Outcomes

2013 ◽  
pp. 221-226
Author(s):  
David L. Scott
Keyword(s):  
Quality Of Life ◽  
Disease Activity ◽  
Short Form ◽  
Organ Damage ◽  
Confounding Factors ◽  
Short Term ◽  
Self Assessment ◽  
The Matrix ◽  
The Impact

Outcomes evaluate the impact of disease. In rheumatology they span measures of disease activity, end-organ damage, and quality of life. Some outcomes are categorical, such as the presence or absence of remission. Other outcomes involve extended numeric scales such as joint counts, radiographic scores, and quality of life measures. Outcomes can be measured in the short term—weeks and months—or over years and decades. Short-term outcomes, though readily related to treatment, may have less relevance for patients. Clinical trials focus on short-term outcomes whereas observational studies explore longer-term outcomes. The matrix of rheumatic disease outcomes is exemplified by rheumatoid arthritis. Its outcomes span disease activity assessments like joint counts, damage assessed by erosive scores, quality of life evaluated by disease-specific measures like the Health Assessment Questionnaire (HAQ) or generic measures like the Short Form 36 (SF-36), overall assessments like remission, and end result such as joint replacement or death. Outcome measures capture the impact of treating rheumatic diseases. They are influenced by disease severity and effective treatment. They also reflect many confounding factors. These include demographic factors like age, gender, and ethnicity and also deprivation, as poverty worsens outcomes. Comorbidities affect outcomes and patients with multiple comorbid conditions have worse quality of life with poorer outcomes. Patient self-assessment has grown in importance; it is simple and understandable. However, self-assessment can vary over time and does not always reflect assessors’ perspectives. Caution is needed comparing outcomes across units; the various confounding factors and measurement complexities make such comparative analyses challenging.

Outcomes

2016 ◽  
Author(s):  
David L. Scott
Keyword(s):  
Quality Of Life ◽  
Disease Activity ◽  
Short Form ◽  
Health Assessment ◽  
Organ Damage ◽  
Confounding Factors ◽  
Short Term ◽  
The Matrix ◽  
The Impact

Outcomes evaluate the impact of disease. In rheumatology they span measures of disease activity, end-organ damage, and quality of life. Some outcomes are categorical, such as the presence or absence of remission. Other outcomes involve extended numeric scales such as joint counts, radiographic scores, and quality of life measures. Outcomes can be measured in the short term—weeks and months—or over years and decades. Short-term outcomes, though readily related to treatment, may have less relevance for patients. Clinical trials focus on short-term outcomes whereas observational studies explore longer-term outcomes. The matrix of rheumatic disease outcomes is exemplified by rheumatoid arthritis. Its outcomes span disease activity assessments like joint counts, damage assessed by erosive scores, quality of life evaluated by disease-specific measures like the Health Assessment Questionnaire (HAQ) or generic measures like the Short Form 36 (SF-36), overall assessments like remission, and end result such as joint replacement or death. Outcome measures are used to capture the impact of treating rheumatic diseases, and are influenced by both disease severity and the effectiveness of treatment. However, they are also influenced by a range of confounding factors. Demographic factors like age, gender, and ethnicity can all have crucial impacts. Deprivation is important, as poverty invariably worsens outcomes. Finally, comorbidities affect outcomes and patients with multiple comorbid conditions usually have worse quality of life with poorer outcomes for all diseases. These multiple confounding factors mean comparing outcomes across units without adjustment will invariably show major differences.

Outcomes

2013 ◽  
Author(s):  
David L. Scott
Keyword(s):  
Quality Of Life ◽  
Disease Activity ◽  
Short Form ◽  
Health Assessment ◽  
Organ Damage ◽  
Confounding Factors ◽  
Short Term ◽  
The Matrix ◽  
The Impact

Outcomes evaluate the impact of disease. In rheumatology they span measures of disease activity, end-organ damage, and quality of life. Some outcomes are categorical, such as the presence or absence of remission. Other outcomes involve extended numeric scales such as joint counts, radiographic scores, and quality of life measures. Outcomes can be measured in the short term—weeks and months—or over years and decades. Short-term outcomes, though readily related to treatment, may have less relevance for patients. Clinical trials focus on short-term outcomes whereas observational studies explore longer-term outcomes. The matrix of rheumatic disease outcomes is exemplified by rheumatoid arthritis. Its outcomes span disease activity assessments like joint counts, damage assessed by erosive scores, quality of life evaluated by disease-specific measures like the Health Assessment Questionnaire (HAQ) or generic measures like the Short Form 36 (SF-36), overall assessments like remission, and end result such as joint replacement or death. Outcome measures are used to capture the impact of treating rheumatic diseases, and are influenced by both disease severity and the effectiveness of treatment. However, they are also influenced by a range of confounding factors. Demographic factors like age, gender, and ethnicity can all have crucial impacts. Deprivation is important, as poverty invariably worsens outcomes. Finally, comorbidities affect outcomes and patients with multiple comorbid conditions usually have worse quality of life with poorer outcomes for all diseases. These multiple confounding factors mean comparing outcomes across units without adjustment will invariably show major differences.

