scholarly journals Towards Tailored Patient’s Management Approach: Integrating the Modified 2010 ACR Criteria for Fibromyalgia in Multidimensional Patient Reported Outcome Measures Questionnaire

Arthritis ◽  
2016 ◽  
Vol 2016 ◽  
pp. 1-9 ◽  
Author(s):  
Yasser El Miedany ◽  
Maha El Gaafary ◽  
Sally Youssef ◽  
Ihab Ahmed
Keyword(s):  
Quality Of Life ◽  
Outcome Measures ◽  
Symptom Severity ◽  
Severity Score ◽  
Functional Disability ◽  
Response To Therapy ◽  
Widespread Pain ◽  
Acr Criteria ◽  
Symptom Severity Score

Objectives. To assess the validity, reliability, and responsiveness to change of a patient self-reported questionnaire combining the Widespread Pain Index and the Symptom Severity Score as well as construct outcome measures and comorbidities assessment in fibromyalgia patients. Methods. The PROMs-FM was conceptualized based on frameworks used by the WHO Quality of Life tool and the PROMIS. Initially, cognitive interviews were conducted to identify item pool of questions. Item selection and reduction were achieved based on patients as well as an interdisciplinary group of specialists. Rasch and internal consistency reliability analyses were implemented. The questionnaire included the modified ACR criteria main items (Symptom Severity Score and Widespread Pain Index), in addition to assessment of functional disability, quality of life (QoL), review of the systems, and comorbidities. Every patient completed HAQ and EQ-5D questionnaires. Results. A total of 146 fibromyalgia patients completed the questionnaire. The PROMs-FM questionnaire was reliable as demonstrated by a high standardized alpha (0.886–0.982). Content construct assessment of the functional disability and QoL revealed significant correlation (p<0.01) with both HAQ and EQ-5D. Changes in functional disability and QoL showed significant (p<0.01) variation with diseases activity status in response to therapy. There was higher prevalence of autonomic symptoms, CVS risk, sexual dysfunction, and falling. Conclusions. The developed PROMs-FM questionnaire is a reliable and valid instrument for assessment of fibromyalgia patients. A phased treatment regimen depending on the severity of FMS as well as preferences and comorbidities of the patient is the best approach to tailored patient management.

AB0547 INVESTIGATION OF THE PRESENCE OF FIBROMYALGIA SYNDROME IN PATIENTS WITH SCLERODERMA

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1570-1570
Author(s):  
A. Ayan ◽  
H. Hekim ◽  
S. Y. Cetin
Keyword(s):  
Quality Of Life ◽  
Systemic Sclerosis ◽  
Symptom Severity ◽  
Fibromyalgia Syndrome ◽  
Widespread Pain ◽  
Severity Scale ◽  
Symptom Severity Scale ◽  
Acr Criteria ◽  
Diffuse Systemic Sclerosis

