Academic literature on the topic 'Systemic Lupus Erythematosus, Health-related Quality of Life, Patient-Reported Outcomes'
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Journal articles on the topic "Systemic Lupus Erythematosus, Health-related Quality of Life, Patient-Reported Outcomes"
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Schmeding, A., and M. Schneider. "Fatigue, health-related quality of life and other patient-reported outcomes in systemic lupus erythematosus." Best Practice & Research Clinical Rheumatology 27, no. 3 (June 2013): 363–75. http://dx.doi.org/10.1016/j.berh.2013.07.009.
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Magro-Checa, C., L. J. J. Beaart-van de Voorde, H. A. M. Middelkoop, M. L. Dane, N. J. van der Wee, M. A. van Buchem, T. W. J. Huizinga, and G. M. Steup-Beekman. "Outcomes of neuropsychiatric events in systemic lupus erythematosus based on clinical phenotypes; prospective data from the Leiden NP SLE cohort." Lupus 26, no. 5 (April 2017): 543–51. http://dx.doi.org/10.1177/0961203316689145.
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Objective The objective of this study was to assess whether clinical and patient’s reported outcomes are associated with a different pathophysiological origin of neuropsychiatric events presenting in systemic lupus erythematosus. Methods A total of 232 neuropsychiatric events presenting in 131 systemic lupus erythematosus patients were included. Neuropsychiatric systemic lupus erythematosus diagnosis was established per event by multidisciplinary evaluation. All neuropsychiatric events were divided according to a suspected underlying pathophysiological process into one of the following: non-neuropsychiatric systemic lupus erythematosus related, inflammatory and ischaemic neuropsychiatric systemic lupus erythematosus. The clinical outcome of all neuropsychiatric events was determined by a physician-completed four-point Likert scale. Health-related quality of life was measured with the subscales of the patient-generated Short Form 36 (SF-36) health survey questionnaire. The change between scores at paired visits of all domain scores, mental component summary (SF-36 MCS) and physical component summary (SF-36 PCS) scores were retrospectively calculated and used as patient-reported outcome. The association among these outcomes and the different origin of neuropsychiatric events was obtained using multiple logistic regression analysis. Results The clinical status of 26.8% non-neuropsychiatric systemic lupus erythematosus events, 15.8% ischaemic neuropsychiatric systemic lupus erythematosus and 51.6% inflammatory neuropsychiatric systemic lupus erythematosus improved after re-assessment. Almost all SF-36 domains had a positive change at re-assessment in all groups independently of the origin of neuropsychiatric events. Neuropsychiatric systemic lupus erythematosus ( B = 0.502; p < 0.001) and especially inflammatory neuropsychiatric systemic lupus erythematosus ( B = 0.827; p < 0.001) had better clinical outcome, with change in disease activity being the only important predictor. The change in SF-36 MCS was also independently associated with neuropsychiatric systemic lupus erythematosus ( B = 5.783; p < 0.05) and inflammatory neuropsychiatric systemic lupus erythematosus ( B = 11.133; p < 0.001). Disease duration and change in disease activity were the only predictors in both cases. The change in SF-36 PCS was only negatively associated with age. Conclusion Inflammatory neuropsychiatric systemic lupus erythematosus events have better clinical outcome and meaningful improvement in SF-36 MCS than ischaemic neuropsychiatric systemic lupus erythematosus or non-neuropsychiatric systemic lupus erythematosus.
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Rodríguez-Rivera, Diana V., Yerania Rodríguez-Navedo, Mariely Nieves-Plaza, and Luis M. Vilá. "Patient-reported outcome measures in a population of medically indigent patients with systemic lupus erythematosus in Puerto Rico." SAGE Open Medicine 4 (January 1, 2016): 205031211667092. http://dx.doi.org/10.1177/2050312116670927.