scholarly journals AB0064 EVALUATION OF QUALITY OF LIFE IN RHEUMATOID ARTHRITIS USING SF-36 AND HAQ SCALES

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 1063.1-1063
Author(s):  
M. Brahem ◽  
M. Hassayoun ◽  
H. Hachfi ◽  
R. Sarraj ◽  
M. Ardhaoui ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Rheumatoid Arthritis ◽  
Disease Activity ◽  
Short Form ◽  
Bodily Pain ◽  
Global Score ◽  
Sf 36 ◽  
The Mean ◽  
The Impact

Background:The assessment of health-related quality-of-life (HRQoL) in rheumatoid arthritis (RA) is becoming a common tool in clinical practice. The medical outcomes survey short form 36 (SF- 36) is one of the most widely used tools for measuring HRQoL in RA as well as the HAQ scale.Objectives:The aim of our study is to evaluate the impact of the RA in the quality of life (QoL) of our patients using the SF-36 and the HAQ questionnaires.Methods:This is a cross-sectional study during a period of the year 2020, including 70 patients followed in the department of Rheumatology in Mahdia, Tunisia. All patients were diagnosed with RA based in ACR 1987/EULAR 2010. We evaluated for each patient, the mean global scale and the eight domains of SF-36 (physical functioning (PF), role physical (RP), bodily pain (BP), general health (GH), vitality (VT), a social functioning (SF), role emotional (RE) and mental health (MH)), scored from 0 (worst) to 100 (best).Results:Our study included 70 patients (59 females/11males) with an age ranged from 21 to 76 years. The mean age was 54 ± 12 years. The mean duration of the disease was 11 ± 10 years [1-40]. The mean number of tender joints was 9.7 ±9.4 and swollen joints were 4.2 ±6.1. The mean disease activity score (DAS28) was 4.6 ±1.9 [1.2-8.4]. The mean HAQ score was 1.5±1.3, 47.1% of patients had specific joint deformations, 82.9% had radiologic involvement and 31.4% had osteoporosis. The biologic analysis showed that the mean ESR was 46.7 ± 30.5 and the CRP was 15.8 ±23.3. Rheumatoid factors were positive in 42.9% of cases, the ACPA were positive in 50% of cases. 84.3% of RA patients were treated by methotrexate, 4.3% were treated by salazopyrin and 11.4% were treated by biologic treatments.The SF-36 global score was 50.4 ± 26.3 [15.3-92.8]. 46 patients (65.7% of cases) had impaired QoL (SF-36<66.7). The means of different domains (PF, RP, BP, GH, VT, SF, RE, MH) were respectively 51; 41.4; 51.4; 50; 51.2; 57.7; 41.9; 59.2. The most severely impacted domains were the RP and RE.Our study showed a significant correlation between the SF-36 global score and the number of tender joints (p=0.002), the DAS28 (p=0.017) and the HAQ(p=0.000).Conclusion:Our study showed that 65.7% of RA patients presented impaired QoL (SF-36<66.7), which is associated with high disease activity. So it’s important to jugulate the disease, in order to ameliorate the quality of life of our patients.References:[1]Matcham, F., Scott, IC, Rayner, L., Hotopf, M., Kingsley, GH, Norton, S.,… Steer, S. (2014). L’impact de la polyarthrite rhumatoïde sur la qualité de vie évalué à l’aide du SF-36: une revue systématique et une méta-analyse. Séminaires sur l’arthrite et les rhumatismes, 44 (2), 123-130. doi: 10.1016 / j.semarthrit.2014.05.001.Disclosure of Interests:None declared

scholarly journals The impact of symptoms on daily life as perceived by patients with Charcot-Marie-Tooth type 1A disease

2021 ◽  
Author(s):  
Stefano Tozza ◽  
Dario Bruzzese ◽  
Daniele Severi ◽  
Emanuele Spina ◽  
Rosa Iodice ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Daily Life ◽  
Short Form ◽  
Lower Limbs ◽  
Charcot Marie Tooth ◽  
Rank Analysis ◽  
Sf 36 ◽  
Tooth Type ◽  
The Impact