Background:As with other connective tissue diseases, fibromyalgia (FMS) syndrome is not uncommon in scleroderma. However, there is no clear information about it in the literature. According to 1990 ACR criteria, sensitive point evaluation was made in scleroderma and FMS frequency was reported as 18.6% in scleroderma patients. However, it is known that fibrosis creates difficulties in sensitive point determination. moreover, ACR 1990 criteria cannot be met in approximately 25% of fibromyalgia patients. Therefore, the frequency of fibromyalgia in scleroderma patients is unclear. In 1990, ACR announced new criteria in 2010 due to the low sensitivity of ACR criteria to FMS detection and not being used in the follow-up of the disease. In the new set of criteria, not the 18 sensitive point evaluations, but the Widespread Pain Index and Symptom Severity Scale are evaluated.Objectives:In this study, we planned to investigate the frequency of fibromyalgia in systemic sclerosis patients according to the new ACR criteria defined in 2010.Methods:43 patients with diffuse systemic sclerosis with no known additional diseases were included in the study. Patients were evaluated with the new fibromyalgia diagnostic criteria set. Patients were evaluated with Fibromyalgia Impact Questionnaire (FIQ), Pain Location Score (PLS), Symptom Impact Questionnaire (SEA), Widespread Pain Index (WPI) and Symptom Severity Scale (SSS).Results:The mean age of the patients was 53.45 ± 12.87 years (39 women, 4 men). Mean values were FIQ: 46.05 ± 17.44, PLS:18.32 ± 9.87, SEA: 20.76 ± 11.31, WPI: 7.93 ± 5.87, SSS: 6.51 ± 3.41 respectively. According to these results, 62.8% (n: 27) FMS presence of SS patients was detected.Conclusion:In the literature, there are only a few studies evaluating the frequency of FMS in scleroderma patients. Malcarne et al. reported that 18.6% of 102 SSc patients met the 1990 classification criteria for FMS. However, there are predominantly early-stage systemic sclerosis patients in this study and the patient group is heterogeneous. We included patients with diffuse systemic sclerosis and widespread skin involvement in this study. we found a much higher frequency of fibromyalgia syndrome than indicated in the literature. Considering that systemic sclerosis is a serious disease that significantly impairs quality of life, this finding is very important. In order to relieve the symptoms associated with FMS, it is important to provide them with additional medical support, to provide as much exercise as possible, and to provide group therapies to improve patients’ quality of life.References:[1]Management of Musculoskeletal Involvement in Systemic Sclerosis. Philip Clements. Curr Treatm Opt Rheumatol. 2016 Mar; 2(1): 61–68.[2]Malcarne VL, Hansdottir I, McKinney A, Upchurch R, Greenbergs HL, Henstorf GH, Furst DE, Clements PJ, Weisman MH. Medical signs and symptoms associated with disability, pain, and psychosocial adjustment in systemic sclerosis. J Rheumatol. 2007;34:359–367.Disclosure of Interests:None declared

scholarly journals Omalizumab for the treatment of allergic rhinitis: a systematic review and meta-analysis

2021 ◽  
Vol 0 (0) ◽  
pp. 0-0
Author(s):  
S. Tsabouri ◽  
G. Ntritsos ◽  
F. Koskeridis ◽  
E. Evangelou ◽  
P. Olsson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Allergic Rhinitis ◽  
Symptom Severity ◽  
Meta Analysis ◽  
Mean Difference ◽  
Efficacy And Safety ◽  
Symptom Severity Score ◽  
Large Heterogeneity ◽  
Standardized Mean Difference

Background: Allergic rhinitis (AR), an IgE mediated inflammatory disease, significantly impacts quality of life of a considerable proportion of the general population. Omalizumab, a humanized monoclonal antibody against IgE, has been evaluated for both seasonal and perennial AR. We aimed to assess the efficacy and safety of omalizumab in randomized controlled trials (RCTs) in inadequately controlled AR. Methods: We conducted a systematic literature search of RCTs evaluating the safety and efficacy of omalizumab in AR. We synthesized evidence for clinical improvement of AR symptoms, quality of life, reduction of the use of rescue medication, and adverse events. Results: The systematic search returned 289 articles, of which 12 RCTs were eligible for data extraction and meta-analysis. Omalizumab reduced the Daily Nasal Symptom Severity Score (DNSSS) by a summary standardized mean difference of -0.41 points with large heterogeneity; omalizumab significantly reduced the DNSSS both in the 3 cedar pollen-induced AR trials by -0.97 points and to a lower extent in the remaining five non-cedar trials by -0.19 points. Omalizumab also improved the Daily Ocular Symptom Severity Score (DOSSS) by a summary standardized mean difference of -0.30 points with large heterogeneity; the Rhino-conjunctivitis Quality of Life Questionnaire by a summary standardized mean difference of -0.45 points with no heterogeneity and the mean daily consumption of rescue antihistamines by a summary standardized mean difference of -0.21 with large heterogeneity. No statistically significant difference in the occurrence of adverse events was observed between omalizumab and placebo. Conclusion: Our findings further support the efficacy and safety of omalizumab in the management of patients with allergic rhinitis inadequately controlled with a conventional treatment.