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Objective: To determine patient-reported outcomes measures in indigent patients with systemic lupus erythematosus receiving their healthcare through the Puerto Rico government managed care system and compare these measures with non-indigent patients treated in a private fee-for-service setting. Methods: A cross-sectional study was conducted in a cohort of 98 Puerto Ricans with systemic lupus erythematosus. Patients from the public group (n = 40) were treated in a university-based specialized systemic lupus erythematosus clinic and the private group (n = 58) in a community-based rheumatology practice. Demographic and clinical features and patient-reported outcomes measures per LupusPRO instrument were determined. LupusPRO captures quality-of-life measures in 12 domains. Differences among study groups were examined using chi-square, Fisher’s exact, t-tests, and the Wilcoxon signed-rank test. Results: The mean (standard deviation) age of the study population was 44.9 (12.0) years; 94 (95.9%) were women. Patients in the public setting were younger and were more likely to have renal disease and elevated anti-double-stranded DNA antibodies, and being treated with azathioprine and cyclophosphamide. Patients from the public sector were more likely to have better quality-of-life measures in the LupusPRO domains of pain/vitality and coping. No significant differences were observed for the domains of lupus symptoms, physical health, emotional health, body image, cognition, procreation, lupus medications, desires/goals, social support, and satisfaction with medical care. Conclusion: Despite having a lower socioeconomic status and worse clinical status, systemic lupus erythematosus patients from the public sector had equal or better patient-reported outcomes measures than those treated in the private setting. This favorable outcome may be associated with the comprehensive healthcare received by these patients in a specialized lupus clinic.
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Saletra, A., J. Meenakshi, K. Fronczyk, Z. Czuszyńska, M. Sierakowska, M. Szmyrka, and M. Olesińska. "AB1490 THE POLISH VALIDATION OF A DISEASE SPECIFIC PATIENT REPORTED OUTCOME MEASURE OF SYSTEMIC LUPUS ERYTHEMATOSUS." Annals of the Rheumatic Diseases 81, Suppl 1 (May 23, 2022): 1849. http://dx.doi.org/10.1136/annrheumdis-2022-eular.5335.
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BackgroundSystemic Lupus Erythematosus (SLE) is a chronic multisystemic autoimmune disease with a very broad clinical picture. Due to its generalized nature, it affects all aspects of the patient’s life, such as physical, psychological and social well-being. As a result, the quality of life in patients with SLE is substantially decreased. Therefore, it is recommended to introduce evaluation of quality of life in clinical trials and in the daily practice.LupusPRO is a disease-targeted, patient reported outcome measure developed for assessment of quality of life in patients with Systemic Lupus Erythematosus. Originally, the questionnaire was validated among US patients of varied ethnic background and both genders.What differs LupusPRO from previous disease-specific quality of life questionnaire used in SLE is its comprehensiveness. It comprises two constructs: health- related quality of life domains (HRQOL) and non- health - related quality of life domains.ObjectivesThe aim of this study is to carry out a cross-cultural adaptation and validation of the Polish-translated version of LupusPRO.MethodsThe Polish version of LupusPRO was administrated along with the 36-Item Short Form Health Survey (SF-36) and EQ-5D-5L questionnaire and Hospital Anxiety and Depression Scale (HADS). At the same time, demographics and clinical characteristics were collected. Disease activity, damage and exacerbation were assessed using SELENA-SLEDAI, SLICC/ACR DI and LFA Flare. Internal consistency reliability, test-retest reliability, convergent validity (against corresponding domains of SF-36) and criterion validity (against disease activity and damage) and known group validity were tested.ResultsA total of 199 (91% females) patients with SLE with a mean age of 42.6 ⊥12.62 years participated in the study. The mean SELENA-SLEDAI reached 5.3(⊥ 5.9) points and SLICC/ACR DI was observed at 1.3(⊥ 2.0) points. The internal consistency reliability of LupusPRO domains ranged between 0.737-0.925 (except for Lupus Symptoms, Social Support, Coping and Satisfaction with care). For all domains, except Social Support, test-retest reliability exceeded 0.7. Convergent validity with corresponding domains of the SF-36 was good (r>0,5). All health-related quality of life domains performed well against disease activity and damage measure, establishing its criterion validity. Known group validity against disease activity was observed. Confirmatory factor analysis showed a good fit.ConclusionThe Polish version of LupusPRO has proved to have fair psychometric properties among Polish patients with SLE. It is the first disease-specific quality of life questionnaire in Polish, validated among Polish patients with Systemic Lupus Erythematosus.References[1]Jolly M, Pickard AS, Block JA et al. Disease-specific patient reported outcome tools for systemic lupus erythematosus. Semin Arthritis Rheum. 2012: 42(1): 56-65. doi:10.1016/j.semarthrit.2011.12.005.Disclosure of InterestsNone declared
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BALITSKY, AMARIS K., VALENTINA PEEVA, JIANDONG SU, ELAHEH AGHDASSI, ERIC YEO, DAFNA D. GLADMAN, MURRAY B. UROWITZ, and PAUL R. FORTIN. "Thrombovascular Events Affect Quality of Life in Patients with Systemic Lupus Erythematosus." Journal of Rheumatology 38, no. 6 (March 1, 2011): 1017–19. http://dx.doi.org/10.3899/jrheum.101054.