Abstract Introduction In Charcot-Marie-Tooth type 1A (CMT1A) patients, daily life is mainly influenced by mobility and ambulation dysfunctions. The aim of our work was to evaluate the perception of disturbances that mostly impact on daily life in CMT1A patients and its difference on the basis of age, gender, disability, and quality of life. Methods Forty-one CMT1A patients underwent neurological assessment focused on establishing clinical disability through the Charcot-Marie-Tooth Neuropathy Score (CMTNS) and quality of life through the Short Form-36 (SF-36) questionnaire. We identified from CMT disturbances 5 categories [weakness in lower limbs (WLL), weakness in upper limbs (WUL), skeletal deformities (SD), sensory symptoms (SS), balance (B)] and patients classified the categories from the highest to the lowest impact on daily life (1: highest; 5: lowest). Ranking of the 5 categories, in the overall sample and in the different subgroups (dividing by gender, median of age and disease duration, CMTNS, domains of SF-36), was obtained and differences among subgroups were assessed using a bootstrap approach. Results Rank analysis showed that WLL was the most important disturbance on daily life whereas WUL had the lowest impact. In the older CMT1A group, the most important disturbance on daily life was B that was also the most relevant disturbance in patients with a greater disability. SD influenced daily life in younger patients. SS had less impact on daily life, with the exception of patients with a milder disability. Discussion Our findings demonstrated that the perception of disturbances that mostly impact on CMT1A patients’ daily life changes over the lifetime and with degree of disability.

scholarly journals Impact of depression on quality of life in systemic lupus erythematosus patients

2021 ◽  
Vol 57 (1) ◽  
Author(s):  
Eman M. Khedr ◽  
Rania M. Gamal ◽  
Sounia M. Rashad ◽  
Mary Yacoub ◽  
Gellan K. Ahmed
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Short Form ◽  
Systemic Lupus ◽  
Positive Correlation ◽  
Depressed Patients ◽  
Sf 36 ◽  
The Impact

Abstract Background Depression is common in systemic lupus erythematosus (SLE) and is an unmeasured risk factor, yet its symptoms can be neglected in standard disease evaluations. The purpose of this study was to assess the frequency and the impact of depression on quality of life in SLE patients. We recruited 32 patients with SLE and 15 healthy control volunteers in the study. The following investigations were undertaken in each patient: clinical and rheumatologic assessment, SLE Disease Activity Index-2k (SLEDAI-2k), Beck Depression Inventory (BDI), Short-Form Health Survey (SF-36) questionnaire, and routine laboratory tests. Results There was a high percentage of depression (46.9%) in the SLE patients. Regarding quality of life (SF-36), there were significant affection of the physical and mental composite summary domains (PCS and MCS) scores in lupus patients compared with controls (P < 0.000 for both) with the same significant in depressed compared with non-depressed patients. SF-36 subscales (physical function, limit emotional, emotional wellbeing, and social function) were significantly affected in depressed lupus patients compared with non-depressed patients. There was a significant negative correlation between the score of MCS domain of SF-36 with BDI (P < 0.000) while positive correlation between SLEDAI score with depression score. In contrast, there were no significant correlations between MCS or PCS with age, duration of illness, or SLEDAI-2K. Conclusions Depression is common in SLE patients and had a negative impact on quality of life particularly on MCS domain and positive correlation with disease severity score. Trial registration This study was registered on clinical trial with registration number: NCT03165682 https://clinicaltrials.gov/ct2/show/NCT03165682 on 24 May 2017.

scholarly journals P181 Long-term improvement in axial spondyloarthritis clinical outcomes following 2-weeks of intensive education and rehabilitation: results from the Bath residential rehabilitation programme

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Rosie Barnett ◽  
Anita McGrogan ◽  
Matthew Young ◽  
Charlotte Cavill ◽  
Mandy Freeth ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Disease Activity ◽  
Axial Spondyloarthritis ◽  
Rehabilitation Programme ◽  
Spinal Mobility ◽  
The Impact