scholarly journals The longitudinal use of EmPHasis-10 and CAMPHOR questionnaire health-related quality of life scores in patients with pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension

2021 ◽  
Vol 42 (Supplement_1) ◽  
Author(s):  
P Hendriks ◽  
M C J Van Thor ◽  
M Wapenaar ◽  
P P Chandoesing ◽  
L Van Den Toorn ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pulmonary Hypertension ◽  
Symptom Severity ◽  
Health Related Quality ◽  
Symptom Severity Score ◽  
Related Quality ◽  
Health Related ◽  
Echocardiographic Parameters ◽  
Pulmonary Arterial

Abstract Background Health-related quality of life (HRQoL) is impaired in patients with pulmonary hypertension (PH). The EmPHasis-10 and CAMPHOR questionnaires are developed to evaluate HRQoL specifically in patients with PH. Data on the longitudinal use of both questionnaires are still limited. Purpose This paper will evaluate and compare the longitudinal value of two health-related quality of life questionnaires specific for patients with pulmonary hypertension (CAMPHOR and EmPHasis-10 questionnaires) using a broad spectrum of clinical anchor points. Furthermore we will establish minimal clinically important differences (MCID) for both questionnaires. Methods Sixty-one treatment naïve pulmonary arterial hypertension or chronic thromboembolic patients were prospectively included. Patients were treated according to the current ESC/ERS guidelines. We compared EmPHasis-10 and CAMPHOR scores between baseline, 6 and 12 months of follow-up and evaluated the correlation between these scores and a 5-scale symptom severity score, 5-scale overall health score, NYHA-classification, six minute walk test distance (6MWD), NT-proBNP and echocardiographic parameters. MCIDs were calculated using distribution and anchor based calculations. Results After one year of treatment a significant reduction in EmPHasis-10 score and CAMPHOR QoL and symptoms domain score was observed. Moderate to good correlations were observed between the questionnaires and the overall-health and symptom severity score and 6MWD. No relevant correlations were seen between the questionnaires and NT-pro-BNP and echocardiographic parameters. EmPHasis-10 scores showed strong correlations with all CAMPHOR domains. The MCID for the EmPHasis-10 questionnaire was −8. The MCIDs for the CAMPHOR domains were: activity −3, symptoms −4, QoL −3. Conclusion The EmPHasis-10 and CAMPHOR questionnaires are valid tools for the longitudinal measurement of HRQoL in patients with PH. The much shorter EmPHasis-10 correlates well with the CAMPHOR domain scores and with the clinical endpoints and it may be easier to use in daily practice. We established acceptable MCIDs. FUNDunding Acknowledgement Type of funding sources: Private company. Main funding source(s): This research project was supported by an unrestricting grant by Actelion pharmaceuticals.

Behavioural measures of pain

2013 ◽  
pp. 379-383 ◽  
Author(s):  
Jill MacLaren Chorney ◽  
C. Meghan McMurtry
Keyword(s):  
Quality Of Life ◽  
Chronic Pain ◽  
Children And Adolescents ◽  
Outcome Measures ◽  
Clinical Case ◽  
Functional Disability ◽  
Procedural Pain ◽  
Future Directions ◽  
Current State

This chapter reviews the current state of evidence on behavioural measures of pain in children and adolescents including a brief discussion of future directions. To demonstrate the utility of behavioural scales, it also includes a clinical case example at the end of this chapter. A few limits of coverage should be noted. First, although some of the measures included in this chapter may have been used for infants, we will not review measures that are only validated for infants as these measures are covered by Lee and Stevens (Chapter 35, this volume)). Second, given that there are no well-established behavioural measures of chronic pain, this chapter will focus on measures that are relevant to acute and procedural pain and will also not cover other pain-related outcome measures (e.g. functional disability, quality of life).

scholarly journals QOLP-07. HEALTH-RELATED QUALITY OF LIFE AND SYMPTOM BURDEN IN PATIENTS WITH NEWLY DIAGNOSED GLIOBLASTOMA TREATED WITH BEVACIZUMAB BEYOND PROGRESSION: A PROSPECTIVE TRIAL