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Objective.To compare health-related quality of life (HRQOL) of patients with antiphospholipid syndrome (APS) and systemic lupus erythematosus (SLE) with and without previous thrombovascular events (TE).Methods.The Medical Outcomes Study Short-Form 36 (SF-36) was used to assess HRQOL in 5 patient groups: (1) primary APS (PAPS; n = 35); (2) APS associated to SLE (SAPS; n = 37); (3) SLE+TE without persistent positive antiphospholipid antibody (SLE+TE–aPL; n = 75); (4) SLE–TE+aPL (n = 71); and (5) SLE–TE–aPL (n = 608).Results.The data on both mental component summary and physical component summary (PCS) scores showed an impaired quality of life in all patient groups. Patients in the SLE+TE–aPL group had a lower PCS score compared to patients in the SLE–TE+aPL group.Conclusion.The combination of SLE and TE has a more negative influence on reported HRQOL, compared to having SLE or APS alone.
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Moiseev, S., P. Novikov, and N. Bulanov. "Systemic lupus erythematosus: epidemiology, outcomes and burden." Clinical pharmacology and therapy 31, no. 4 (November 13, 2021): 13–22. http://dx.doi.org/10.32756/0869-5490-2021-4-13-22.
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The estimates of incidence and prevalence of systemic lupus erythematosus (SLE) in Europe are 1.5-4.9 per 100 000 persons-years and 30-70 per 100 000 people, respectively. Over the last 50 years, survival in SLE patients has improved significantly. Moreover, immunosuppressive treatment resulted in a decreased risk of death from active disease, whereas infections and cardiovascular disease have become the main causes of death in SLE populations. Almost 70% of SLE patients have recurrent course of disease, although long-term remissions or persistent disease activity also occur in a proportion of patients. Annually, every third SLE patient develops moderately severe or severe flares. Recurrent flares, complications of immunosuppressive treatment and comorbidity are associated with accrual of organ damage that increases the risk of death. SLE patients have impaired health-related quality of life correlating with both disease activity and organ damage. Being on remission of SLE or on low disease activity is associated with better outcomes, including lower mortality and risk of damage or flares, improved quality of life, lower hospitalisation rates and costs. Glucocorticoids remain the mainstay of SLE treatment, although their use should be limited, e.g. by proper administration of immunosuppressive or antiinflammatory agents that have steroid-sparing activity. Treatment and prevention of infections and cardiovascular outcomes are also essential for further improvement of survival of SLE patients.
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Elefante, Elena, Chiara Tani, Chiara Stagnaro, Francesco Ferro, Alice Parma, Linda Carli, Viola Signorini, et al. "Impact of fatigue on health-related quality of life and illness perception in a monocentric cohort of patients with systemic lupus erythematosus." RMD Open 6, no. 1 (February 2020): e001133. http://dx.doi.org/10.1136/rmdopen-2019-001133.