Abstract Background/Aims  Axial spondyloarthritis (axSpA) is a chronic rheumatic condition, characterised by inflammatory back pain - often associated with impaired function and mobility, sleep disturbance, fatigue, and reduced quality of life. Despite the vast advances in pharmacological treatments for axSpA over the last few decades, physical activity and rehabilitation remain vital for effective disease management. At the Royal National Hospital for Rheumatic Diseases in Bath (RNHRD), the 2-week inpatient axSpA rehabilitation programme has been integral to axSpA care since the 1970’s. Prior research has demonstrated significant short-term improvements in spinal mobility (BASMI), function (BASFI) and disease activity (BASDAI) following course attendance. However, the long-term outcomes are yet to be evaluated in this unique cohort. Methods  Since the early 1990’s, clinical measures of spinal mobility, function and disease activity have been routinely collected at the RNHRD at all clinical appointments through administration of the BASMI, BASFI and BASDAI, respectively. Dates of attending the axSpA course and standard clinical and treatment follow-up data were also collected. Multiple linear regression models were used to investigate the impact of course attendance on final reported BASMI, BASDAI and BASFI scores (final score=most recent). Length of follow-up was defined as time between first and last recorded BASMI. Results  Of the 203 patients within the Bath SPARC200 cohort, 77.8% (158/203) had attended at least one rehabilitation course throughout follow-up. 70.0% (140/203) of patients were male. The mean duration of follow-up was 13.5 years (range 0-35 years); 28.1% (57/203) of individuals with 20+ years of follow-up. Course attendance (yes versus no) significantly reduced final BASMI score by 0.84 (p = 0.001, 95%CI -1.31 to -0.37) and final BASDAI score by 0.74 (p = 0.018, 95%CI -1.34 to -0.13). Although course attendance reduced final BASFI by 0.45 (95%CI -1.17 to 0.28), this relationship did not reach significance (p = 0.225). Whilst minimally clinically important difference (MCID) is, to our knowledge, yet to be defined for BASMI, MCIDs were achieved long-term for both BASDAI and BASFI - defined by van der Heijde and colleagues in 2016 as 0.7 and 0.4 for BASDAI and BASFI, respectively. Conclusion  These results provide novel evidence to support the integral role of education, physical activity and rehabilitation in the management of axSpA. Future work should investigate additional outcomes of critical importance to patients and clinicians, such as fatigue, quality of life and work productivity. Furthermore, a greater understanding of the factors that confound these outcomes may provide insights into those patients who may most benefit from attending a 2-week rehabilitation course. In addition to facilitating identification of those patients who may require additional clinical support. Disclosure  R. Barnett: None. A. McGrogan: None. M. Young: None. C. Cavill: None. M. Freeth: None. R. Sengupta: Honoraria; Biogen, Celgene, AbbVie, Novartis, MSD. Grants/research support; Novartis, UCB.

scholarly journals SAT0232 PERCEPTION OF THE DISEASE IN PATIENTS WITH EARLY SYSTEMIC LUPUS ERYTHEMATOSUS

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1059.3-1059
Author(s):  
M. Garabajiu ◽  
L. Mazur-Nicorici ◽  
T. Rotaru ◽  
V. Salaru ◽  
S. B. Victoria ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Disease Activity ◽  
Lupus Erythematosus ◽  
Disease Duration ◽  
Activity Index ◽  
Damage Index ◽  
Organ Damage ◽  
Systemic Lupus

Background:Systemic lupus erythematosus is an autoimmune disease with a major impact on patient’s quality of life.Objectives:To evaluate patient’s attitude toward early disease and factors that influence it.Methods:Performed case-control study included SLE patients that fulfilled SLICC, 2012 classification criteria. The research included two groups of patients: early SLE – 1stgroup (disease duration ≤24 months) and non-early SLE – 2ndgroup control (disease duration >24 months). The pattern of the disease activity was assessed by patient global assessment (PGA), Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2K) and Systemic Lupus Activity Measure (SLAM), for SLE activity, SLICC/ACR Damage Index (DI) for disease irreversible changes and SF-8 for the Quality of Life (QoL).Results:A total of 101 SLE patients with 34 in the 1stgroup (early SLE) and 67 in the 2ndgroup (non-early SLE) was analyzed. The disease activity showed high disease activity in both groups by SLEDAI (7,02±4,16 and 6,26±4,43 points, p>0,05) and SLAM (7,47±4,40 and 7,31±4,10 points, p>0,05) such as (46,97±19,39 vs 47,98±22,41 points). The QoL was appreciated as low, by both components (mental and physical), in groups. The damage index was higher in the 2nd group (0,23±0,43 and 1,07±1,29, p<0,001), which can be explained by the development of irreversible changes with the increase of disease duration.The PGA in early SLE was influenced by subjective symptoms contained in SLAM index (r=0,48, p<0,05), such as fatigue and depression, and the level of the quality of life (r=0,65, p<0,001). Meantime, PGA in patients with longer disease duration (>2 years), was influenced by the presence of organ damage by SLICC/ACR DI (0,23, p<0,05) and objective findings of the disease activity contained in SLEDAI (r=0,33, p<0,005) and SLAM (0,44, p<0,001).Conclusion:The disease recognition in patients with early SLE was determined by subjective and psycho-emotional signs, while in patients with longer disease duration it was influenced by organ damage and complications.References:no referencesDisclosure of Interests:None declared

scholarly journals Does a missed obstetric anal sphincter injury at time of delivery affect short-term functional outcome?