2020 ◽  
Vol 22 (Supplement_2) ◽  
pp. ii176-ii176
Author(s):  
Shota Tanaka ◽  
Yoshitaka Narita ◽  
Akitake Mukasa ◽  
Motoo Nagane ◽  
Tomokazu Aoki ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Symptom Severity ◽  
Symptom Burden ◽  
Newly Diagnosed ◽  
Health Related Quality ◽  
Symptom Severity Score ◽  
Related Quality ◽  
Health Related ◽  
Newly Diagnosed Glioblastoma

Abstract BACKGROUND In BIOMARK trial, patients with newly diagnosed glioblastoma were treated with standard chemoradiotherapy combined with first-line bevacizumab; a subset of patients continued bevacizumab beyond progression (BBP). Neurocognitive function (NCF), symptom burden, and health-related quality of life (HRQoL) were examined as secondary endpoints. PATIENTS AND METHODS In the primary protocol, newly diagnosed glioblastoma patients aged 20-75 received standard 6-week radiotherapy combined with temozolomide and bevacizumab followed by 4-week cycles of temozolomide plus bevacizumab, and then 2-3-week cycles of bevacizumab monotherapy. Upon recurrence, patients were subjected to the secondary protocol with 2-3-week cycles of bevacizumab monotherapy with or without other chemotherapeutic agents. NCF tests (Hopkins verbal learning test-revised, trail making test, and controlled oral word association), EORTC QLQ-C30/BN20, and MDASI-BT were completed by the patients. Time to deterioration (TTD) was defined as the time from randomization until a pre-specified change from baseline without further improvement or death. The Kaplan-Meier method and the log-rank test were used to assess TTD for each subscale of the above tests. RESULTS Overall, 94 patients were enrolled in the study. Analyses were based on the full analysis set cohort (N=90), excluding non-glioblastoma diagnosis by central review. The median overall survival (OS) and progression-free survival (PFS) were 25.0 and 14.9 months, respectively. Baseline HRQoL and symptom burden subscales (emotional functioning, symptom severity score, affective factor, and focal factor) were significantly associated with PFS. The median TTD was 8.7, 7.5, 8.1 months for global health status/QoL, symptom severity score, interference score, respectively. Among patients who experienced recurrence, disease progression was apparently preceded by deterioration in terms of symptom burden. CONCLUSIONS Detailed analysis of HRQoL and symptom burden may aid care of glioblastoma patients throughout the disease trajectory.

scholarly journals SWE and SMI ultrasound techniques for monitoring needling treatment of ankylosing spondylitis: study protocol for a single-blinded randomized controlled trial

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Mengyu Wang ◽  
Wen Fu ◽  
Lingcui Meng ◽  
Jia Liu ◽  
Lihua Wu ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Blood Flow ◽  
Ankylosing Spondylitis ◽  
Outcome Measures ◽  
Healthy Subjects ◽  
Acupuncture Group ◽  
Musculoskeletal Ultrasound ◽  
Sham Control ◽  
Post Intervention

