (1) establish the minimal clinically important difference (MCID) and patient acceptable symptomatic state (PASS) with respect to patient-reported outcome measures (PROMs) and (2) evaluate preoperative and intraoperative variables correlated with achieving these threshold values. Study Design: Cohort study (diagnosis); Level of evidence, 2. Methods: A prospectively maintained institutional registry was queried for all MATs performed between 1999 and 2017. The following PROM scores were collected: International Knee Documentation Committee (IKDC) score, Lysholm score, and Knee injury and Osteoarthritis Outcome Score (KOOS). Patients who completed preoperative and postoperative PROMs within a 1-month window were included to calculate the distribution-based MCID at this interval. An anchor question regarding satisfaction with surgery was asked at the same time point and was employed to determine the PASS using nonparametric receiver operating characteristic curve/area under the curve analysis. Multivariate regression analysis was performed to correlate patient demographics, medical history, and concomitant procedures to propensity in achieving the MCID and PASS. Results: A total of 98 patients who underwent MAT met the inclusion/exclusion criteria, of whom 10 underwent concomitant ligamentous procedures, 65 underwent concomitant cartilage procedures, and 7 underwent concomitant realignment procedures. The mean patient age was 29.4 ± 9.0 years, and the mean body mass index (BMI) was 26.8 ± 5.2 kg/m2. The distribution-based MCID and PASS were determined for the Lysholm score (12.3 and 66.5) and IKDC (9.9 and 36.0) as well as the KOOS Pain (9.9 and N/A ), Symptoms (9.7 and 73.0), Activities of Daily Living (9.5 and N/A), Sport (13.3 and N/A), and Quality of Life (14.6 and 53.0) subscales, respectively. A preoperative Short Form Physical Component Summary (SF PCS) score greater than 32.0 was predictive of postoperative satisfaction. Patients with work-related claims had a reduced likelihood of achieving the MCID for the IKDC and the PASS for the KOOS Symptoms. An increased BMI was also associated with failing to achieve the PASS for the KOOS Quality of Life (QOL). Conclusion: This study established the MCID and PASS for the Lysholm score, IKDC, and KOOS in patients undergoing MAT. Workers’ compensation and higher BMI were associated with failing to achieve clinically significant values. Lower preoperative Lysholm, IKDC, and KOOS scores were predictive of achieving the MCID, while higher preoperative SF PCS scores were associated with achieving satisfaction after MAT.

Association of Physical Morbidity and Health-Related Quality of Life in a Representative Sample of Older German People

2018 ◽  
Vol 25 (4) ◽  
pp. 140-151
Author(s):  
Markus A. Wirtz ◽  
Matthias Morfeld ◽  
Elmar Brähler ◽  
Andreas Hinz ◽  
Heide Glaesmer
Keyword(s):  
Quality Of Life ◽  
Representative Sample ◽  
Short Form ◽  
Physical Symptoms ◽  
German Population ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Abstract. The association between health-related quality of life (HRQoL; Short-Form Health Survey-12; SF-12) and patient-reported morbidity-related symptoms measured by the Patient Health Questionnaire-15 (PHQ-15) is analyzed in a representative sample of older people in the general German population. Data from 1,659 people aged 60 to 85 years were obtained. Latent class analysis identified six classes of patients, which optimally categorize clusters of physical symptoms the participants reported: musculoskeletal impairments (39.8%), healthy (25.7%), musculoskeletal and respiratory/cardiac impairments (12.8%), musculoskeletal and respiratory impairments, along with bowel and digestion problems (12.9%), general impairments (4.9%), and general impairments with no bowel and digestion problems (4.8%). The participants’ SF-12 Physical Health Scores (η2 = .39) and their Mental Health Scores (η2 = .28) are highly associated with these latent classes. These associations remain virtually identical after controlling for age. The results provide evidence that profiles of patient-reported physical impairments correspond strongly with reduced HRQoL independently from aging processes.

The Relationship between Restless Legs Syndrome and Quality of Life in Patients with Myasthenia Gravis

2019 ◽  
Vol 81 (3-4) ◽  
pp. 205-208
Author(s):  
Monica F. Ataide ◽  
Carolina da Cunha-Correia ◽  
Katia C.L. Petribú
Keyword(s):  
Quality Of Life ◽  
Myasthenia Gravis ◽  
Restless Legs Syndrome ◽  
Rating Scale ◽  
Cross Sectional Study ◽  
Cross Sectional ◽  
Restless Legs ◽  
Study Population ◽  
Clinical Conditions