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BackgroundFatigue is a very common and debilitating symptom in patients with systemic lupus erythematosus (SLE), even among those with a mild or inactive disease. The objective of this study is to define fatigue determinants and describe the impact of fatigue on health-related quality of life (HRQoL) and illness perception in a monocentric cohort of patients with SLE.MethodsThis is a cross-sectional study. Adult patients with SLE were included. For each patient, demographics, medications, comorbidities, organ damage (Systemic Lupus International Collaborating Clinics Damage Index), active disease manifestations and Systemic Lupus Disease Activity Index scores were collected. It was evaluated if each patient met the definitions of remission and low disease activity. At enrolment, each patient completed the Short Form-36 (SF-36), Functional Assessment Chronic Illness Therapy-Fatigue (FACIT-F), Lupus Impact Tracker (LIT), Systemic Lupus Activity Questionnaire (SLAQ) and Brief Index of Lupus Damage (BILD). The FACIT-F questionnaire was also administered to a group of healthy controls.Results223 patients were included (mean age 44.9±13.2 years, median disease duration 13 years). 18.2% had an active disease, 43.5% met the definition of remission on treatment, and 11.8% had a concomitant fibromyalgia. The median FACIT-F score of our cohort was significantly lower compared with that of healthy controls (40 vs 47; p<0.001). FACIT-F scores were irrespective of age, disease duration, disease activity and damage. FACIT-F score was significantly lower in patients with fibromyalgia (p<0.01). FACIT-F scores demonstrated a significant correlation with all other patient-reported outcomes: SF-36 (r=0.53–0.77), LIT (r=−0.78), SLAQ (r=−0.72) and BILD (r=−0.28).ConclusionsFatigue in patients with SLE has a strong negative impact on HRQoL and patient perception of the disease burden. Fatigue seems irrespective of disease activity but significantly influenced by the presence of fibromyalgia.
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Elkaraly, N. E., S. I. Nasef, A. S. Omar, A. M. Fouad, J. Meenakshi, and A. E. Mohamed. "AB1238 THE ARABIC LUPUSPRO: CROSS-CULTURAL VALIDATION OF A DISEASE-SPECIFIC PATIENT-REPORTED OUTCOME TOOL FOR QUALITY OF LIFE IN LUPUS PATIENTS." Annals of the Rheumatic Diseases 79, Suppl 1 (June 2020): 1909.1–1910. http://dx.doi.org/10.1136/annrheumdis-2020-eular.4042.
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Background:Systemic lupus erythematosus (SLE) is a chronic autoimmune disease with high morbidity and disability that affects all aspects of quality of life (QoL).(1)LupusPRO is a disease-targeted patient-reported outcome tool for the measurement of health and non-health related quality of life (HRQoL and Non-HRQoL) in SLE patients.(2)Objectives:To translate, cross-culturally adapt, and validate the LupusPRO v.1.8 into the Arabic Language.Methods:LupusPRO v.1.8 was translated into Arabic following the forward-backward translation guideline.(3)The Arabic version of LupusPRO was subsequently applied to 107 Egyptian SLE patients. To assess test-retest reliability, the Arabic LupusPRO was completed on two occasions, two weeks apart. Validation was performed against the Arabic version of Medical Outcomes Study Short Form (SF-36), the Systemic Lupus Erythematosus Disease Activity Index (SELENA-SLEDAI) and the Systemic Lupus International Collaborating Clinics/American College of Rheumatology damage index (SDI). Discriminant validity of Arabic LupusPRO was evaluated against the SF-36 (item 1), while the conceptual framework was evaluated by the confirmatory factor analysis (CFA).Results:The study included 107 patients, 95% of whom were women. Their median age was 32 (range:18-55) years. Arabic LupusPRO’s Cronbach’s alpha ranged from 0.71 to 0.98 except for the social support domain (0.65). Test-retest reliability ranged from 0.83 to 0.98. Convergent validity with corresponding domains of the SF-36 was satisfactory. Criterion validity showed a weak and non-significant correlation of lupusPRO domains with SDI except for physical domain and significant weak correlation with SELENA-SLEDAI (Table1). Discriminant validity showed acceptable results against the SF-36 (item 1). The CFA showed good model fit indices for the hypothesized item-to-scale relationships (CFI =0.988, TLI = 0.987, and RMSEA=0.062), with most of item-to-scale loadings greater than 0.9.Conclusion:The Arabic version of LupusPRO v1.8 is a reliable and valid tool for measuring QoL(HRQoL and Non-HRQoL) in Arabic-speaking SLE patients.References:[1]Mcelhone K, Abbott J, Teh L-SJL. A review of health- related quality of life in systemic lupus erythematosus. Lupus 2006;15(10):633-43.