2018 ◽  
Vol 100 (1) ◽  
pp. 26-32 ◽  
Author(s):  
L Ramage ◽  
C Yen ◽  
S Qiu ◽  
C Simillis ◽  
C Kontovounisios ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Anal Sphincter ◽  
Short Form ◽  
Primary Repair ◽  
Obstetric Anal Sphincter Injury ◽  
Short Term ◽  
Sphincter Injury ◽  
Anal Sphincter Injury

Introduction This study aimed to ascertain whether missed obstetric anal sphincter injury at delivery had worse functional and quality of life outcomes than primary repair immediately following delivery. Materials and methods Two to one propensity matching was undertaken of patients presenting to a tertiary pelvic floor unit with ultrasound evidence of missed obstetric anal sphincter injury within 24 months of delivery with patients who underwent primary repair at the time of delivery by parity, grade of injury and time to assessment. Outcomes compared included Birmingham Bowel, Bladder and Urinary Symptom Questionnaire (BBUSQ), Wexner Incontinence Score, Short Form-36, Pelvic Organ Prolapse/Urinary Incontinence Sexual Questionnaire and anorectal physiology results. Results Thirty-two missed anal sphincter injuries were matched two to one with sixty-two patients who underwent primary repair of an anal sphincter defect. Mean time to follow-up was 9.31 ± 6.79 months. Patients with a missed anal sphincter injury had suffered more incontinence, as seen in higher the Birmingham Bowel, Bladder and Urinary Symptom Questionnaire (BBUSQ; 30.56% ± 14.41% vs. 19.75% ± 15.65%, P = 0.002) and Wexner scores (6.00 ± 3.76 vs. 3.67 ± 4.06, P = 0.009). They also had a worse BBUSQ urinary domain score (28.25% ± 14.9% vs. 17.01 ± 13.87%, P = 0.001) and worse physical functioning as measured by the Short Form-36 questionnaire (P = 0.045). There were no differences in other outcomes compared, including anorectal physiology and sexual function. Discussion In the short-term, patients with a missed obstetric anal sphincter injury had significantly worse faecal incontinence and urinary function scores, however quality of life and sexual function were largely comparable between groups. Conclusions Longer-term follow-up is needed to assess the effects of missed obstetric anal sphincter injury over time.

scholarly journals Impact of total thyroidectomy on quality of life at 6 months: the prospective ThyrQoL multicentre trial

2020 ◽  
Vol 182 (2) ◽  
pp. 195-205 ◽  
Author(s):  
E Mirallié ◽  
F Borel ◽  
C Tresallet ◽  
A Hamy ◽  
M Mathonnet ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Total Thyroidectomy ◽  
Short Form ◽  
Multivariable Analysis ◽  
Vocal Cord Palsy ◽  
Multicenter Trial ◽  
Significant Impairment ◽  
The Impact ◽  
Benign Thyroid

Objective This study is to determine the impact of complications after total thyroidectomy on health-related quality of life (HR-QoL) and to identify significant predictive factors of HR-QoL changes. HR-QoL is usually impaired in patients with thyroid diseases compared to the general population. Thyroidectomy is largely performed in the case of benign thyroid benign and can be associated with long-term complications (vocal cord palsy, hypoparathyroidism). Design The prospective ThyrQoL multicenter trial (NCT02167529) included 800 patients who underwent total thyroidectomy for benign or malignant non-extensive disease in seven French referral hospitals between 2014 and 2016. Methods HR-QoL was assessed using the MOS 36-item short form health survey (SF-36) self-questionnaire with a 6-month follow-up. Results We observed a significant improvement of HR-QoL 6 months after surgery (P < 0.0001). Postoperative complications were associated with a non-significant impairment of HR-QoL. In multivariable analysis, Graves’ disease was associated with a significant improvement of HR-QoL (OR = 2.39 [1.49; 3.84]) and thyroid malignant disease with an impairment of HR-QoL (OR = 1.44 [0.99; 2.08]) after thyroidectomy. Conclusion We observed a significant improvement of HR-QoL 6 months after total thyroid surgery for benign thyroid disease.

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