Background: Restless legs syndrome (RLS) is characterized for an uncomfortable sensation in legs and an irresistible desire to move them. This disorder has been more recently recognized in patients with myasthenia gravis (MG) and can interfere with the quality of life (QOL). Objectives: The aims of this study are to describe the prevalence of RLS and its severity and influence on the QOL in patients with MG. Method: This was a cross-sectional study conducted from May to June 2016 in Recife, Brazil. A sample of 42 patients was interviewed using a sociodemographic questionnaire, MG QOL questionnaire-15 and The RLS Rating Scale. Results: RLS was present in 47.6% of patients and of these 40.5% met moderate to severe RLS criteria. Patients were 45 years on average (SD ± 14.4) and women represented 57.1% of the study population. Among patients with RSL, the quality-of-life scores were worse (p = 0.010) on average. There was no association of RLS with the duration of MG, use of immunosuppressant or clinical conditions that could mimic the occurrence of RLS. Conclusion: RLS is a prevalent condition in patients with MG, and may be severe enough to negatively impact QOL.

scholarly journals Impact of Medium Cut-Off Dialyzers on Patient-Reported Outcomes: COREXH Registry

2020 ◽  
pp. 1-9
Author(s):  
Juan Carlos Alarcon ◽  
Alfonso Bunch ◽  
Freddy Ardila ◽  
Eduardo Zuñiga ◽  
Jasmin I. Vesga ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Kidney Disease ◽  
Repeated Measures ◽  
Patient Reported Outcomes ◽  
Short Form ◽  
High Flux ◽  
Middle Molecules ◽  
Patient Reported ◽  
The Impact

<b><i>Introduction:</i></b> A new generation of hemodialysis (HD) membranes called medium cut-off (MCO) membranes possesses enhanced capacities for middle molecule clearance, which have been associated with adverse outcomes in this population. These improvements could potentially positively impact patient-reported outcomes (PROs). <b><i>Objective:</i></b> The objective of this study was to evaluate the impact of MCO membranes on PROs in a cohort of HD patients in Colombia. <b><i>Methods:</i></b> This was a prospective, multicenter, observational cohort study of 992 patients from 12 renal clinics in Colombia who were switched from high-flux HD to MCO therapy and observed for 12 months. Changes in Kidney Disease Quality of Life 36-Item Short Form Survey (KDQoL-SF36) domains, Dialysis Symptom Index (DSI), and restless legs syndrome (RLS) 12 months after switching to MCO membranes were compared with time on high-flux membranes. Repeated measures of ANOVA were used to evaluate changes in KDQoL-SF36 scores; severity scoring was used to assess DSI changes over time; Cochran’s Q test was used to evaluate changes in frequency of diagnostic criteria of RLS. <b><i>Results:</i></b> During 12 months of follow-up, 3 of 5 KDQoL-SF36 domains improved compared with baseline: symptoms (<i>p</i> &#x3c; 0.0001), effects of kidney disease (<i>p</i> &#x3c; 0.0001), and burden of kidney disease (<i>p</i> &#x3c; 0.001). The proportion of patients diagnosed with RLS significantly decreased from 22.1% at baseline to 10% at 12 months (<i>p</i> &#x3c; 0.0001). No significant differences in the number of symptoms (DSI, <i>p =</i> 0.1) were observed, although their severity decreased (<i>p</i> = 0.009). <b><i>Conclusions:</i></b> In conventional HD patients, the expanded clearance of large middle molecules with MCO-HD membranes was associated with higher health-related quality of life scores and a decrease in the prevalence of RLS.

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.

Quality of Life Scores Predict Survival Among Patients With Head and Neck Cancer

2008 ◽  
Vol 26 (16) ◽  
pp. 2754-2760 ◽  
Author(s):  
Carrie A. Karvonen-Gutierrez ◽  
David L. Ronis ◽  
Karen E. Fowler ◽  
Jeffrey E. Terrell ◽  
Stephen B. Gruber ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Head And Neck Cancer ◽  
Head And Neck ◽  
Neck Cancer ◽  
Short Form ◽  
Screening Tools ◽  
Physical Component Score ◽  
Component Score ◽  
Sf 36

Purpose The purpose of this study was to examine whether quality of life (QOL) scores predict survival among patients with head and neck cancer, controlling for demographic, health behavior, and clinical variables. Patients and Methods A self-administered questionnaire was given to 495 patients being treated for head and neck cancer while they were waiting to be seen for a clinic appointment. Data collected from the survey included demographics, health behaviors, and QOL as measured by Short Form-36 (SF-36) physical and mental component scores and the Head and Neck QOL scores. Clinical measures were collected by chart abstraction. Kaplan-Meier plots and univariate and multivariate Cox proportional hazards models were used to determine the association between QOL scores and survival time. Results After controlling for age, time since diagnosis, marital status, education, tumor site and stage, comorbidities, and smoking, the SF-36 physical component score and three of the four Head and Neck QOL scales (pain, eating, and speech domains) were associated with survival. Controlling for the same variables, the SF-36 mental component score and the emotional domain of the Head and Neck QOL were not associated with survival. Conclusion QOL instruments may be valuable screening tools to identify patients who are at high risk for poor survival. Those with low QOL scores could be followed more closely, with the potential to identify recurrence earlier and perform salvage treatments, thereby possibly improving survival for this group of patients.