[2]Jolly M, Pickard AS, Block JA, et al. Disease-specific patient reported outcome tools for systemic lupus erythematosus. Semin Arthritis Rheum. 2012;42(1):56–65.[3]Beaton D, Bombardier C, Guillemin F, Ferraz M. Guidelines for the Process of Cross-Cultural Adaption of Self-Report Measures. Spine. 2001;25:3186-91.Table 1.Validity of the Arabic LupusPRO against disease activity, damage index and SF-36LupusPRO DomainValiditySF-36Total SLEDAITotal SDIDomainRho (P)Rho (P)Rho (P)Lupus Symptoms-0.25 (0.010)-0.17 (0.08)Cognition-0.15 (0.117)-0.21 (0.03)Lupus Medications-0.22 (0.021)-0.37 (0.001)Procreation0.003 (0.977)-0.20 (0.04)Physical HealthRF0.84 (<0.001)-0.34 (<0.001)-0.31 (0.001)RP0.75 (<0.001)Sleep-0.32 (0.001)-0.09 (0.33)FatigueVT0.80 (<0.001)-0.33 (0.001)-0.12 (0.33)PainBP0.86 (<0.001)-0.22 (0.026)-0.18 (0.07)Emotional HealthMH0.74 (<0.001)-0.33 (0.001)-0.19 (0.05)RE0.80 (<0.001)Body Image-0.30 (0.002)-0.25 (0.008)Desire/Goals-0.28 (0.004)-0.10 (0.30)Social Support0.22 (0.02)-0.20 (0.04)Coping0.07 (0.461)-0.20 (0.03)Satisfaction of Medical Care0.18 (0.066)-0.11 (0.24)HRQoLGH0.81 (<0.001)-0.37 (<0.001)-0.28 (0.004)None-HRQoL-0.08 (0.42)-0.26 (0.007)PF: Physical functioning; RP: role physical; RE: role emotional; VT: vitality; MH: Mental health; BP: Bodily Pain; GH: General health.Disclosure of Interests:None declared
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Parodis, Ioannis, and Paul Studenic. "Patient-Reported Outcomes in Systemic Lupus Erythematosus. Can Lupus Patients Take the Driver’s Seat in Their Disease Monitoring?" Journal of Clinical Medicine 11, no. 2 (January 11, 2022): 340. http://dx.doi.org/10.3390/jcm11020340.
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Systemic lupus erythematosus (SLE) is a chronic autoimmune disorder that has detrimental effects on patient’s health-related quality of life (HRQoL). Owing to its immense heterogeneity of symptoms and its complexity regarding comorbidity burden, management of SLE necessitates interdisciplinary care, with the goal being the best possible HRQoL and long-term outcomes. Current definitions of remission, low disease activity, and response to treatment do not incorporate self-reported patient evaluation, while it has been argued that the physician’s global assessment should capture the patient’s perspective. However, even the judgment of a very well-trained physician might not replace a patient-reported outcome measure (PROM), not only owing to the multidimensionality of self-perceived health experience but also since this notion would constitute a direct contradiction to the definition of PROMs. The proper use of PROMs is not only an important conceptual issue but also an opportunity to build bridges in the partnership between patients and physicians. These points of consideration adhere to the overall framework that there will seldom be one single best marker that helps interpret the activity, severity, and impact of SLE at the same time. For optimal outcomes, we not only stress the importance of the use of PROMs but also emphasize the urgency of adoption of the conception of forming alliances with patients and facilitating patient participation in surveillance and management processes. Nevertheless, this should not be misinterpreted as a transfer of responsibility from healthcare professionals to patients but rather a step towards shared decision-making.
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Fangtham, M., S. Kasturi, R. R. Bannuru, J. L. Nash, and C. Wang. "Non-pharmacologic therapies for systemic lupus erythematosus." Lupus 28, no. 6 (April 8, 2019): 703–12. http://dx.doi.org/10.1177/0961203319841435.