Abstract Background Ankylosing spondylitis (AS) is a high-incidence disease in young men that interferes with patients’ physical and mental wellbeing and overall quality of life (QoL). It is often accompanied by arthralgia, stiffness, and limited lumbar flexibility. Acupuncture is safe and effective for reducing the symptoms of AS, but the underlying mechanisms by which it does so are not fully understood. Therefore, to objectively assess acupuncture efficacy, which is critical for patients making informed decisions about appropriate treatments, we will use shear-wave elastography (SWE) and superb microvascular imaging (SMI) ultrasound techniques to evaluate elasticity of lumbar paraspinal muscles and blood flow to the sacroiliac joint (SIJ) in AS. Methods We will recruit a total of 60 participants diagnosed with AS and 30 healthy subjects. Participants will be randomly allocated 1:1 to either an acupuncture group or a sham control acupuncture group. Primary-outcome measures will be musculoskeletal ultrasound, Ankylosing Spondylitis Quality of Life Scale (ASQoL), Bath Ankylosing Spondylitis Metrology Index (BASMI), and the Visual Analogue Scale (VAS) for pain. Secondary outcome measures will be the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI), Bath Ankylosing Spondylitis Function Index (BASFI), and Fatigue Scale-14 (FS-14). We will monitor the effect of acupuncture or sham acupuncture on blood flow and SIJ inflammation using SMI, lumbar-muscle stiffness using SWE and the lumbar paraspinal-muscle cross-sectional area (CSA) using a two-dimensional (2D) grayscale imaging. QoL, physical function, and fatigue will be assessed using an evaluation scale or questionnaire developed for this study, with outcomes measured by the ASQoL, BASMI, BASDAI, BASFI, and FS-14. Healthy subjects will not receive acupuncture but undergo only musculoskeletal ultrasound at baseline. Acupuncture and sham control acupuncture interventions will be conducted for 30 min, 2–3 times/week for 12 weeks. Musculoskeletal ultrasound will be conducted at baseline and post-intervention, while other outcomes will be measured at baseline, 6 weeks, and post-intervention. The statistician, outcome assessor, and participants will be blinded to treatment allocation. Discussion The results of this single-blinded, randomized trial with sham controls could help demonstrate the efficacy of acupuncture and clarify whether musculoskeletal ultrasound could be used to evaluate AS. Trial registration ClinicalTrials.gov ChiCTR2000031476. Registered 3 April 2020.

510 A Profile of Physical Performance Variables in an Out-Patient Adult Population with Narcolepsy

SLEEP ◽  
2021 ◽  
Vol 44 (Supplement_2) ◽  
pp. A201-A201
Author(s):  
Ragy Tadrous ◽  
Julie Broderick ◽  
Niamh Murphy ◽  
Lisa Slattery ◽  
Gillian Quinn ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Physical Performance ◽  
Symptom Severity ◽  
Health Related Quality ◽  
Cardiopulmonary Fitness ◽  
Performance Variables ◽  
Related Quality ◽  
Health Related

Abstract Introduction Narcolepsy can significantly impact the physical and mental wellbeing of people with narcolepsy, and has been associated with significant reductions in quality of life and physical performance. People with narcolepsy demonstrate many barriers to being physically fit and active, such as sleepiness and social isolation. Despite physical functioning and vitality being the most affected domains of health-related quality of life in this cohort, little is known about how physical performance variables are affected in people with narcolepsy. Methods This cross-sectional study profiled the physical performance of adults with narcolepsy attending the Narcolepsy Centre located in St. James’s Hospital. Participants underwent a physical performance test battery that investigated cardiopulmonary fitness, physical activity, muscle strength and endurance. Furthermore, health-related quality of life (HRQoL), symptom severity and sedentary behaviour was ascertained through self-report questionnaires. Results A total of 23 participants were recruited in this study. The majority of participants were female (n=13, 56.52%) and the mean age was 31.53 (± 13.17) years. Physical performance was generally found to be lower than age-and-gender matched normative values for cardiopulmonary fitness, physical activity and muscle strength and endurance. Participants’ completed 42.20 ± 21.41 minutes of moderate-vigorous physical activity daily as measured by actigraphy. Considerable sedentary behaviour was objectively measured in this sample (10.21 hours). Symptom severity was high as measured by the Epworth Sleepiness Scale and the Narcolepsy Severity Scale, and participants reported reduced quality of life when compared to general population norms (US, UK, France and Norway). Conclusion Markedly reduced physical performance was identified in this sample of people with narcolepsy, irrespective of participant age, gender and BMI. Future research should explore the role of exercise in improving the physical fitness in people with narcolepsy, and the influence of exercise on HRQoL and symptom severity in this cohort. Support (if any) This study was completed as part of Mr Ragy Tadrous’ Master of Science (MSc) degree in Trinity College Dublin. This degree was co-sponsored by the Physiotherapy Department in St. James’s Hospital, Dublin.

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