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 &lt; .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 &gt; .001 but &lt; .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.

Evaluation of an online, skill-building, group intervention for patients with cancer: Pillars4Life.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 239-239
Author(s):  
Jonathan David O'Donnell ◽  
Amy Pickar Abernethy ◽  
Greg Samsa ◽  
Tina Staley ◽  
Kristin MacDermott ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Functional Assessment ◽  
Group Intervention ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Meaningful Improvement ◽  
Patient Reported ◽  
Clinically Significant ◽  
Patient Reported Measures

239 Background: Psychosocial distress is common for those with cancer; new interventions are needed. Pillars4Life is an online educational program that teaches coping skills in a group format. What is the relationship between participation in the LiveStrong-funded Pillars4Life program and personal psychosocial outcomes? Methods: This was a longitudinal observational cohort study. Cancer patients participating in the Pillars4Life program were recruited from the 17 hospitals that received the LiveStrong Community Impact Award. Consenting participants participated in 10 weekly sessions and completed electronic surveys at baseline and 3 months. Patient reported measures included: distress [Distress Thermometer (DT), Patient Care Monitor (PCM)], depression [Patient Health Questionnaire 9 (PHQ9)], anxiety [Generalized Anxiety Disorder 7 (GAD7)], posttraumatic stress [PTSD Checklist-Civilian (PCLC)], despair (PCM), fatigue [Functional Assessment of Chronic Illness Therapy (FACIT)], and cancer-related wellbeing [Functional Assessment of Cancer Therapy-General (FACTG)] outcomes. Results: Patient participants (n=130) were: mean age 56±11 years; 87% female; 89% white; 61% married; 48% employed; 51% had breast cancer; and 63% were receiving treatment. Mean scores significantly improved from baseline to month 3 on all patient-reported outcome measures: DT (-0.9), PCM Distress (-3.0), PHQ9 (-2.3), GAD7 (-2.3), PCLC (-4.3), PCM Despair (-2.9), FACT-G (4.7), all p<.001; and FACIT-Fatigue (3.3, p=.001). Patients who reported distress at baseline (DT≥4; n=70) had clinically significant improvements (moderate to strong effect sizes ranged from 0.5 to 1.0 standard deviation units) in DT; PCM Distress, Quality of Life, and Despair; PHQ9; GAD7; PCLC; FACTG, among others. Conclusions: Participation in Pillars4Life was associated with statistically and clinically significant improvements on key psychosocial and quality of life patient-reported outcomes measures. Importantly, distressed patients experienced meaningful improvement.

Compliance of subjects using electronic patient-reported outcomes (ePRO) in multinational prostate trials.

2014 ◽  
Vol 32 (4_suppl) ◽  
pp. 232-232
Author(s):  
Susan M. Dallabrida
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Clinical Trials ◽  
Patient Reported Outcomes ◽  
Short Form ◽  
Quality Data ◽  
Data Set ◽  
Patient Reported ◽  
Clinic Visits

232 Background: Patient Reported Outcomes (PRO) and electronic PRO (ePRO) are increasingly becoming an important aspect of cancer clinical trials and patient care, especially with regard to measuring drug efficacy, patient quality of life and drug safety. Subject compliance with completion of PRO/ePRO assessments is an important component for obtaining accurate and high-quality data when conducting clinical trials. It has been hypothesized that patient health status, length of time in a trial and country of origin, may affect compliance. Methods: To address this hypothesis, an operational analysis was conducted to assess oncology subject completion compliance of PRO reports using an electronic tablet to determine its suitability and performance in use. Toward this objective, the compliance of prostate cancer patients in completing three electronic questionnaires that were administered at clinic visits was evaluated. Subjects were asked to complete the Brief Pain Inventory – Short Form (BPI-SF) at every clinic visit. At some clinic visits, subjects were asked to additionally complete the Functional Assessment of Cancer Therapy – Prostate (FACT-P) and the Euro Quality of Life 5 Dimensions (EQ-5D). Questionnaires were completed electronically on the tablet. Percent completion was calculated as the number of questionnaires completed divided by the number of questionnaires expected, based on attended clinic visits compiled for this review and the administration schedule for the questionnaires. Results: This review draws on the experience of over 1,000 subjects from 21 countries, and describes the individual and overall compliance with the expected questionnaire completion, the variance between subsequent visits, and compliance by country. Conclusions: The collection of ePRO using a clinic-based tablet yielded a highly complete data set in prostate cancer subjects demonstrating that this is an effective and feasible approach for recording symptoms and quality of life assessments.

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.

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