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Background Non-pharmacologic therapies have been deemed as potentially beneficial for patients with systemic lupus erythematosus. We conducted an updated review to determine the effects of these therapies to inform practice. Methods A literature search was performed using PubMed (MEDLINE), EMBASE, Cochrane, PsychINFO, the Cumulative Index to Nursing and Allied Health Literature, Web of Science, and Google Scholar from inception until August 2018. We included randomized controlled trials of non-pharmacologic therapies in systemic lupus erythematosus patients with sample size ≥10. Systemic lupus erythematosus was defined by 1982 or 1997 American College of Rheumatology criteria. Studies were synthesized separately by patient-reported outcomes and disease activity. Due to the heterogeneity of interventions and comparisons, a meta-analysis was not performed. Results A total of 15 randomized controlled trials involving 846 participants met the inclusion criteria. Of the 15 trials, eight used exercise interventions, six used psychological interventions (one group psychotherapy, three cognitive behavioral therapies, one psychoeducation, one mindfulness-based cognitive therapy) and one used electro-acupuncture. Five of 15 studies utilized control groups consisting of usual medical care. Other studies included control interventions of relaxation, attention placebo, symptom monitoring support, education, minimal needling, isotonic and resistance exercise. Compared with the control conditions, non-pharmacological interventions were associated with a significant improvement in fatigue in three out of six studies. Three out of eight studies reported improved anxiety and depression, and one study reported improved pain after interventions. Seven out of 11 studies reported improvement in overall quality of life in at least one domain of the Short-Form Health Survey. Of note, no studies demonstrated an improvement in disease activity after 5–52 weeks of non-pharmacological therapies. Conclusion This review showed promising results for physical exercise and psychological interventions as adjuncts to traditional medical therapy for improvement in fatigue, depression, pain and quality of life for systemic lupus erythematosus. Further high-quality randomized controlled trials with longer follow-up periods are warranted.
Dissertations / Theses on the topic "Systemic Lupus Erythematosus, Health-related Quality of Life, Patient-Reported Outcomes"
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Elefante, Elena. "Integrating Patient Reported Outcomes, clinical data and quality indicators to physician driven data in clinical management of chronic rheumatic diseases: the paradigm of Systemic Lupus Erythematosus (SLE)." Doctoral thesis, Università di Siena, 2021. http://hdl.handle.net/11365/1160790.
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A discordance exists between patients and physicians in the assessment of Systemic Lupus Erythematosus (SLE). A more patient-oriented research to address the multifaceted dimensions of the disease burden is warranted.
The aim of this study was to investigate patients’ needs and expectations about their medical care, with the objective of integrating patient-reported data to the traditional physician evaluation towards a new shared strategy for the monitoring of SLE.
The first step of the project was a systematic literature review of existing clinical and non-clinical indicators for the management of SLE and of currently available SLE-dedicated IT tools (Apps) designed to involve the patient in the gathering of clinical and quality of life data about their health.
On the basis of the results of the literature review, ad-hoc on-line surveys have been designed, targeting European experts in the field and SLE patients. The aim was to investigate both the real use of such indicators in clinical practice and to identify needs and expectations experienced by doctors and patients in management of the disease.
Finally, the survey results have been discussed in dedicated focus groups of patients, clinicians but also general practitioners, nurses and one caregiver.
According to the project results, the key elements for the development of a new paradigm for SLE management should include:
• MULTIDISCIPLINARITY and NETWORKING
• PATIENT-PHYSICIAN COMMUNICATION
• PATIENT’S EDUCATION
• PATIENT’S EMPOWERMENT
First of all, the ideal setting for the management of the disease seems to be represented by a dedicated “Lupus clinic”, where the patient can be in charge of a team of expert health care professionals. The networking with multi-disciplinary specialists should be encouraged.
From both the patients’ and clinicians’ perspective emerged that the communication between the parts is often inadequate in terms of both contents and means.
SLE patients declared that they have a real, shared hunger for information about the disease and, on the other hand, clinicians think that only an educated patient can be really empowered. Some instruments may be of help to make such an educational process to happen. Both clinicians and patients agreed on the fact that an ideal IT solution would be of benefit in the management of the disease. Self-management of simple tasks is important as one of the first steps towards patient’s engagement and empowerment.
In conclusion, several unmet needs seem to be present in the management of SLE, both from the patient’s and the clinician’s point of view.
In this setting, the results of the project pointed out a path to follow in the management of Lupus patients and lay the foundations for a new shared strategy for disease management in clinical practice which may serve as a prototype for other chronic diseases.
Books on the topic "Systemic Lupus Erythematosus, Health-related Quality of Life, Patient-Reported Outcomes"
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Minden, Kirsten. Outcomes of paediatric rheumatic disease. Oxford University Press, 2013. http://dx.doi.org/10.1093/med/9780199642489.003.0035.
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Paediatric rheumatic illnesses are among the most common chronic diseases in children and adolescents. These illnesses have important impacts on patient's body functions and structures, activities, and social participation. Knowledge about the effect and consequences of these diseases is necessary to formulate appropriate aims of treatments. The multidimensional outcomes of paediatric rheumatic diseases and their measurement are reviewed in this chapter. Outcome measurement is complex in patients who have growing needs and changing expectations as they develop, especially in chronic conditions that have a variable and often unpredictable course, such as juvenile idiopathic arthritis, juvenile systemic lupus erythematosus, and juvenile dermatomyositis. Considerable work has been conducted recently in an effort to better define and value global outcomes for these patients. New and reliable outcome measures have been developed to capture all aspects of the patient's life and integrate the patients' perspective. Existing outcome studies of paediatric rheumatic diseases have consistently shown, even though differing in their methodology, that patient outcomes have improved over the last decade. More patients with chronic inflammatory rheumatic conditions survive into adulthood, and patients' long-term health, functional, and quality of life outcomes have improved. However, outcomes are still less than ideal. More than one-half of the patients with paediatric rheumatic diseases have ongoing active disease in early adulthood. Over one-third have evidence of disability and organ damage, with each underlying disease being associated with specific complications. Clearly, given the inherent potential for disability, morbidity, even mortality, young people with paediatric-onset rheumatic diseases require ongoing medical care into adulthood.
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Minden, Kirsten. Outcomes of paediatric rheumatic disease. Oxford University Press, 2016. http://dx.doi.org/10.1093/med/9780199642489.003.0035_update_002.
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Paediatric rheumatic illnesses are among the most common chronic diseases in children and adolescents. These illnesses have important impacts on patient’s body functions and structures, activities, and social participation. Knowledge about the effect and consequences of these diseases is necessary to formulate appropriate aims of treatments. The multidimensional outcomes of paediatric rheumatic diseases and their measurement are reviewed in this chapter. Outcome measurement is complex in patients who have growing needs and changing expectations as they develop, especially in chronic conditions that have a variable and often unpredictable course, such as juvenile idiopathic arthritis, juvenile systemic lupus erythematosus, and juvenile dermatomyositis. Considerable work has been conducted recently in an effort to better define and value global outcomes for these patients. New and reliable outcome measures have been developed to capture all aspects of the patient’s life and integrate the patients’ perspective. Existing outcome studies of paediatric rheumatic diseases have consistently shown, even though differing in their methodology, that patient outcomes have improved over the last decade. More patients with chronic inflammatory rheumatic conditions survive into adulthood, and patients’ long-term health, functional, and quality of life outcomes have improved. However, outcomes are still less than ideal. More than one-half of the patients with paediatric rheumatic diseases have ongoing active disease in early adulthood. Over one-third have evidence of disability and organ damage, with each underlying disease being associated with specific complications. Clearly, given the inherent potential for disability, morbidity, even mortality, young people with paediatric-onset rheumatic diseases require ongoing medical care into adulthood.
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Minden, Kirsten. Outcomes of paediatric rheumatic disease. Oxford University Press, 2018. http://dx.doi.org/10.1093/med/9780199642489.003.0035_update_003.
Full textAbstract:
Paediatric rheumatic illnesses are among the most common chronic diseases in children and adolescents. These illnesses have important impacts on patient’s body functions and structures, activities, and social participation. Knowledge about the effect and consequences of these diseases is necessary to formulate appropriate aims of treatments. The multidimensional outcomes of paediatric rheumatic diseases and their measurement are reviewed in this chapter. Outcome measurement is complex in patients who have growing needs and changing expectations as they develop, especially in chronic conditions that have a variable and often unpredictable course, such as juvenile idiopathic arthritis, juvenile systemic lupus erythematosus, and juvenile dermatomyositis. Considerable work has been conducted recently in an effort to better define and value global outcomes for these patients. New and reliable outcome measures have been developed to capture all aspects of the patient’s life and integrate the patients’ perspective. Existing outcome studies of paediatric rheumatic diseases have consistently shown, even though differing in their methodology, that patient outcomes have improved over the last decade. More patients with chronic inflammatory rheumatic conditions survive into adulthood, and patients’ long-term health, functional, and quality of life outcomes have improved. However, outcomes are still less than ideal. More than one-half of the patients with paediatric rheumatic diseases have ongoing active disease in early adulthood. Over one-third have evidence of disability and organ damage, with each underlying disease being associated with specific complications. Clearly, given the inherent potential for disability, morbidity, even mortality, young people with paediatric-onset rheumatic diseases require ongoing medical care into adulthood.
Book chapters on the topic "Systemic Lupus Erythematosus, Health-related Quality of Life, Patient-Reported Outcomes"
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Minden, Kirsten. "Outcomes of paediatric rheumatic disease." In Oxford Textbook of Rheumatology, 264–73. Oxford University Press, 2013. http://dx.doi.org/10.1093/med/9780199642489.003.0035_update_004.
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Paediatric rheumatic illnesses are among the most common chronic diseases in children and adolescents. These illnesses have important impacts on patient’s body functions and structures, activities, and social participation. Knowledge about the effect and consequences of these diseases is necessary to formulate appropriate aims of treatments. The multidimensional outcomes of paediatric rheumatic diseases and their measurement are reviewed in this chapter. Outcome measurement is complex in patients who have growing needs and changing expectations as they develop, especially in chronic conditions that have a variable and often unpredictable course, such as juvenile idiopathic arthritis, juvenile systemic lupus erythematosus, and juvenile dermatomyositis. Considerable work has been conducted recently in an effort to better define and value global outcomes for these patients. New and reliable outcome measures have been developed to capture all aspects of the patient’s life and integrate the patients’ perspective. Existing outcome studies of paediatric rheumatic diseases have consistently shown, even though differing in their methodology, that patient outcomes have improved over the last decade. More patients with chronic inflammatory rheumatic conditions survive into adulthood, and patients’ long-term health, functional, and quality of life outcomes have improved. However, outcomes are still less than ideal. More than one-half of the patients with paediatric rheumatic diseases have ongoing active disease in early adulthood. Over one-third have evidence of disability and organ damage, with each underlying disease being associated with specific complications. Clearly, given the inherent potential for disability, morbidity, even mortality, young people with paediatric-onset rheumatic diseases require ongoing medical care into adulthood.
Conference papers on the topic "Systemic Lupus Erythematosus, Health-related Quality of Life, Patient-Reported Outcomes"
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Grau-García, Elena, Samuel Leal-Rodríguez, Cristóbal Pávez-Perales, Cristina Alcañiz-Escandell, Inés Cánovas-Olmos, Inmaculada Chalmeta-Verdejo, Marta De-la-Rubia-Navarro, et al. "P180 Correlation between patient reported outcomes of health-related quality of life and clinical activity in systemic lupus erythematosus patients." In 12th European Lupus Meeting. Lupus Foundation of America, 2020. http://dx.doi.org/10.1136/lupus-2020-eurolupus.222.
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García, Elena Grau, Jorge Juan Fragio-Gil, Roxana Gonzalez Mazario, Carmen Nájera Herranz, Inés Cánovas Olmos, Jose Ivorra Cortés, Cristina Alcañiz Escandell, et al. "AB0517 CORRELATION BETWEEN PATIENT-REPORTED OUTCOMES OF HEALTH-RELATED QUALITY OF LIFE AND CLINICAL ACTIVITY IN SYSTEMIC LUPUS ERYTHEMATOSUS PATIENTS." In Annual European Congress of Rheumatology, EULAR 2019, Madrid, 12–15 June 2019. BMJ Publishing Group Ltd and European League Against Rheumatism, 2019. http://dx.doi.org/10.1136/annrheumdis-2019-eular.5661.
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Borg, A., A. Soltani, S. Emamikia, J. Lindblom, A. Gomez, G. Von Perner, Y. Enman, et al. "PO.7.149 Associations between abnormal bmi and patient-reported health-related quality of life before and after therapeutic intervention in patients with systemic lupus erythematosus." In 13th European Lupus Meeting, Stockholm (October 5–8, 2022). Lupus Foundation of America, 2022. http://dx.doi.org/10.1136/lupus-2022-elm2022.169.
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